Patient Self-Reported Medical Timeline
Benjamin Newton (24/04/1991)
Benjamin NEWTON
D.O.B. 24/04/1991
NHS No. 620 824 4617
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Benjamin NEWTON
D.O.B. 24/04/1991
NHS No. 620 824 4617
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* Some dates are approximations, denoted by (~)
Minor complications at birth. Reported that umbilical cord was tanlged around neck during delivery. Otherwise okay.
Seemingly normal childhood. Uneventful and relatively normal experiences, I was perhaps shy and anxious or easily upset in social situations. I didn't engage much socially because I struggled with it, but other than that I did okay. Nobody really noticed.
Broken nose in football injury at primary school, obstructed airway and unable to breathe through nose as a child. First septorhinoplasty surgery performed. Unfortunately unsuccessful. Advised to wait until age 18 & try again.
Additional comments: Unfortunately the first operation as a child was not a success and it unfortunately left me with a severely deviated septum and chronically obstructed airway. I began to develop repeated sinus infections and sinus drainage issues, and was also diagnosed with Euchstacian Tube Dysfunction after a CT scan detected a build up of fluid in my inner-ear. I benefit from rinsing my nose with a salt-water spray called Sterimar, and sometimes when sinus issues become really bad I have used nasal corticosteroids in the past. I have been plaged with sinus issues throughout my life and my nose is not as functional as it could be. As a sporty child, I used to hate not being able to breathe through my nose - mouth breathing for my entire life has been labourous and also, I think it contributes to my oral health issues as I constantly have to breathe through my mouth. It is also worth mentioning that my medical notes state that I have body dysphoria because of my nose surgeries. They paint the picture that I was purely unhappy with the aesthetics of my nose - which is obviously not the case, nor does the NHS perform nose jobs for cosmetic reasons. I had 3 septorhinoplasties in my life purely because I had an obstructed nasal passage and could not breathe properly through my nose. This was causing repeated sinus infections and various other knock-on health issues. I had it addressed purely for this reason. Although as a child, I admit, I was unhappy that my face was asymmetrical and my nose appeared to severely slant to one side of my face - such was a fact of life and I could do nothing to change this. I certainly disagree that I have body dysmorphia, especially because this only appeared in my notes after discussing my nasal surgeries with a locum psychiatrist.
Foreskin painfully gets stuck behind glands of penis as child
Additional comments: As a child I have a really painful and vivid memory of being in the bath, at a time in my life where I was unable to manually retract my foreskin. I believe I was a young boy sliding around in the bath on my stomach, and caught my genitals against the ceramic of the bath, which caused me to experience a twisting-type pain. I believe that I somehow accidentally, but forcefully retracted my foreskin by catching it against the bathtub in this way. I do not have any other memories other than screaming out in agony, and my grandparents rushing to my aid. I remember it was my grandad who had to help to restore my foreskin to it's original position. I have never discussed this with a urologist, but I think this injury may have had more significance on my life than I believed at the time. I have since brought this up with my grandmother as an adult and she recalls the story also, so it was good to know I didn't imagine it. I have started to join the dots in my later life, and I am almost sure this was the first instance of anything being 'wrong'. In hindsight, this leads me to wonder whether testicular torsion was ever an accurate diagnosis, or whether I have experienced some kind of trauma and injury to the blood vessels or structures within my genitals. I find it worthy of mention that it's concerning to me that my foreskin continues to get trapped as an adult, and causes me a lot of discomfort since this time. The blood vessels in this area become so itchy, tender and painful, that I often have to pull on them until I feel them wiggle and move, and suddenly they become comfortable. I have googled for years and I see no other men complaining of similar issues, albeit, it is also interesting how whenever I have blood tests phlebotomists tell me that my veins are a nightmare because they 'roll' out of the way. I wonder if, the fact that my veins like to roll a lot, somehow causes them to be blood-flow comprimised to varying degrees at different points in time, and this is another manifestation of my condition. Not only does this seem to happen in my foreskin, but the feeling of small blood vessels twisting and hurting occurs in my eyelids and also in the blood vessels in my forearms. I do wonder if it is all somehow connected. I have wondered whether it is related to the elasticity of my soft tissue, dehydration, or some other rheumatological/neurological/vascular/infective or inflammatory factor.
Developed repeated genital rash which I vividly remember at the time because my granded made a joke of pulling some 'Spotted Dick' out of the freezer isle in ASDA and saying "Look - it's you!". Interestingly, I still experience similar rashes to this day.
Additional comments: It is interesting to me that I still experience similar flare-ups and rashes as I did as a child, although now they seem to be progressively worse. The rash is very similar, if not identical, to what appears in Google if you search for 'henoch schonlein purpura'. Lots of tiny pin-prick red dots, clustered together. The most recent episode was in June 2022, which was presented to my GP.
Injured back against edge of a swimming pool as people were swinging me into the pool as a child.
Additional comments: I was on holiday in Turkey, and some friends I had met at the hotel had grabbed me by an arm and a leg and were swinging me into the pool to throw me in. However, when swinging in the arched-back position, my spine came into contact with the sharp edge of the marble-stone swimming pool, which had a 'lip' around the pool raised like the curb of a pavement. I caught the bumpy bit of my spine against this sharp edge and when I landed in the water I just remember seeing red blood all around me, and being unable to swim. Eventually I managed to doggy paddle somehow and get myself out of the pool but as soon as I got out of the pool I collapsed and woke up some time later with all of the adults and a doctor fussing over me by the side of the pool still. I do not believe I was taken to hospital at the time, however, I have had continual problems with my lower back feeling weak and giving way, especially when lifting things or landing in certain ways, throughout my life. I think my spine has taken a few close-call beatings which I have been fortunate enough to come out relatively unscathed from. This incident + my snowboarding accident both could have ended very differently.
Started noticing troubling urological issues, lumps, bumps and rashes which would come and go. GP attributed it to hormones at the time and said it would pass as I complete puberty.
Additional comments: Unfortunately it doesn't seem to show any signs of relenting, still to this day. Pains and itching mostly travels along blood vessels, doing my own research, the closest I have come to finding a description of my symptoms is Mondor's Disease. I feel that this is a cause of a vast majority of my blood-vessel related symptoms in this area. It might also explain why I feel like I do not get enough blood flow to the area, which in turn, might also account for the repeated infections and transient episodes of what is diagnosed as 'balanitis' even though the rashes that are diagnosed as such only appear for up to 24 hours until it feels like the blood flow improves, and then the rashes disappear. I am not sure whether balanitis would appear and disappear like this based on circulation, but I could be wrong. I can very clearly identify and spot painful and itchy microvasculature and blood vessels within my skin, which seem to be the cause of my symptoms and accounts for the 'twisting' or 'blockage' of a blood vessel which I describe. Given that I spend most of my days having to massage and improve the circulation to this area to improve symptoms, I feel there is some merit behind my thoughts that it could in some way be either vascular or lymphatic in nature.
Experiencing dizzy spells & feelings of intense 'malaise' even when relaxing or playing sports.
Additional comments: It often felt like a sugar-crash or low blood sugar, and I would crave sugary sweets or snacks until the feeling passed. I would have to lie down until it did.
Collapsing while doing sports etc.
Additional comments: I started noticing that physical exertion sometimes triggered the episodes of sudden faintness and nausea. One time of note, I collapsed during a P.E. lesson. And more recently I collapsed with personal trainers. Nowadays I am not often active enough to still experience the same symptoms, as these days I generally avoid physical activity or heavy lifting which can provoke my symptoms.
Grief of Grandad passing away. Had my first experience of uncontrollable grief and intense, unbearable sadness. Struggled to process the untimely passing of my grandad.
Additional comments: I unfortunately didn't receive much help or counselling at the time, and I feel that I have a lot of unprocessed grief relating to the death of my Grandad, even all these years later. It could be the case that this is entirely normal and to be expected. I certainly don't believe it is a reason to contribute to me having an EUPD diagnosis. I believe my grief is a natural and proportionate response to the loss that I feel I have suffered. To an outsider it may appear disordered, however, they do not know how much my grandad meant to me and I do not accept that it is disordered or disproportionate.
Go to see GP regarding persistent swollen lymph nodes under jaw.
Additional comments: At the time the GP noticed that they were slightly swollen and enlarged, but told me that it would likely be temporary in response to an infection and they would soon go back down. Unfortunately they never have and have continued to increase in size at a slow rate since this time.
Injured genitals with forceful blunt impact while erect
Additional comments: One time during intercourse I noticed a snapping sensation in my penis which caused sudden extreme pain. I never sought medical attention for this at the time. I was pretty embarassed by it. I did not notice any bruising or bleeding, however, ever since then, my penis became incredibly painful, and all of my genital symptoms began manifesting. I kept experiencing intense itching in blood vessels, hypersensitivity and other such symptoms which would make it diffult to rest and be comfortable. Particularly distressing were the symptoms in public. It's one thing in my own personal space, but it's ten times more distressing in public. It was not long after this I started experiencing intense episodes of pain in my testicles and base of my penis.
Fall from height while snowboarding and land on tailbone, causing a compressive injury to spine, taken to hospital on spinal board
Additional comments: Around this time in 2012, I had an accident while snowboarding. I fell from around 10ft high and landed in a sitting position straight onto my tailbone. I whipped back and landed flat. Once I tried to sit up, I remember feeling that my lower back gave way, and I was only supporting my weight with my abdominal muscles. In the shock and strange weakness and numbness in my back, I collapsed back to the ground as I suddenly felt unable to lift my own weight. An ambulance was called and I was taken in on a spinal board. At hospital I was quickly assessed, the doctor felt down my spine and then told me I could go home. There was no scan performed on this occasion, so I do not know if there were any small injuries of damage to the nerves or anything else within my spine, or tailbone that could account for some of my symptoms I experience today.
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Sitting down becomes painful in the tailbone area.
Additional comments: No scan was done on my spine so I guess I will never know if I did injure it, or at least my tailbone. However, since the accident sitting down became painful and uncomfortable. The longer I sat for, the more numb and painful my tailbone would become; and then standing up would wind me and take my breath away because of the deep pain in my lower spine. But once standing and mobile again it would soon fade, until I sit again.
Started experiencing strange episodes of high blood pressure and anxiety-like panic which would make me feel dizzy.
Additional comments: Although these were diagnosed as panic attacks, I am not fully sure that they are. I have been investigated for high blood pressure and endocrinolgy once became aware of me because they wanted to rule out pheochromocytoma as a cause of my blood pressure spiking extremely high (above ~200/140) at random times. Nothing came of the investigations that I wasa referred for in around ~2016/17, however, I continued to experience these attacks from time to time. When I attended the hospital to have my metanepherine plasma level checked; the doctor refused to do the test and told me that he had looked at my recent bloods and they were fine. However, my GP disagreed because my GP referred me to him solely because the hospital had written to him saying that my metanepherine levels were elevated. The test was never repeated. There was no specific cause or trigger to the episodes, they would just happen. I noticed that they got worse around the times I would get pain. They are still happening in 2024. Episodes of intense sweating and very high blood pressure has been a persistent background lingering symptom for a long time now. Sometimes it's accompanied by a need to consume lots of sugar or food and feeling faint, other times it is pure adrenaline and I am unable to eat at all.
Foreskin repeatedly gets stuck behind glands of penis
Additional comments: I also notice since then that my foreskin repeatedly gets stuck behind the glands, and the skin appears to 'roll-in' on itself. It then becomes impossible for me to manually unroll it, and I often have to apply heat compresses and relax the area until whatever automnous bodily function takes over to cause them to move on their own accord. I find that my foreskin goes into a type of spasm where the skin feels really taught, and the blood vessels in this area become painful and swollen. I then feel as if blood flow isn't getting to the glands of my penis, and soon after I experience pain. I have wondered whether this is the sole driving force of what I believe to be my vascular issues. I wonder if my foreskin is somehow comprimising my blood flow, and causing the repeated infections, swellings and pain that I experience.
Diagnosed with Depression and Social Anxiety Disorder.
Additional comments: At this stage I was diagnosed with Social Anxiety Disorder. Whilst I did not relate to the symptoms of depression per say (mainly, I did not feel my low moods were caused by a mental state independent of all psyhiological and biological input). Rather, I felt that my low mood and mental health symptoms were a knock-on consequence of my physical health issues. However, I did find some relatability to the Social Anxiety Disorder label. It provided some explanation for my difficulties in social situations which I have faced throughout my child and adult life.
Trialled many different antidepressants.
Additional comments: Throughout this period, I trialled almost every antidepressant that my mental health team could throw at me: Sertraline, Venlafaxine, Fluoxetine, Mirtazapine, Vortioxetine, Citalopram, Escitalopram and others. Unfortunately none of them helped me symptoms and all of them made me much worse. I also tried other medicines such as Diazepam, Lorazepam, Promazine, Pregabalin and Propanalol. These were somewhat better than antidepressants but still did not fully resolve my symptoms. The lack of efficacy of antidepressants or any other medicine that my mental health team could throw at me convinced me even further that this was not 'in my head' and had a physiological cause. Although the episodes presented like anxiety, I did not feel anxious in the moment, in fact I was often completely calm - it was only my body that was in distress. So I have never quite believed they were full blown panic attacks, rather I have always believed they were triggered by something other than mental health issues.
Dropped out of University due to health issues.
Additional comments: I was unable to attend University and commit to my studies. Instead I was becoming avoidant due to my health issues and struggles with my physical conditions. I found myself no longer enjoying the company of others when I was in extreme digestive discomfort. My physical symptoms and experiences had began to translate into real tangible fear-inducing anxiety. This was far beyond anything I had initially reached out for help with. I felt that since asking for help — I was becoming worse, not better. I had to give up drinking alcohol completely, and going out and experiencing the night life and all that University has to offer became next to impossible. I became unhappy at uni and didn't really thrive because of this. In the end, despite my best efforts to stay, University proved to not be the right place or the right time for me. I was expericing excessive sweating, and shaking that I could not control. My digestive system was always playing up and I would constantly be faced with toilet issues. I started to experience more intense 'panic-like' attacks. It was at university that I became friends with someone studying Chemisty and Biology, and they introduced me to cannabis at this time. However, it was not until many years down the line that I fully came to use cannabis to combat some of my physical symptoms. I did notice a benefit back then, however I was very anti-drugs at the time, and I did not approve of cannabis use. Up until this stage in my life, I had never smoked or taken drugs beyond alcohol. This still remains true to this present day, with the exception of cannabis. My cannabis use at this time was infrequent and mostly recreational. I had not yet attributed it to being an effective medicine.
Intermittent Testicular Torsion (ITT) Diagnosis Woke up in extreme one-sided genital pain and was taken to hospital and told my symptoms are likely caused by ITT.
Additional comments: At this point I had several occurences of pain on different episodes, and each time the pain was relieved by moving my testicle and penis around and this gave the sensation of 'blood flow' being restored or improved, which often caused the pain to reside. I described it feeling like a dead-arm which progressively got worse in terms of pain severity until the problem was corrected. Doctors arranged to do an exploratory surgery to see whether they could identify any tissue damage and fix my testes in place to prevent any further occurences of pain. Still to this day I believe I suffer from the same issue. Something, is, for sure, moving around and becomes comprimised in some way which then contributes to a cascade of symptoms starting. My progression of symptoms always follows a set path: First, I experience testicular discomfort, or the sensation of something spasming or moving. I then get a strange feeling of tensemus, and discomfort which progressively turns to pain as time passes. After several hours of the testicle not being manually manipulated to turn it around, I start to notice that it feels firm and much harder than usual. At this point I notice distension in the epididymis, and pain throughout my spermatic cord, travelling up into my abdomen. Not long after these symptoms start, I begin to experience diziness, faintness, headches, nausea and sickness along with increasing levels of pain. If I continue to ignore my symptoms, eventually I experience extreme digestive upset, which leaves me unable to eat, and it starts to feel like my digestive system is working in reverse. At this point, I feel that I begin to suffer from obsctructed and 'sluggish' bowels, which do not properly move foods along. I have always felt this is attributed to some kind of knock-on effect of congested circulation, or the pain that the pressure in my stomach causes once my genital pain begins. Not long after, I am awfully constipated and unable to pass on the toilet. I then suffer terribly with trapped wind, which only adds to my discomfort and nausea. It also seems, that once my symptoms and condition flares-up to a specific point, I then start to suffer the 'vascular' issues which so often concern me. The more painful my testicle gets, the more likely it is that I am to experience leg pain, or notice discolouration of my feet (whether that be pale white from lack of circulation, or red or purple when they seem to have circulation again). My symptoms in my lower feet were once attributed to Reynaud's but this was ruled out by a rheumatologist. I was then sent to a vascular surgeon who ruled out vascular issues and ordered a scan to reassure me. However the scan came back saying the findings were indicative of 'small vessel disease' as they struggled to detect a pulse and the pulse they did eventually detect was too weak to take a reading. This has always made me wonder whether the twisting sensation I feel, and what feels like a blood vessel becoming obstructed, is causing my foot to change colour... or... whether the knock-on symptoms I experience after genital pain are contributing to constipation which is pressing on blood vessels leading down my leg and comprimising them? I imagine both or neither could be true at the same time, but I have often pondered if this is what is occuring inside me. Only once I correct the position of my testicle by rotating it by a degree which is way more than what I would consider normal, and other doctors have commented that they rotate more than they would expect, does the pain and all other symptoms reside. I often find that I experience almost instant relief- similar to when you would see someone having a dislocated joint put back into place. My symptoms reside almost instantly, and my guts start to rumble and gurgle as if they are waking back up, and then I am left having to repeatedly visit the toilet while all of my symptoms resolve. I then feel great again and experience little to no pain or discomfort, until the cycle of feeling like something is twistin or moving begins again. The feeling of my testicle spasming and moving only generally occurs when I am incredibly stressed and unable to relax my muscles, when I am sleeping, or if I was to accidentally knock my testicles or expose them to sudden extreme temperatues. Those are really the only triggers I have noticed. I am cautious about touching them too much because it constantly feels like they are 'balancing on the edge' and any slight disturbance or knock can cause them to suddenly start turning painful and sore. I have always found it incredibly strange, and distressing trying to communicate my symptoms. But I hope that this has explained it somewhat. I can certainly identify the exact blood vessel that casues my issues. It runs through my spine, through my buttocks, into the front of my pelvis via the back of my testicles and then through my penis up towards the glands. The pain I experience also extends into my spermatic cord and back of the testes, but is mostly centered around the base of my penis between my penis and testicles, and it travels deep into my pelvis.
First Orchiopexy and Exploration Surgery (Right). Whilst waiting for a routine operation, episodes continued to follow the same pattern and I was increasingly becoming distressed by periods of being pain free followed by sheer agony. The hospital agreed to bring my elective surgery forward.
Additional comments: I initially felt like the first operation went well and was a success. I noticed an almost immediate resolution of my symptoms and discomfort upon waking from surgery. I recall the surgeon saying how he too was impressed at the turnaround and was glad that it was a success for me. He arranged for a follow-up surgery to be performed as a precautionary and preventative measure on the other side, should this current outcome continue to be a success.
Septorhinoplasty to repair deviated septum and obstructed airway.
Additional comments: This was my second nose job, since the earlier one I had when I was a child. This one was also unfortunately unsuccessful at opening my airway and resolving my symptoms so it was scheduled for a repair 2 years down the line. I developed a break in my septum which was protruding through exposed skin inside my nostril.
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Taken into hospital with severe genital and stomach pain.
Additional comments: At this stage it was decided that an operation and exploration would be appropriate.
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No longer working, full time sickness and ESA
Additional comments: At a stage it became impractical for me to continue working. I was unable to sit down at my computer any more, unable to work. Maintaining contracts and relationships became impossible because I was always unwell, whether than be from nausea and sickness or severe pain, or simply digestive issues; it seems that I was never catching a break and the harder I pushed myself the harder I burned out. Eventually I realised that I was incabaple of continuing on the path I was on and had a bit of a mental breakdown as a result. I lost my business which I had worked hard to establish since the age of 15. I lost contracts. I disappointed clients and I lost my purpose in life. I applied for ESA and had to accept a much lower living quality as it was the only way I could get any respite from my symptoms. I do long to be back at work and to set up my business again, I just do not know when that day may come. I understand I may never get back to my old health, but, at a minimum I would quite like to not feel so distressed by my symptoms when in public. They often distract me so severely that I can catch myself walking out into traffic because I was more zoned into how much pain I was in. This is not ideal and I find it gives me lapses in my memory and concentration which are dangerous. Also, I really struggle to regulate my sleep, moods and emotions while struggling with these symptoms, and being able to commit to a regime or routine is impossible for me. I have to take my sleep and rest as and when I can get it and count my blessings.
2nd Orchiopexy and Exploration Surgery (Left). Routine preventative surgery and exploration of left side performed.
Additional comments: Again, I was happy with the outcome and felt like this had given me complete peace of mind and resolution of symptoms. I was relieved to no longer feel like my testicles would be able to twist on me, and was hopeful that I would no longer feel like I have to move them in order to stop being sick.
Period of high blood pressure.
Additional comments:
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Medications used at this stage were not effective.
Additional comments: At this time my medications were not very effective and my repeated bouts of pain and sickness was beggining to increase in frequency and severity. As a result my mental health suffered immensely.
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Symptomatic episodes return with a vengeance I was devastated when I felt the sensation of something twisting again. I was distraught when the pain returned.
Additional comments: I contacted the surgeon and explained my predicament and how, despite being fixed in place, my testicles still appear to move and rotate more than normal, in fact, since the surgery, they are a lot more mobile - despite apparently being fixed down. At this point I think the surgeon was in disbelief or not quite able to appreciate that I could still be experiencing pain. Despite the operations initially providing a period of pain-free resolution, the fact that the issues returned left me devastated and confused. I was worried about complications of losing a testicle or my fertility. I was also troubled by repeated bouts of severe pain that showed no signs of relenting, and which I did not know how to avoid or control. I was scared and I understand that at the time I was desperate for this issue to be resolved.
Reduced physical activity compared to what it previously used to be prior to injuries and surgery
Additional comments: When I was younger I used to be extremely sporty and active. I was always running marathons or at the gym, or taking part in sports or other events. I also did a lot of cycling and spinning. Since my injuries and operations have all mounted up and left me with long-standing pain issues, my physical activity levels have suffered drastically. Considering that doctors usually get concerned about people taking long-term flights without appropriately stretching or exercising, I am rather concerned that I haven't been able to be very active for many years now. My health is clearly suffering terribly as a result, albeit there is not much I can do because the more I exert myself, the more unwell I become.
3rd Orchiopexy Surgery, repeated on left side for the second time.
Additional comments: Sometime in around 2016 was my third and final orchiopexy to explore and re-fixate the left side. I had presented to A&E in extreme pain, as a friend who was a nurse insisted on taking me. A doctor came and asked my nurse friend to leave the room so that he could attempt to manually untwist my testicle. Upon trying to do so, my pain was instantly resolved, and he told me that this meant that I would be listed for surgery the following morning to re-explore and re-fix my testicle. Since requesting my medical notes, I can see that at the time, the doctor in question recorded in my notes that he was able to rotate my testicle beyond 180 degrees; far more than would be considered acceptable or normal for someone who's testicle was fixed in place by permanent sutures. Again following surgery I appeared to be symptom free for a little while. I was again hopeful that this would finally once and for all solve my pain issues.
Ongoing constipation and digestive issues occuring alongside genital pain symptoms
Additional comments: Alongside my genital pain I often experience accompanying constipation and digestive discomfort. My baseline nausea and vomiting goes from around a 6/10 to a 20/10 in severity. I am constantly feeling like I am spinning on the spot and dizzy-sick. I struggle to eat because my symptoms become so bad that it starts to feel like my guts are beyond full and are backing up the wrong way. I often eject food from my stomach or throw up extremely easily. One gastroenterologist I saw thought that my symptoms sounded as if I had sluggish bowels or some kind of functional bowel disorder. However, these episodes of sluggish bowels only seem to occur alongside severe genital pain. They often make very loud and audible gurgling noises, which sometimes sound like 'swooshing' or liquid being squeezed through a tight space, it sometimes makes a squelching sound too, but the sounds are extremely loud and much more audible than typical hunger sounds or stomach rumblings. There have been occaisions where I have presented to my GP in such a condition and told that I have an acute abdomen from an obstruction or blockage and have been put on high strength laxatives to help clear the issue. Often times the laxatives provide some relief, but ultimately my digestive symptoms do not fully resolve until my genital pain disappears. My genital pain seems to feed directly into my stomach area and causes major discomfort within my abdomen. It usually feels like the left side of my stomach is always tense, and I cannot relax the muscles of my stomach. It's almost as if they are protecting me from moving the area by staying stiff, it also seems to help prevent me from being sick, because whenever I consciously try to relax them I usually experience an increase in nausea. They also often ache from being tense all the time.
Ongoing acid-reflux and nausea and vomiting
Additional comments: Again occuring in symptomatic clusters are my episodes of extreme nausea and sickness. I notice that nausea is made significantly worse by sitting down for long periods of time.
Septorhinoplasty w/ right auricular graft to repair previous nose surgery.
Additional comments: This surgery was the most successful of them all at restoring my airway. Since then my left nasal passage has been much improved. It's still far from perfect, but at least now I can get a little air circulation up there, I don't seem to suffer nearly as many sinus issues. During the warmer months is when I face the most problems usually which I think is due to the humidity in the air. I would often bring up a thick jelly-like mucose substance which would be blocking my airways or nasal pasages. As soon as I clear it, it would start building back up again. This is an ongoing issue with my airways, I find that I am bringing up jelly-like substance more than what would be considered normal.
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Lots of ambulances, hospital visits, GP appointments. Throughout this time period I was in an incredible amount of distress.
Additional comments: This was perhaps one of the worst periods of my life. My symptoms had seemingly returned and the surgery had not quite given me the assurances and peace of mind that I had initially been grateful for. I was now experiencing the same symptoms as prior to surgery, albeit significantly worse and made more complicated by the nature of the surgery. Doctors were rightfully reluctant to perform further surgeries on me and cautious of causing any further injury. My care became very disjointed and inconsistent, and I struggled to get answers and explanations for things, causing me to feel increasingly more anxious and distressed by my experiences. I was eventually discharged from the hospital due to a 'breakdown in the patient and doctor relationship' which arose from the fact that I kept presenting with pain whenever I had an episode, and the hospital would admit me to a urology ward where they would get frustrated with me and tell me that they have already done all they can to help me and they are going to discharge me. Salford Royal Urology team became reluctant to continue to work with me or provide after care after my third surgery. So I was left without access to the professionals who knew the finer details of my surgery and my medical history, and instead left asking for support from mental health teams and therapists who couldn't treat my pain; they could only diagnose me with mental health issues. This was the begginning of the end of my life.
Diagnosed with chronic pain
Additional comments: I have always disputed this diagnosis, albeit, it is hard to disagree with at times. Although my pain is chronic, in the sense that it has been repetitively recurrent in nature and going on for a very long time, it has never quite met the criteria of being true chronic pain because my episodes luckily never last longer than 3 months. The most accurate description of my pain that I can come up with myself, is accute pain which is chronic in nature and has been unfortunately underinvestigated. I truly believe that there is a physiological cause and explanation for my symptoms, and how I can go for a significant period being pain and symptom free, but then suddenly be struck down by a cascade of debilitating and disabiling symptoms. It is the unpredictable and fluctuating nature of my condition which makes it even more difficult to live with, because every time I feel like I am improving and able to finally get back to the activities I once enjoyed, I am suddenly struck down by a period of significant illness again. It is like a merry go round of constant ups and downs, where one months I am not complaining of pain, and the next moment it is preventing me from being able to carry out every day tasks. I remain unable to sit down for long periods of time, and have to lie down in such a manner that prevents me from experiencing pain. There are very few positions that I can get comfortable in, even when I am not in pain, I am experiencing a baseline level of discomfort that most people would probably consider painful; however for me it has become a fact of life and I consider these days to be pain-free, even though to the average person they would not be considered as such. I only consider myself to be in pain when it croses an 7/10 threshhold, where 10 is the most unbearable pain I have ever experienced in my life, the type of pain that has me on the floor screaming in agony.
Swollen legs and abdomen, severe pains, discoloured feet & other vascular issues
Additional comments: Where my symptoms were once previously isolated to just pain in my genital and lower abdominal area, they seemed to be progressing to a stage where pain was now down my legs and through my buttocks - especially when sitting down. I now experience significant lower back pain, pain that runs down the inside of my thigh and hurts the most behind my knee, through my calf and into my foot and toe. I also have started to experience pains in my collar bone, arms and neck. I also get chest pain and discomfort which does not quite feel severe enough to be a heart attack, but certainly feels like my heart is being squeezed. Often it takes me by surprise and I jump up from my seat clutching my chest, but the feeling usually passes as quickly as it came. During each flare up of my symptoms, I continued to experience a distended abdomen which would always look like I gain weight incredibly fast, however, it would mostly feel like water or fluid trapped under my skin. It would be prickly and tender to touch my abdomen. It would be worst around my belly button area, as this area would often cause a white discoloured patch to appear around my belly button as if it was getting no blood flow. I also started to experience swollen legs each time my genital symptoms would flare up. The worse my symptoms got in my groin and genital region, the more my legs and feet would suffer. It would feel like a blood vessel behind my knee would get growing pains, and I would get awful cramps and pains in my calf muscles. They would often feel like balloons that are about to pop, and going onto my tip-toes or putting pressure on my calf muscles became painful. I would get really intense itching around the veins in my ankes and on the tops of my feet. I would also notice discolouration and skin changes on my big toe and the pad of the sole of my foot around my toes. It would look as if blood was not getting to the area properly. Along with these symptoms, I would experience a pin-prick type rash, similar to all other rashes mentioned, which would appear on the front of my shins, around my ankles, and on the tops of my feet. Sometimes it was like red-pin pricks, othertimes it was slightly brownish. Mostly however, it looked very similar to many tiny blood spots.
Subconsciously clenching jaw because of stress/pain causes cracked teeth.
Additional comments: At this point I went to see a dentist and was diagnosed with Temperomandiublar Joint Disorder (TMJ). I found that I was subconsciously clenching my jaw and damaging my teeth whenever I was in pain, and the same appeared to be true while I was unconscious and sleeping. This caused really bad jaw aches and pains which come and go depending on how much I am clenching my jaw at that time. He offered to refer me for surgery but so far we have taken a 'watch and wait' approach, as if often best. My dentist made me a mouth guard. The problem was, I snapped it several times in my sleep by biting through it. After only one week it was completely destroyed. He told me that in all his years as a dentist he has never seen someone go through a £500 mouth guard in the space of a week. He offered to rebuild it, which he did, however I continued to bite into it and would wake up with blood coming up from the back of my throat because I had gotten small pieces of plastic acryllic stuck. I no longer used the product after this and felt concerned that I was getting sharp pieces of plastic stuck in my throat.
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Colonoscopy.
Additional comments: Referred to colonoscopy which checked the lower section of my bowels for any signs of damage, but did not find anything. The report stated that they checked as far as the first flexure.
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'Lateral Infact' and 'Sinus Rhythm' discovered on ECG.
Additional comments:
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Megaloblastic Anaemia attributed to B12 Deficiency
Additional comments: My GP received a report which informed him I had Megaloblastic Anaemia, and he told me that this is usually caused by a B12 Deficiency. He did not do any further investigations. However, he did start me on B12 injections. Unfortunately, after finding them to be useful, this too was taken away from me after doctors told me that I didn't need them because I do not have a B12 deficiency.
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Persistent vomiting and nausea
Additional comments: I would go through continued phases of unbearable nausea and sickness, which would be so severe it would completely incapacitate me and render me unable to talk or move. It would literally feel like a fight for survival. The episodes of nausea and vomiting were so intense that I would feel like I want to avoid being sick at all costs, because once I finally start to be sick, it is so explosive and unrelenting that I struggle to breath. It is often the case that I wake up from my sleep already vomiting and suffocating on sick. This is way more extreme than regurgutation or acid reflux, it is physical, projectile vomiting which I wake up and only become consciously aware of when it is too late to even make it to the bathroom. This has affected my quality of sleep drastically and caused me to be anxious about waking up suffocating.
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Red pin-prick rash on upper chest and neck area.
Additional comments:
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Sudden seizures after pregabalin withdrawal.
Additional comments: At this point in my life, I started to have sudden seizures out of nowhere. Doctors attributed it to psychological distress and said they were pseudoseizures, however, neurologists treated me for epilepsy - just in case. Only after accessing my medical notes did I realise what the true cause was likely to be. At the time I was trying to come off Pregabalin, as I did not like the side effects or how addictive it felt as a drug. I have never had trouble with addictions or anything like that, but pregabalin was something else. I found myself shaking and trembling until I took my morning dose, and I recognised that this would only get worse as time went on. A neurologist or specialist wrote in my notes that he suggests my pregabalin be reduced by 25mg per fortnight at most. He wrote in my medical notes that sudden and fast withdrawal from Pregabalin is known to trigger seizures, even in otherwise health individuals. However, in a rush, a psychiatrist came a long and reduced me from 600mg a day to 0mg a day. This is when I had seizures. So although it is mostly labelled as psychosomatic or pseudoseizures in my medical notes, I believe that it was caused by the sudden withdrawal of pregabalin. Although they continued for a while, I have been fortunate enough to experience no seizures since coming off pregabalin and no longer withdrawing from it.
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Sore hands from dry, painful and cracking skin.
Additional comments:
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Pain and anti-sickness medications become difficult and impossible to access
Additional comments: I started to notice that I was being treated as if I was feigning my symptoms or malingering. I noticed doctors sudden reluctance to treat my pain or sickness. Instead I kept hearing a new line which was that I would benefit from 'therapy' instead of pain relief. At this stage I didn't know whether to laugh or cry, because I can understand therapy for someone experincing psychosomatic aches and pains. I cannot understand therapy for someone in excrutiating 10/10 pain which leaves them on the floor struggling to breathe and dripping in sweat. To me it has always felt like the equivalent of refusing to treat a broken leg, and instead referring the patient for therapy regarding the pain. The pain that I have been left in will be forever traumatic and will forever leave a sadness in my heart that medical professionals were so unwilling to help me. Being left in pain caused my suicidality to spiral out of control, beyond all reasonable means. I still struggle with it to this day, albeit, I choose to self-medicate as much as possible, rather than continue to beg a system for help which has treated me like this and shown so much disdain towards me as a genuine patient with genuine medical needs.
Diagnosed with Intermittent Testicular Torsion at MRI A&E, AGAIN.
Additional comments: This time a urologist came to see me at MRI Hospital A&E department and he diagnosed me as having a testicular torsion (intermittent) which had spontaneously resolved. He wrote this in my discharge papers and sent me home with analgesia.
Enlarged/Inflamed Prostate
Additional comments: Diagnosed with an enlarged and inflamed Prostate by Manchester Royal Infirmary after they did a CT scan with contrast dye to examine my prostate. The urologist said he thought the finding was unusual and unexplainable for someone of my age, but offered no investigaton or further follow up. At this point the consultant looking after me told me that my testicles are find and discharged me without follow up or any kind of treatment plan. I believe he may have referred me to the Mental Health Liason team because he was concerned that I was mentally unwell, however, the liason team cleared my Mental Health and told me that they did not feel it was a mental health issue. I was discharged again between physical services not wanting to take ownership of my symptoms or find ways to treat them, and mental health teams not knowing how to help me and telling me that my pain and distress is not a mental health issue. I was even more confused how depending on which doctor I meet, and who they speak to about me, I get a different diagnosis and get treated completely differently. Some doctors are willing to help me with my pain regardless of the cause, where others are more than willing to dismiss me once they say that it is not organic and all in my mind.
Private Urologist diagnoses 'Neuromodulation' and agrees that my testicles may still be over-rotating as I suggest.
Additional comments: At this point I went to see a private urologist. In hindsight this only added to my confusion and misdiagnosis. He wrote a clinical letter suggesting that he felt that my condition was called 'Neuromodulation'. However, every doctor and urologist that I have spoken to since this diagnosis has laughed at me and informed me that neuromodulation is a treatment, and not a diagnosis in it's own right. I soon learned that I wasn't actually diagnosed with anything and the confusing clinic letters left me even more bewildered. In emails to myself, the private doctor agreed with me that I felt my testicles are rotating too much, he said he may explore this in future and arrange investigations. It was at this point I could not afford to continue and had to give up on persuing my treatment and diagnosis privately. I could not afford to pay for a wrong diagnosis, and be left even more confused than previously about what was wrong with me.
Suddenly delusional?! NHS doctors diagnose me as 'delusional with nihilistic beliefs'
Additional comments: At this point doctors became unwilling to engage with me or investigate my concerns. Because my ultrasounds to my testicles were reported as normal (despite the ultrasound reports saying 'Please stop sending this patient for ultrasounds to rule out torsion - we cannot rule out torsion via ultrasound'). It is reported in my medical notes that the radiographers were saying this test cannot rule out the condition, and yet to my face urologists were telling me that this test is 100% proof that nothing is wrong with my testicles and the pain is essentially 'all in my head'. I strongly disagreed because still to this day, nobody has scanned or investigated the exact blood vessel or structures which I am complaining of hurting. All urologists have ever done is an ultrasound and leave it at that. I believe that because of my confusion, lack of anyone explaining to me, and my insistence that I believed something was wrong and there was something physiological accountable for all the sensations, swellings, rashes, pains and discomfort I experience — I was essentially belittled and called delusional in my medical notes. I had such awful things written about me, whether that be one doctor writing that 'Benjamin uses pain to illicit care and attention' or how several others seemingly participated in Chineese whispers; soon my medical notes were littered with mentions of 'delusions' and 'nihilistic beliefs' which completely made me sound irrational and as if my concerns did not warrant any type of investigation or explanation. I have never been as heartbroken in my life, as to at this point when medicine and the NHS did this to me. I hate the word gaslighting, but it's the only appropriate word I can use to encapsulate how I feel about this. All I have ever longed for is the fair opportunity to show how all my symptoms tie together, explain what I believe the mechanism is, and then work with scientists and acedemics to either prove or disprove my theory using scientific methodology and appropriate investigations. I do not feel like I have been given a fair shot and I have struggled to get my ideas across. I feel that I am much better at writing my thoughts down than I am at communicating face to face, and as such, I feel that doctors often get the wrong impression of me or interpret my frustration at my inability to communicate ideas as something other than what it truly is. I believe it is incredibly unfair to diagnose me as delusional or suggest anything of the sort, particularly along the lines of somatisation of psychosomatic disoder — BEFORE doing all of the appropriate tests and investigations. Diagnosing someone as delusional should be a last resort and a diagnosis of exclusion. It should not be used as a means to avoid doing the appropriate tests and investigations to prove otherwise. This causes me immense pain because I have countless scans, tests and investigations which have been done since being diagnosed as delusional, and each and every investigation I had had done has justified my concerns and given merit to my claims. None of them have proven that nothing is wrong with me and that I am delusional. It is so unfair for the diagnosis to come before the througough investigation. But this is why I am so unhappy with mental health services and Salford Royal Urology for allowing this to happen. It destroyed my life.
I became suicidal at this point. I felt like nobody was willing to treat my pain and mental health services were definitely not listening to me.
Additional comments: I was admitted to a mental health ward under the false pretenses of being told 'Please come into hospital, we don't want to label with you or diagnose you with mental health conditions. We understand that you are in pain and struggling with it, we understand that you are struggling to access treatment. We simply want to bring you into hospital to give you some respite and work out how best we can support you. This misinformation was obviously shattered when I realised that on just day 2 of admission, that I was being labelled with a 'Dependent Personality Disorder' because of my persistence at chasing up NHS services and writing complaints about my treatment. They felt that because I could not let go of the fact that my symptoms remain unresolved, that I am dependent upon services or something? I am not entirely sure. However, upon discharge I was told to ignore this diagnosis. When I challenged it, I was told by a member of staff that the diagnosis is simply a label used by admin staff and doctors to justify the use of an acute bed. They explained to me how the NHS gets audited from time to time, and, as such, they need to give valid reasons for giving away acute care beds. This staff member literally told me that this diagnosis is not my true diagnosis, it is merely to satisfy auditors and justify my use of an acute care bed.
Hospital provides me with surgical support bandages which help to support & reduce my pain.
Additional comments: The hospital I was at were kind enough to order me some of the bandages which help to support and reduce my pain levels. These are well worth the money, and are great at helping provide a little comfort.
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Foot changing colour still. Seems to restore blood flow after a hot shower.
Additional comments: I notice that my foot and big toe on my left foot continually goes numb, or sometimes incredibly tender and painful. It seems to alternate between being completely numb, and sore and achy. I see that the skin goes pale and white as if it is in shock, or is receiving no blood flow. It stays like this indefinitely until I either massage the area thoroughly, or, get a really hot shower to improve the circulation. It can sometimes be made worse by being in colder temperatures, but to be honest it seems to happen regardless of temperature. I have found that it most often happens when I am experiencing chest aches and pain in my groin area, which travels down my leg. It often affects my gait and ability to walk normally, causing cramps in the bottom of my foot and calf muscle. When my foot goes like this, the numbness causes me to walk funny because my legs do not quite feel like they usually do, it is a strange and foreign sensation.
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MH Inpatient Admission was a rough experience. At first staff treated me as a malingerer or feigner.
Additional comments: It took an incredibly unfair amount of time before staff on the mental health ward realised that I was not a malingerer or feigner, and treated me as such. I specifically recall how one nurse used to treat me incredibly unfairly and dispassionately. He went out of his way to refuse to give me my pain medications, making snide remarks about how I don't need them etc. Eventually, after witnessing the worst of my sickess and having to come to my rescue when I woke up choking and vomiting on sick, he realised I was not a liar. He came to my room that very same day and sat me down and said that he wanted to apologise for judging me. He promised me from that point forward he would never leave me without my painkiller or judge me. He couldn't have been any more apologetic and I was grateful for him owning up to his mistake and realising that I am just a genuinely desperate, unwell person trying to navigate a system which does not want to treat any of my symptoms, and is then choosing to medicalise and diagnose the distress this causes by blaming it on my mental health. It feels ignorant to me to fail to address the concerns which I say impact my mood, but then diagnose me even further for being distressed about this.
Photo of medicines precribed at this point...
Additional comments: Here is a photo showing the medicines I was prescribed and use to treat my symptoms. Most of these are empty boxes, however I use them to keep track of my medicine usage and as a record of my pain flare-ups. It is also useful to me to see what medicines I am using and when, otherwise it is easy for me to lose track of how things have progressed or changed over time. It also helps me to remember which medicines were effective and those which were not. At this point, the most effective pain relief I was getting during this period was from Oramorph for breakthrough pain and Zomorph for background pain. Ondansetron is also my preferred antisickness because it is 80-90% effective at preventing me from vomiting and stopping intense nausea in it's tracks. It is not always fully effective and sometimes does not work in time, but on the whole I find it to be a god-send and it is the most effective antisickness medicine I have found. I use the orodispersible version as I struggle to swallow tablets, and this version seems to be absorbed and gets to work within 10-15 minutes.
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Self-medicating with cannabis
Additional comments: Due to my difficulties in accessing fair treatment, and being treated like I was drug-seeking or a problematic chronic pain patient whenever I needed painkillers. I found that it was easier and less stressful to medicate my own pain levels with cannabis. I believe, this has been one of the best decisions I have ever made in my life. Not only does cannabis treat my physical pain symptoms, but it addresses my mood, my appetite, my sleep, my digestive issues and my nausea and vomiting. All around, it is like a one-trick pony that I am so grateful I discovered. It will come as no surprise, that my doctors have written in my medical notes that I 'abuse' cannabis and I am 'dependent' upon it. This is not the case at all. I have found cannabis to be a god-send, and I can only report positive effects. The only down-side to cannabis is the legality and financial implications, neither of which can be blamed on the drug itself. So for this reason I would like to make it clear to anyone caring for me that yes, I do use cannabis, but no, I do not abuse it. The alternative for me is to not use cannabis, and to struggle with symptoms which I do not know how to control, which hospitals have been reluctant to help me with, and be left in a trapped limbo land between some doctors telling me I am delusional and it's all in my head (because my medical notes incorrectly imply as much), or other doctors willing to help me and take me seriously. It is the inconsitency and how I am sometimes treated like a drug-seeker, and other times treated as if my needs are genuine and my pain is being recognised. One doctor will tell me I don't have a genuine need for pain-relief, while others acknowledge my pain and provide me with painkillers. I am sure any professional doctor is more than aware of the plight and stigma that chronic pain patients face when seeking pain relief, I doubt me explaining this is neccesary. Ultimately, it's traumatic and I cannot be angry at medicine, but I am sad that medicine has gotten to a position where any human can be left suffering, or left with the impression that they could be looked after better if they was a different person. I have had much resistance to my cannabis use over the years, from being told I will become psychotic, to having misinformation and mistruths written in my medical notes. However, I stand by my use of it, and I just want to be open and honest with anyone caring for me. I do not wish to withold information or lie to anyone. Cannabis helps me and I hope that, no matter what your personal opions are on the substance, you can at least hear me and aknowledge me when I say that I find it helpful in treating my symptoms. It was at this point that my cannabis use became more frequent and sustained. I do not feel that it is an addiction or a dependance, I am able to go without should I choose to; it is just that I then struggle with the physical symptoms which I use cannabis to mask. In the past I have demonstrated to GPs that going without cannabis is unhelpful to me. Previously, one GP asked me to abstain from cannabis use for 6 months, which I did, however, it ultimately caused me to become even more unwell, and I eventually returned to medicating with cannabis to combat the worst of my symptoms.
Proteinuria / Haematuria
Additional comments: Findings of protein++ and blood++ on multiple urine samples across a broad period of time between 2016 and Present Day.
Keytones in Urine
Additional comments: Findings of ketones in urine triggers a nurse at MRI hospital to ask whether I am diabetic. I do not recall any further investigations following this up, and I am unsure what the significance of having ketones in my urine is.
Epipoloic Appendagitis
Additional comments: Diagnosed with an episode of Epipoloic Appendagitis by Whythenshawe Hospital after they did a CT scan with contrast dye to examine my abdomen after a presentation to A&E with intense abdominal pain and vomiting.
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Left inguinal hernia diagnosed on ultrasound during an emergency hospital admission
Additional comments: On one occasion of extreme pain flaring up, I was taken into hospital via ambulance where an hernia was discovered in my left inguinal canal. I have often wondered whether this hernia plays a role in some of my genitourinary symptoms. I was eventually referred to a general surgeon. He was able to confirm via scans and investigations that I do have a small inguinal hernia. The consultant explained to me how it is usually the larger ones which cause the most pain, however sometimes the small are capable of causing just as much if not more pain, as they are more easily able to move and get trapped than a larger one. He also said surgery was an option, however, after discussion at length, we decided that it would be best to take a 'watch and wait' approach, and would only rush to perform surgery if symptoms became an extreme emergency, or were so obviously caused by a hernia that needed repairing that the surgery would be unavoidable anyway. I felt that this was the best approach given my previous experience with unsuccessful surgery on my testicles. He advised me of the symptoms to look out for: colour changes, intense heat, sharp and intense pains or inflammation and sudden onset of digestive pain or obstruction.
Urologists tell me I am not getting Testicular Torsion despite me asking why my ultrasound appears unusual (it seems to look more like a confirmed torsion ultrasound I found online).
Additional comments: During an ultrasound of my testes, a radiographer explained to me that he could see 'dark patches and striations' which are usually suggestive of vascular occlusion or damage. He said that it was hard for him to tell if this was caused by torsion but that it was clear evidence of the blood flow being restricted to my testicle. He suggested I follow up with urology for their input. However, when I did, it was essentially dismissed and I was told not to worry about it. What I really wanted to know is why the ultrasound scan of my testicle looks closer to the scans I found on Google which are of confirmed torsion & if I do not and never have had a torsion. I was confused and worried that something was being overlooked, or even if it was normal and simply a consequence of my surgeries, I would at least hope it would be acknowledged as a potential source of my pain, instead of the insinuation that I am somatising. For this reason I have always wondered why my ultrasound looks like this, despite doctors reporting in my notes that the scan was 'normal'. I obviously do not know how to fully interpret an ultrasound, although my untrained eye believes my scan more closely resembles a confirmed torsion.
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(Audio Recording) Urology no longer wish to work with me and tell me that I do not have hernias or any organic cause for my pain despite doing minimal investigations
Additional comments: Where once my urology surgeon consultant was telling me to 'go away and have children, and if you're still in pain in a few years come back and we can discuss removing them.' it no longer felt like they were on my team. I was told my surgeon had retired and was put under the care of Professor Clarke who, for some reason, from this point forward only gaslit me and dismissed my symptoms. Before retiring, the surgeon who performed my surgeries (Mr Betts) offered to redo a minor surgery to remove a permanent stich which was left rubbing my skin and causing me significant discomfort. However, he retired, and now urologists were now telling me that I was delusional for even suggesting the idea of removing my testicles to avoid pain, or for asking for the stitch to be repaired as previously promised to me. Now they changed their tone to say that all of my genital surgeries were unneccesary, and that there was never any evidence of testicular torsion despite them performing three separate operations on my two testicles. They denied that the surgeon who retired said what he said, and they refused to remove the painful permanent suture. They told me that I do not have any hernias (even though I had seen a surgeon at the hospital and he had confirmed it on a scan at the very same hospital), they ultimately dismissed any possibilty at all of my symptoms originating from an organic cause. They implied that it was all in my head and I was somatising, and that I suddenly needed the support of the Mental Health team. (However, at this stage the mental health team were also reluctant to help me with this issue, and they insisted they they were unable to help me with physical pain and sickness, they can only diagnose and treat mental distress that comes from it). So ultimately I was left between a rock and a hard place, with no way of seeking answers, no way of getting treatment, and only confusion and pain to remind me of my whole ordeal.
Urologists at Salford Royal now gaslight me whenever I attend A&E with a pain flare up; and refuse to even lay hands on me or examine me before already walking in the room claiming they're going to discharge me. They then threaten to get security and try to snatch my phone from my hand to force me to delete audio recordings which highlight their mistreatment of me (click to listen). You can plainly hear the patronising and dismissive tone of voice; without ever meeting me before or so much as saying hello - the doctor had already decided to discharge me based on my prior history and not on my current presentation (she had not met nor examined me yet - an examination was only performed after she made me end the recording and I highlighted how I felt it was dismissive to have been in the mindset of discharging me before even coming into the room and examining me herself - when her junior doctor clearly had enough concern to go and fetch her). The doctor even went out of her way to emphasise how it was 'quite the statement' that Salford Royal urologists are refusing to investigate my symptoms or cooperate with me. No other patients get spoken to like this. Only me - because Salford Royal urologists have gone from supporting me, to now systematically destroying my confidence and gaslighting me as much as possible. I'm not sure what I have ever done in my life to deserve this; but whatever it is, I am truly, genuinely sorry and all I want is the opportunity to communicate my concerns and be communicated back to in a way that I understand and helps me to ease my fears - to this day this has not happened since my contact with Mr Betts was rescinded. I appreciate that when I am distressed I may appear confrontational or frustrated, but I promise you this is not my typical self; this is a version of myself fuelled entirely by pain, fear and PTSD. I don't believe I have ever been rude or aggressive or anything that might explain why doctors would refuse to help me. All I have ever been is scared and hurt. Coincidentally - it was a police officer to told me to start covertly recording - it's not something I would have personally thought of doing before being told to do so by an officer.
I hope one day to speak to Mr Betts again and ask him how my care went from 'go away, have kids, come back when you are over 30 and if this is still going on we can remove them' (where I at least felt listened to - despite never wanting my testicles removing - it was nice to know I had options should the worst continue), to then realising that it has continued to cause me problems but now urology do not want to work with me, claim that I never needed the operations and that they were unneccesary, say that I am mentally unwell for suggesting that I would like to consider removing my testicles to be pain free (despite that being suggested by Mr Betts previously), claim that my pain is not coming from my testicles, and insinuate that I am mentally unwell and/or delusional. How did we go from state A to state B? What went so wrong with my care that it came to this? Was it something I did wrong? I don't think I will ever get answers but all I know is that it broke my heart, my character and my soul; and I have never recovered from this. It consumed my daily existence from this point forward. I have struggled since this day to fully trust doctors and I try my damned hardest to put my prior history aside but there is something in my heart that is always fearful of being gaslit and not believed. I know my body and I know myself. I know I am an honest person. I know that I have never lied to doctors about any of this. I don't want to get philosophical but if there is a God, or this whole life turns out to be a simulation - I know that whoever is in control will confirm that I was not lying about this, and that all I ever wanted to do was get the help I needed - but I became desperate and may have come across wrong or gave a bad impression of myself whilst in pain. I am sorry to every doctor who is reading this, please know that I always respected you and your position - even if it may not appear so at face value, I struggle with face to face communication a lot more than I do writing down my thoughts, and somewhere in the chaos I may lose myself. I am sorry if anything I have said or done has caused me to be treated like this. I wish I could take it all back and go back to a time before I was told Mr Betts retired.
My GP at this time gave up on me, and began to withold medication. Changed GP Surgery.
Additional comments: I noticed by asking for my medical notes that they also started to report my symptoms in a manner that suggested I was feigning it. There was many instances of doctors leaving comments suggesting that I am mentally ill, somatising, or malingering. One doctor even wrote that he felt that I wanted to sue the NHS to get money out of them — this is so untrue, all I have ever wanted is fair treatment and my right to access the services I feel I am entitled to, without being treated unfairly or feeling like my concerns are being ignored in the process. At this stage I left the GP practice due to a breakdown of relationship.
Vascular ABPI Investigation finds evidence of 'Small Vessel Disease'
Additional comments: I was referred to a vascular surgeon because I had concerns that my pains in my veins were some kind of vascular issue, mainly I was conscious of conditions like vasculitis which affect the vessels, and I wanted to see a specialist who could help me to understand why I am experiencing cramping of my calves and bottom of my feet, pains, and other various sensations like burning, prickling, itching and coldness or numbess. Ultimately I do not feel that he understood my concerns properly, as he wrote in my discharge letter that I do not suffer with calf pain or cramping, which is untrue because that is the one of the main symptoms I went to see him with, and it is cramps in my calves and feet which wake me up at night and cause me increasing pain the longer I try to walk or exercise for. Also, he referred me to have an ABPI test done to check the pressures in my ankles to rule out vascular disease. Upon examination the radiographer who performed the ultrasound said that she could see no evidence of any serious vascular disease or injury, although she did tell me that she noticed my pressures were a little bit different. As I was putting my socks on, the radiographer noticed that my foot had changed colour. So, so got me to take my socks off and performed a few more tests. Mainly, she got me to exercise and took pressure readings of my big toe before and after. Only from doing this additional exam after noticing my foot change colour, did she conclude that the pulse in the foot which had changed colour was too weak to take a reading, she told me that this was likely due to small vessel disease and this is what she would be including in her report. I asked her whether I should be concerned because I have already been discharged from the vascular clinic, to which she told me; 'Yes, I would be concerned. This is not a normal finding and it is certainly something I would chase up with a doctor for further investigation and an explanation. However, once I tried to contact the consultant vascular surgeon again, I was told that I was already discharged and he could therefore not help me. Despite me bringing to his secretary's attention the contradictory nature of his discharge letter which says in essence 'Nothing is wrong, I'm not sure why this man is anxious' and a laboratory examination which he ordered to reassure me which says that the opposite is true and there was evidence of 'small vessel disease'. This has left me confused and anxious since 2019. I still have no explanation for why this happens to my foot. I can only hope that I do not have an untreated vascular condition which is slowly but surely wreaking more havoc on my system as time goes on. I'm a true believer in prevention being better than a cure - and I would hope that the NHS would work with me to fully investigate and identify the cause of this issue at an early stage, rather than dismiss and ignore it for a few more years only for me to present later down the line with more serious complications if it turns out to be something that should not have been overlooked. I feel that I require further clarification and reassurance about this from a doctor whom would be willing to explain what this means to me and what the implications are for my health - and what I need to do about it.
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Fight to have Ondansetron prescribed as it was the only effective medicine I had found up to this point.
Additional comments: As time went on and my nausea and vomiting became more chronic in nature. I started to ask whether it would be possible I could use Ondansetron, as this is what hospitals and paramedics always gave me. I reasoned that, if it avoids me having to present to A&E, or repeatedly pestering my GP; then it would be a worthwhile move. I trusted that having my own supply of ondansetron which I can use on a PRN basis would give me a better quality of life and leave me with something to treat my nausea episodes. Eventually my request was forward to the CCG for special consideration and it was approved after I saw a gastroenterologist who also diagnosed a hiatal hernia and approved my ongoing use of ondansetron to combat my digestive symptoms.
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Blood vessel trauma during blood tests, phlebotomist says my veins are terrible.
Additional comments: At this point I had a blood test and unfortunately the phlebotomist had a really difficult time finding a vein that would puncture without rolling or rupturing. After many repeated attempts, I experienced a swelling on the back of my hand. This wasn't too painful and soon resolved, however, it leads me to question whether repeated cannulation and injections could cause damage to my blood vessels over time. As such I am now reluctant to commit to a blood test unless I personally feel it is super neccessary. I have generally tried to avoid injections because my blood vessels are so tender and sore, it has made the experience of having needles incredibly uncomfortable.
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Pain in superficial blood vessel behind back of knee. Plus return of lower leg swelling.
Additional comments: I began to experience pain in a very specific superficial vein behind my knee. It feels really sharp and painful, almost similar to what adults tell you are growing pains behind your knees when you are a child. It is tender and hot to touch and extremely sensitive. The vein also appears discoloured and is more visible than nearby vessels. My lower legs also started to swell again and seemed to be retaining fluid. Despite not wearing tight-fitting socks, my legs had swollen to the point where the cuff of my socks were digging into my legs. On photos it is not so obvious, however it's still visible how my legs start to puff out after my socks and are bulging.
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GP gives a trial of Praxilene (Naftidrofuryl) to combat vascular symptoms.
Additional comments: This proved to be really effective. The only problem was, when I went back to refill the script after reporting that I felt it was working, the doctor told me that he was unable to continue to prescribe it, and he would need to refer me to a vascular surgeon to approve the ongoing prescription and diagnose the issue. Unfortunately however, this did not happen and I was never prescribed this medicine again.
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Discoloured patch of pale skin appears on genitals
Additional comments: Similar to the pale patch I develop around my belly button, and the discolouration in my left big toe, I develop discolouration on my genitals in one patch that becomes white, and improves if I warm the area up by soaking in warm water.
Compression stockings help with swollen legs and pain symptoms
Additional comments: A nurse provided me with some compression stockings to take home, which have provided great relief during times whenever I have swollen legs and ankles. Around this time I also notice that on my right shin, several of the veins are becoming prominent and often become itchy and painful. There is also one particular spot on the front of my right shin which becomes incredibly hot and painful, and is tender to any kind of touch. I also get a pain behind the shin bone in the same spot, deep inside my leg. The worst pain however is in the front of my right shin about half-way down; which in the photos below would be the blood vessel which is circled in the middle of the photo.
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Start of chronic and long-standing eye issues
Additional comments: Around this time was the beginning of my currently chronic and long-standing eye issues which are recurring on a monthly-bimonthly basis. There's a pattern of symptoms flaring and resolving which interestingly coincides with my other flare-ups of symptoms, which is what has led me to believe they may be systemic in nature or somehow connected to the rest of the issues I have going on inside my body. It sure feels related because I also get similar lumps and spots as I do on my eyelid down my back in a very particular pattern, and strangely, pressing on these spots causes pain to travel along what must be a nerve or a blood vessel, and it eventually travels up to my eyes or down to my genitals. It is incredible strange, and I'm sure reading this sounds unusual, however, it seems to be true. I have often wondered if it is something to do with my lymphatic drainage system, which is perhaps becoming overloaded or is not transporting fluid around my body as proficiently as it should be, and because of this, I wonder whether these break-outs of spots and acne-type lumps and other blepharitis-type instances are possibly related to my lymphatic system not working effectively. For reference, I have included a photo which shows the first recorded presentation of my eye issues, and also, a photo showing what my eyes looked like just a month before this date. The appearance of my eyes has never quite returned to how they were before this started, even when the swellings reside, they look sore and with really prominent and visible small reddish-purple blood vessels. It seems to affect both eyes intermittently and independent of each other. I also start to experience problems with my vision, particularly with focusing and blurring of text.
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Find relief from using hirudoid cream along painful and itchy blood vessels
Additional comments: A doctor prescribed some hirudoid cream for me to try to get relief from the itching and pains in my veins. It is amazing. I have continued to use it whenever they become increasingly painful, tender or itchy. The relief is incredible, it makes my whole body tingle. It's a better relief than I've even found with painkillers at times, it literally fixes the pain and itching almost instantly.
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Continue to experience psychological distress & mental health issues
Additional comments: I continue to be plagued by mental health distress, notably anxiety, and panic like symptoms, relating to frustration and stress. At this point I was struggling with my emotions and what felt like a traumatic experience of trying to navigate the healthcare system with minimal support, whilst feeling that my concerns were repeatedly falling on deaf ears. I began to get the impression that doctors only wanted to tell me that my symptoms were psychosomatic, and no longer wished to do investigations or help me to work out realistic and practical ways of improving my quality of life. My healthcare became non existent and most of my health concerns remain unchecked to this day. Throughout this period I was seeking the support of mental health teams to address my distress, and to help support me to communicate better with clinicians who I did not want to be frustrated with but could not help myself because I struggled to get my message across, and whenever I tried, it was dismissed as being anxiety. Unfortunately, mental health teams did not prove to be very helpful and at times it felt like they were actively working against me by diagnosing me with labels and conditions which would further the claims that I am delusional and attention-seeking. Some care coordinators wrote such things in my notes. My trust of mental health services ultimately was diminished and I struggled to engage with a service which did not take my concerns seriously. Instead, it felt like they were gaslighting me further, and that, nobody was listening to me. All of my concerns are legitimate and all of my symptoms are genuine. I would not seek the help of a medical professional if I was not absolutely sure that it was neccesary. The more desperate I got, and the more my mental health suffered, the more severe were the labels that were applied to me. At one stage I was branded as having Emotionally Unstable Personality Disorder or Borderline Personality Disorder, and, unfortunately I feel this is another misdiagnosis. I was only diagnosed as having dependent personality disorder after what was explained to me as a mistake, but then, after my second admission, it was changed to BPD, and I was now being treated even worse. It seemed that the more desperate I got, the more I asked for help, the more I was rejected... the more helpless I felt. I began to feel like a burden and like I would be stuck this way forever and the thought of that genuinely makes me consider suicide. That is not because I have a personality disorder. That is not because my suicidality is a threat, or an offense to your position. It's simply that the distress my symptoms cause me become so unbearable, and are such a block to me getting on and living my life, that they have rendered me trapped. I often think my suicidal thoughts are a direct reflection of the distress I face, and are simply my subconscious mind's way of reminding me that I am not happy about this and I must fight to change it, because I cannot bear to live in a world that leaves me in physical pain, but then tells me that if I feel suicidal because I am fed up of my pain, then I must have a personality disorder. It devalues my experience of pain and it discredits my personal beliefs on why I feel this way. I believe it is unfair to suggest that the reason I feel this way is because of my personality or anything else. I can promise any medic looking after me that it is not. Any times I have felt suicidal, I can only describe it as feeling lost and helpless, seeing no way out, and just wanting the pain and sickness to stop. I'm sure most people can imagine what prolonged pain and sickness would do to their own mental health. It is for this reason that I stopped engaging with mental health services, because they were not helping to address my needs, and the more I asked them for support - the more they used it against me to label me with conditions which would justify their refusal to investigate or treat me. There is much literature surrounding how patients with BPD are treated as if they are feigning symptoms, and are discouraged from seeking medical treatment. The stigma I have faced since being wrongly labelled with this diagnosis has followed me and continues to be the single most traumatic thing to ever happen to me. I would swap this label for anything, I detest it with every oucnce of my being. The distress it causes me I will never be able to put into words. I do not have a personality disorder. I struggle with physical symptoms which impact my mental health and cause me to feel helpless at times. That is the truth. I am not a horrible guy, I am not manipulative, my suicidality is mine alone and is not a threat to anyone else, I do not struggle to maintain friends because of my personality, but rather because my physical conditions prevent me from living my life to the fullest. In short, please believe me when I say that I do not have a personality disorder. If you ever find me presenting in a distressed state, there will usually be a driving force behind it, and it is often something that is beyond my control which is impacting on my life negatively, such as being wrongly diagnosed or not having an explanation for scan results. It just so happens that because it has gone on for longer than the average person would ever expect, it has become more than a typical frustration to me and has actually become a source of anger and hurt.
Request discharge from Mental Health Services
Additional comments: After feeling let down one too many times by psychiatry and mental health services, and getting the overall impression that no matter how much I try to ask for help, I would not get the support I needed; I formally requested to be discharged from my CMHT and the care of MH services. To this day I have managed without them. My mental health still continues to ebb and flow, as is natural, however, my overall baseline and feelings of frustration are relieved because I am no longer fighting against a system which I do not feel is backing my corner. As much as I am labelled with BPD, I truly believe that I am more likely to be on the autistic spectrum than I am on the personality disorder one. Autistic traits very much describe and encompass a lot of my symptoms and difficulties, and would explain many of the problems I have faced when engaging with medical professionals, my experience of pain, and my distress at being unable to communicate myself properly. I find that I am much better at writing my ideas down than I am at speaking them, and I feel that clinicians often get the wrong impression or interpret my struggles as anxiety or some other form of avoidance. It is not the case, it is more that I am conscious that my ideas are often not taken very seriously even though to me they feel important. I am actually considering asking for a re-assessment and to have myself assessed for autism, as I feel that this is important to do before accepting a diagnosis as serious as EUPD/BPD. My whole life my friends have described me in ways which would be considered 'neurodivergent' by medics. I actually believe a lot of my problems are because doctors feel I am attacking their professionalism or clinical decision making & and I don't mean for it to come across like that if it does. I am simply trying to fully understand in a way which dispels any anxieties I have and leaves me able to move on with my life. Every stone that I leave unturned, and every missed scan report that goes unexaplained, leaves me with one extra point of conflict that causes me mental discomfort. I can only rest when I feel like things are fully taken care of, that is generally how I have always been, so given how the nature of my condition has got worse and worse, and my treatment has declined also; I am able to understand why I have grown more prone to burn-outs and outward expressions of frustration. My complaint was ultimately dismissed and nothing came of the points I raised. Nobody spoke to me about it or asked me to elaborate or go into detail about the ordeals I have faced. It felt like a dismissive end to a traumatic experience.
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Continue to be plagued by bouts of extreme nausea and sickness, mostly waking up from sleep already vomiting.
GP removes me from surgery due to a 'breakdown in relationship'.
Additional comments: This was caused because I was left chasing up the scan which said I had small vessel disease, and despite the medicine being taken away which helped me with the symptoms - nobody was providing me with a diagnosis or any form of treatment, and I became increasingly frustrated that my symptoms were affecting my sleep and driving me insane, but nothing was being done to help me. My GP felt that no further investigations were neccesary, but I was sure that the chapter was not closed and that this was an issue that should not be ignored; particularly when combined with all of my other symptoms. I started to do my own research and educate myself and started to learn about how systemic and rheumatological disorders can cause clusters of symptoms like mine. It is for this reason that I wanted to persue my symptoms further to try to find something that might help me.
Register at new GP Surgery.
Additional comments: My new GP reassured me that they would help to investigate my health concerns. They also told me that they did not support my Emotionally Unstable Personality Disorder diagnosis and would work with me to move past this issue. My first impressions were great.
Intense itching keeping me up at night.
Additional comments:
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Vomiting what paramedics told me was blood because of it's coffee-ground like appearance. Paramedics took a sample with me to hospital.
Additional comments: Unfortunately the sample was lost and never investigated and I was dischaged without an explanation for why I was vomiting what they told me was blood.
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Receive a letter a week after being in hospital due to vomiting blood; which stated that 'my calls to emergency services were being monitored by the police' and that if I 'continue to waste the time and resources of the emergency services' then I would be 'dealt with via the usual police and court process'. I am NOT sure what this related to? I have never misused or called 999 excessively. In my whole life I can count the number of times I've personally dialled 999 on one hand.
Additional comments: From this point on I had to ensure I was discharged myself from all mental health services and will never engage with psychiatry or my CMHT ever again. I will not have my distress pathologised and then threatened with police action simply because the NHS has failed to gaslight me into magically making my symptoms disappear.
Sudden and sharp decline in oral health, many cavities appearing despite my best efforts.
Additional comments: It seems that excessive vomiting and acid-reflux is destroying my teeth at an alarmingly fast pace. My teeth used to be relatively fine and I have only ever had 2 fillings previously, however, now I have an unreasonable amount of cavities cropping up, and huge holes missing from most teeth. My teeth have become disgusting and I am ashamed of how they have turned out, however, I have sadly been unable to do anything to prevent it from happening.
ECG continues to show Incomplete RBBB and Sinus Rhythm - a new finding only on latest ECG's - this was not present on my ECG's earlier than around 2018.
Additional comments:
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Pin-prick rashes and strange reddish-brown discoloured marks appearing around ankles and feet.
Additional comments:
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Pin-prick rashes also occuring on upper chest, collar and shoulder area in large quantity.
Additional comments: Recurrently comes and goes at various times, usually lasts for a few days up to a week or two at most. I'm not sure it's ever lasted longer than a few weeks before resolving.
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Strange and painful blood-shot appearance of white of eye, appearing to be a capillary + more eyelid swellings.
Additional comments: This was very itchy and painful. Not long after this happened, I had another episode of swelling in my eyelid. Due to all of the repeated swelling and then rapid resolution, it feels as if the tissues of my eyelid are becoming rubbery and rigid. They no longer feel soft and loose like you would expect for the soft tissue covering your eyes. Interestingly, I also get a similar problem with flexible soft tissue elsewhere in my body; I experience a similar feeling of thickening and rigidity of the skin on my foreskin too. It feels like my skin in these areas has lost it's suppleness if that makes sense.
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Repeated strange acne-boil like spots which appear in specific places down the length of my spine and back of my neck.
Additional comments: Pressing them is incredibly painful and tender — they feel unlike any other spots or boils I have encountered previously, it feels like they connect to something deeper.
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Continue to have episodes of swollen legs and ankles, with strange marks and skin discolouration.
Additional comments:
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Gastroenterologist diagnoses sliding hiatal hernia.
Additional comments: A barium-swallow and X-ray scan concluded that I have a sliding hiatal hernia. Whilst the consultant was not entirely convinced that this hernia would account for all of my digestive symptoms, he nonetheless approved the ongoing use of ondansetron to combat nausea and vomiting. There was no suggestion of a review or follow up. I was discharged from gastroenterology.
GP suggests that my pain and other symptoms is Functional Neurological Disorder
Additional comments: In a similar thread to feeling like my pain and chronic pain was being dismissed, my new GP at this time suggested that he felt my symptoms were a condition called Functional Neurological Disorder, and he suggested that I buy a book called 'It's All In Your Head'. After reading the book, I was even more convinced that this label did not apply to me. My GP told me that he was wishing to refer me to his friend who was a neurolgist at the hospital where I have had all of my previous bad experiences. I tried to resist this referal by turning it down on the basis that should FND be an accurate diagnosis, then, technically I should be able to be referred to any hospital in the country, and after doing their own investigations, if the diagnosis is sound, they should arrive at the same conclusions.
Reach out to Dr. Taryn Youngstein (Rheumatologist - Imperial College)
Additional comments: It was shortly after my GP suggesting that he wanted to diagnose me with FND, and me feeling that this would be yet another misdiagnosis, that I reached out and found the help of a rheumatologist at Imperial College in London, Dr Taryn Youngstein.
Appointment w/ Dr. Taryn Youngstein (Rheumatologist - Imperial College)
Additional comments: I had explained my symptoms as best as I could, and I am grateful that she is currently working with me to at least investigate some of my troublesome symptoms. Whilst I understand that she may not be able to provide me with answers for everything, if any at all, I am at least grateful that I have found a doctor who is not dismissing my concerns and is using science to help settle and reassure me. Together we have already identifed a few points of interest; Low RBC, High MCV, Low Vit B12, Lymphopoenia, and low IgM levels w/ all other immunoglobulins within normal range. Dr Youngstein arranged a referral to Moorfields Eye Hospital to rule out any eye inflammation or uvitis, which they was able to do so. I am currently awaiting a follow up and further blood investigations. There are a few more things that Dr Youngstein would like to check and rule out.
Lump appears under jawline on right side.
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Change of GP Surgery
Additional comments: A fresh start with a new GP whom I am hopeful will be able to treat me fairly and without prejudice, and can support me to begin to address all of my physical health needs and concerns so that I can start to get my life back and improve my health. Unfortunately, I was again removed from my previous GPs practice register because they said that the relationship had again broken down and had claimed that I was abusive on several occasions where all I did wrong was get upset. Up until the complete breakdown of our relationship, I was never abusive or said anything inappropriate or untoward. After being accused of being absusive, I was incredibly frustrated and upset because I was never abusive, and this caused me to actually appear to become even more frustrated with the NHS. I have had such an ordeal trying to get treatment, that when medication is being witheld from me, and I am unable to eat or sleep or get comfortable as a result; I really struggle to remain calm and collected. That's not to be an excuse for anything, but, it's exhausting being unwell all the time and having to fight and jump through hoops just to be heard and have my symptoms addressed. Worse still, when I begin to feel like a burden and start to have thoughts of ending my life, I then have this turned against me and I am told it is because I have a personality disorder. The whole cycle is unfair and I am penalised simply for trying to seek fair medical treatment and discover a cause for my problems that I can take steps to improve. I feel patronised and as if doctors believe I am malingering or feigning my symptoms simply because I want drugs most of the time. I have spoken to many chronic pain patients who understand and face the same stigma themselves. It's super unfair on patients to leave people suffering and in pain, and then medicalise the distress this causes them by diagnosing them with mental health issues. It has been the single most traumatic experience of my life; where medicine is supposed to save you and be heros, I have been left feeling hurt and abandoned by services which no longer wish to support me. I don't believe that I am a horrible person. I do however struggle with frustration and I can sometimes struggle to remain calm when I am struggling to get my point across and feeling like the person I am talking to is not understanding me or taking my concerns as seriously as I am. I also get frustrated when my medication that keeps me well is withheld from me, as this causes me unneccesary suffering which can be easily avoided. The less I have to keep suffering my symptoms, the better my mental health ultimately becomes. It is a vicious cycle that I cannot escape from, and one that I am rarely the winner of. No matter how much I try to explain my concerns and get 'the bigger picture' across, I feel like nobody has understood my issues. Many doctors have taken me from A to B, but as of yet, I have struggled to find a doctor who can take me from A to Z and get my life back on track. I do believe it is possible, I think I've been unlucky and often misunderstood and misdiagnosed.
Strange chest pains and aches occuring infrequently but suddenly.
Additional comments: I have started to experience sudden and strange chest pains and aches in my upper left chest area around my heart. It feels as though my heart is suddenly being squoze, and I jolt up from what ever position I am in. I am instantly made aware of it and it causes a sudden intense feeling of panic, but then the pain and sensations disappear as quickly as they came. This continues to alarm be because it is completely random and sudden, and hurts a lot. I am not neccesarily thinking it is a heart attack per say, but I do have genuine concerns that this might relate to my heart. Given my recenty developments of an abnormal ECG, I would eventually like to get this properly checked out and investigated. The pain and discomfort also seems to occur around my front left collar bone area.
Rash on face across nose and cheeks, with discoloured purple-tinted eyelids.
Additional comments:
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Sudden intense pain down left forearm.
Additional comments: Pain travels throughout entire length of the blood vessel beneath the cream as shown in picture. Causing intense aching and weakness in my arm. Sometimes it feels like a gnawing, battery-acid type pain, other times it feels hot and heavy. For the most part it is tender yet prickly. Touching it feels strangely numb and gives an ice cold sensation that runs along the length of the blood vessel. Hirudoid cream again proves effective at treating this type of symptom, especially when it wakes me up from my sleep as it did this time. I have also noticed some difficulty breathing normally. I am not struggling for breath per say, but I feel as if I am breathing increadibly shallowly, and not quite taking in enough oxygen, which keeps leading me to gasp for air periodically. I am also getting a deep heavy ache in my right lung. I am also experiencing aching and tightness in my chest-area, which feels as if my heart is being squeezed. I really should get this checked out at hospital although I am reluctant to go only to be told I am wasting their time.
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Coasting along and finding significant respite from my medical cannabis treatment
Additional comments: Since reaching out to a private medical cannabis clinic in 2022 and obtaining a legal prescription in order to help manage my pain and nausea; my quality of life was massively improved. Pain was no longer a cage that I was trapped inside, and it became possible for me to tolerate (albeit through gritted teeth), but cannabis definitely helped take away a lot of the mental distress, panic and PTSD-like symptoms that are caused to me by what I perceive to be medical gaslighting. I managed to keep myself well for 2-3 years and avoid having to access mental health services - I found that I was no longer in and out of hospital, and the spasms which previously would feel like my testicles were pulling up into my body and twisting were much reduced. Eventually however, the financial toll of paying for my own private treatment began to significantly impact me. I was spending 80%+ of my monthly income solely on my private treatment. As a last resort I could maintain this; but ultimately this means I have to forgo paying my debts and addressing my financial needs; instead all my money goes towards remaining well. After some time of managing like this and a few years of respite from my symptoms, I began to struggle to afford my monthly script and was noticing that my symptoms were becoming undertreated again. I do however still believe that the 2-3 years I had on medical cannabis were the better 2-3 years I have had in my life. Instead of wishing I was dead most days and being a burden to the NHS; I was able to take tiny steps to reclaim some of my independence and take part in some previous things that I avoided due to pain. I was able to look after my dog and nurse her to her natural death; and I wouldn't have had the energy or emotional reserve to have done this without the support of my private cannabis clinic. For that I am eternally grateful to them.
Due to my private treatment being so helpful, my current and new GP (Monton Medical Practice) never really got the opportunity to know me, or my history, and so I can appreciate that at least from their perspective - a lot of my current episode will have come as quite a surprise to them, and they will also be thrust into the deepend of trying to manage my current crisis, whilst also trying to get to the bottom of my medical history - which is no easy feat. If my old GP surgeries had found out that I was able to maintain myself privately using my private script; they would probably be very shocked, as my contact with previous surgeries was quite intensive. When I was having to take ondansetron and morphine all the time, plus having to always convince doctors that I'm not drug seeking - it became such a horrible and miserable existence. Private treatment gave me a new lease on life where I was able to address my symptoms, and in doing so, helped me to realise that I'm not crazy after all; and there is absolutely nothing wrong with my personality when I am not in pain and suffering. But, that should not be a surprise to any doctor. Ongoing severe episodes of pain is enough to send anybody over the edge and cause mental health distress; pain and mental distress go hand in hand.
Reach back out to NHS asking if any kind of support/plan can be put in place because I am struggling to maintain the cost of my private prescription
Additional comments: Towards the end of September of 2024, I realised that I was struggling to maintain or afford my private script; and so, I realised that, however reluctantly, I would have to return to the NHS and ask my GP whether any plan or support could be arranged for me, in the knowledge that I have treated myself privately, but I am struggling to continue. The GP I saw, Dr Ong, was actually quite supportive and fully documented my concerns and issues into my GP record. He arranged a trial of Baclofen for the spasm-like sensations in my genital area. I was honest enough to admit to this doctor that I have been considering suicide; and that these issues drive me to contemplate it heavily. I also took two bottles of partially used oramorph which had expired ~2 years ago; to show that 1) I was not abusing it and still had left over supply from 2+ years ago, and 2) that I didn't feel particularly safe around large quantities of opiates at the moment; and so I asked if he could take the two bottles off me and make sure that my access to opiates is not neccesarily blocked; but at least monitored - and not given super large quantities which could be dangerous in a sudden overdose. The doctor seemed reasonable and supportive of my concerns and request.
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Blood tests continue to demonstrate Low RBC & Macrocytosis
Additional comments: Originally identified in 2017, I continue to be showing signs of Macrocytosis and low RBC as evidenced by blood tests and repeat letters from Rheumatologist consultants (both Hammersmith, London and Whythenshaw, Manchester hospitals). Now being investigated for Intrinsic Factor Antibodies (Pernicious Anaemia), also my B12 injections which were taken away from me a number of years ago have been reinitiated - based on what I have read on the subject it often apparently takes a number of years for a true B12 deficiency or malabsorption to resurface after stopping B12 injections. I don't know how serious long-term macrocytosis can be or whether it could explain any of my more bizarre symptoms; however it appears that I have been experiencing this for at least 7+ years now.
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Social Services contact me
Additional comments: By this point it was clear that I was struggling. Multiple people and agencies had contacted Social Services and reported concerns about my welfare and ability to manage on my own. Social Services contact me offering me support. I explained to them how, that, whenever I have accepted the help of mental health teams etc in the past; my care suddenly rapidly declines, all my symptoms are blamed on malingering or mental health issues; and I end up being gaslit and fobbed off. They promised me that they would support me to advocate for me and address my physical and health needs - offering to put me on a waiting list for an assessment. They contacted my GP for more information about me.
GP writes factually untrue statements in my medical record
Additional comments: Having been contacted by Social Services, and them explaining to my doctor that my bank had reported concerns for my welfare to them; Dr Rhodes (a doctor whom I have never met, spoken to, nor had any dealings with) proceeded to tell social services that there is evidence that I am 'manipulative, drug seeking for opiates and playing services against each other'. I discovered that he had written this about me only by accessing my medical record via the NHS App. This was obviously extremely distressing for me and immediately made old traumatic experiences and my prior distrust of the NHS and doctors gaslighting me back to the surface. The immediate knock-on effect to my mental health from discovering that doctors were writing such malicious and untrue things about me not only offended me to my core; but it basically made me realise that doctors are never going to be willing to take me seriously or work with me because my symptoms are not at all text book, and would require intensive investigation and cooperation from medics in order to get to the bottom of what is truly going on. I realise now the NHS will never want to work with me. Having had these things written about me has knocked my confidence tenfold; and has immediately reignited the medical gaslighting which I so desperately had to avoid previously in order to protect my sanity and mental health. After complaining about how inappropriate and hurtful and factually untrue the doctors comments were, I eventually called up enough times that they agreed to get the doctor to call me and explain himself. He didn't so much as apologise, but he did admit that he would remove the incorrect record from my medical notes.
I would like to believe that this doctor simply misinterpreted what Dr Ong wrote about me previously when he wrote that I said that 'all of my old GPs used to hate me' - however, I would hope that this is a reasonable statement given that 2+ GP practices have now kicked me out of their care and removed me from their patient list because when my distress becomes most apparent, then I imagine that I become quite difficult to appease. That is not intentional however, that is raw distress which I have minimal control over. It is like Medical Gaslighting-induced PTSD. If I did have control over it, I wouldn't be so desperate as to beg for help for this long. I can, perhaps understand, how a GP may misinterpret this and think that the patient is attempting to be deceptive or manipulative into 'befriending' their new GP and hoping that they prescribe drugs - but this just was not the case at all (as I hope is evidenced by reading what Dr Ong originally wrote about me in the 27th September 2024 entry), I was after all, brutally honest and upfront about my struggles (I hope this is how the relationship with your GP is supposed to be). I hate to think honesty is perceived as manipulation.
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Access to Medical Record + History Revoked
Additional comments: Within no less than 30 minutes of ending the call to Dr Rhodes, I logged back onto the NHS App to double check that he had infact removed the factually incorrect record from my notes. However, I was sad to discover that instead of removing the incorrect record; my access to my own medical notes had been restricted. Where previously I could see all of my medical history and everything that doctors were writing about me -- I no longer could. It was now hidden and/or redacted from view; and I could no longer see anything about myself. I spent a month complaining about how hiding the truth from me, failing to openly communicate and lacking transparency is unhelpful to someone like me; who likes to be involved and proactive in their care; because without being my own advocate, I have found that my healthcare and quality of life suffers as a result. It's for this very reason that I like doctors to be truthful and honest with me; to my face. No matter how serious it is; if what they are saying is truthful or has at least a semblence of truth to it - I would never challenge that. I would only challenge a doctor if I find that what they are writing is unhelpful, or factually untrue.
Attend MRI Hospital A&E after GP instructed me to go due to coffee grounds vomit
Additional comments: On the 22nd October 2024 my pain and sickness had gotten so bad that I was vomiting what my GP described as 'coffee grounds vomit' and he instructed to go to A&E immediately. I did so; and was almost instantly gaslighted. I was kept in A&E for 12+ hours, offered no pain relief, no antisickness and was then discharged at 4am with no way of getting home; and it took me 8 hours to somehow limp myself home from the middle of Manchester at 4am in the morning with only shorts and no wallet or money. Eventually at 11am I woke up in a bathtub with an empty bottle of morphine beside me and no recollection of how I got home, nor any recollection of how I ended up in the bath asleep. Urologists at the hospital gaslit me and told me that my pain and nausea was not caused by my genitals (it absolutely definitely is) and then referred me to gastroenterology, who, at 4am came into my cubicle and simply discharged me with no explanation of why I was vomiting blood, no explanation for my pain and no investigations done beside a CT scan. Nobody addressed my pain or nausea and I was dischaged in a worse position than I attended. I became quite suicidal it seems; and the whole time I realised only afterwards that the police were looking for me and made contact with me due to concerns for my welfare.
Gastroscopy - sliding hiatal hernia re-confirmed & 4 biopsies taken from duodenum
Additional comments: One of my really supportive and helpful GPs, Dr Gilani, agreed to refer me under a 2 week cancer pathway to fast track a gastroscopy to try to see if there was an obvious cause for my coffee grounds vomit. From what I understand the scan was relatively clear, but 4 biopsies were taken to check for signs of Ceoliacs/Crohns. Forgive my personal biases; but in the absence of an identifiable gastro-related cause for my persistent vomiting episodes accompanied by testicle pain; then, perhaps, it's not entirely crazy for me to think that my ongoing genital pain and symptoms are contributing to my poor gut health and unrelenting nausea episodes?!
I learn that my previous surgeon who originally diagnosed and treated me has not infact retired, but still works for Salford Royal as a consultant urologist.
Additional comments: I discovered that I was previously lied to or told factually untrue information when previously I was refused appointments or consultations with the doctor who originally diagnosed and operated on me. I was told he retired and therefore could no longer see me or have input. This turns out to be untrue. I have recently discovered that not only does he still work there; but he still has the same medical secretary - Andrea. It has saddened me even more to learn that doctors who previously were performing surgeries on me now actively avoid me and dodge me in order to avoid any accountability. I hate to be paranoid, but I often wonder if this is because on paper surgeons like to have a success rate percentage for their operations; and if they start admitting that surgeries they did years ago resulted in unfavourabale outcomes that ruined peoples lives - it might put a blemish on their otherwise perfect medical career. I often wonder if this is why Mr Betts has avoided me? I hope that's not the case. But I can't really understand why a surgeon would diagnose and perform surgeries and then suddenly avoid the patient altogether and provide no further follow up or input besides gaslighting and dismissing the patient.
Urologists, Hospitals and Doctors continue to gaslight me and refuse to work with me to identify a cause of my symptoms
Additional comments: Despite my new GP Surgery (mostly) trying their best to support me... Urologists are now at a stage where they do not wish to work with me - at all. They insist that because they have done three operations and fixed my testicles into place; then this categorically means that my pain can not be coming from my testicles. They offer absolutely no explanation as to what might be causing my pain; they only gaslight me and tell me its NOT coming from my testicles. They might try to gaslight me and call it chronic pain; but it cannot be that either; for the only thing it truly can be; is acute pain which flares up suddenly and has been ignored for so long that it happens on an almost seasonal basis; that now it is simply acute flare ups that are chronically ignored and heavily underinvestigated. In a fairytale world; one might be able to dismiss my genital and groin pain as 'chronic pain' as a result of my prior surgeries and experiences - however, this would not explain the discoloration of my feet, the vascular issues I appear to get around the rest of my body, it doesn't explain my repeated swellings or rashes, it explains nothing. 'Chronic pain' is now being used as a scapegoat to hide behind to refuse to investigate any of my symptoms, in much the same way that my previous diagnosis of anxiety was used to blame a lot of my symptoms on somatisation or anxiety. It appears to be the case that the NHS does not like investigating things.
I want to be allowed to end my life now
Additional comments: Having been on such a complex and emotional rollercoaster over the past 8+ years; time has taken its toll on me. Where I was once a young, happy man, with my whole life ahead of me - I've now grown into a miserable older man whose body is falling apart, and who has struggled to get the help I so desperately needed in order for me to get my life back on track. Things are too far gone now for me to ever recover. My whole life remains in tatters. I have beared the horrible experience of chronic pain, persistent nausea and vomiting and medical gaslighting for far too long. At this stage I am now planning to take steps to end my own life. So far I have planned how I am going to do it, but there is no immediate risk or date in place. I get the feeling that it will be quite a sudden and impulsive decision once the moment eventually comes; but deep down I know now that this is not a decision due to being irrational or mentally unstable. I honestly, hand on heart, believe that 99% of people would end up suicidal if they had to go through the ordeal I have, and which I continue to. I now believe in rational suicide. Most people find that their nightmares end when they wake up from their sleep; whereas mine only just begins.
The way I see it, only one of three scenarios can be true: