My PN journey with Dr Michael Durtnall (Sayer Clinic)

[Eloise]

I could hardly wait to post this review of the unbelievable results I have experienced after just one week of treatment for pudendal neuralgia by Michael Durtnall at The Sayer Clinic.

In terms of my journey so far: I am 27 and a few months ago injured myself doing a lunge at the gym. I realised immediately it was nerve damage (as I had slipped two discs when I was 13) but this pain felt different. I have spent the last few months unable to work doing the rounds of expensive Harley Street surgeons. They initially insisted that the pain was from my previous back injury (even though this hadn't bothered me for years), but as my symptoms worsened they couldn't explain them. I was getting increasingly frightened as my pain grew out of control (I could hardly walk and was in constant agony which was making me yell out loud at times) and I wasn't getting answers. First I had injections in my spine and then my knees, which were expensive and to no avail. Another surgeon said the problem was that I was too highly strung (I was obviously anxious about my condition) and as a result my central nervous symptom had gone into overdrive. He prescribed me Lyrica which at one point made me go deaf and my symptoms were still deteriorating. Worse still, his diagnosis made me feel like I had done this to myself. After three A&E trips due to side effects from various treatments (including a terrifying stomach bleed), I Google'd my symptoms and when I read about pudendal neuralgia I knew this had to be at least part of it. My heart sunk as there is so much coverage of the horror stories and it felt like a life sentence at 27. I was already severely disabled and the thought that this condition is progressive and my pain could actually increase was unfathomable.

I found Dr Durtnall's details on Pudendal Hope and booked in the next day. I was a total state when I arrived, in agony and terrified. He was immediately different to the other doctors in that he really listened and was so sympathetic to my condition. He x-rayed me and diagnosed me with pudendal neuralgia. He also picked up a trapped nerve in my spine that the Harley Street spine surgeons had missed, and explained the implications of a birth defect in my spine (lumbarisation of the S1 joint which has caused a number of follow-on issues which are interlinked with the PN). He assured me that my condition is absolutely fixable and that I would make a full recovery in a matter of months (the issues with my spine adding time to but not preventing the recovery). Initially I was skeptical given the terrible PN stories I had seen online and my pain levels, but after just one session of manipulation of my spine, coccyx and pelvic floor I was able to walk smoothly out of his office and down the road. I couldn't believe it. It was pouring with rain but I didn't care - I hadn't walked for months and I felt like I had been given my life back to me. I have seen him everyday for a week now. On Wednesday it took me 1h30 to walk to the clinic. By Friday it took me only 40 minutes and it was an enjoyable walk.

I can't believe how far I have come in a week. There are times when I am walking that I have no symptoms at all which I just couldn't have imagined a week ago. I have a few months of recovery ahead but overall I feel 50% better. Dr Durtnall focused a lot on my posture as well as the manipulation, and people have already commented that my body shape has changed. I also feel so much better emotionally - firstly for having a sympathetic audience, but also for the encouragement I receive in every session. I no longer blame myself for this injury and in fact I see it as a blessing - I understand from Dr Durtnall that due to the birth defect in my spine this most likely would have blown up when I was heavily pregnant and he assured me that if I see him when I am expecting we can take the precautionary measures to ensure that doesn't happen!

I think it is so rare for a doctor to have such a genuine academic passion for their field alongside such a fantastic level of pastoral care for patients. He is truly a gift to the medical profession. I really don't know what would have happened to me if I hadn't have found him. I was so far beyond breaking point and Dr Durtnall said he worried when he saw me that I was just days away from being admitted into hospital in agony (which would have landed me back with doctors who didn't understand my condition). I told him I was already worrying about him retiring but he assured me he is never stopping!

I will keep you posted on my recovery but I was so keen to share this in case there are others out there despairing and not knowing which step to take next - a week ago I was at the lowest moment of my life and I feel like I have had my life given back to me.

[Eloise]

An overdue update - I am really happy to report that as of the end of January my pudendal neuralgia symptoms and coccyx are 99% gone. I don’t even get pudendal pain sitting, whereas in December I only had to sit for about 5 seconds before hell broke loose. I now only feel a slight twinge when my back arches incorrectly, usually when I am standing or lying on my back (I have been working on correcting my overly arched back with Dr Durtnall). My constant coccyx pain has also gone and I’m no longer ‘aware’ of my coccyx like I used to be.

I am still going back to the clinic three times a week to receive treatment for my disc, but recovery for that was always going to have a longer trajectory. I can’t actually believe how bad it was in December and where I am now.

Throughout this experience I have spoken to other people who have had spinal injuries and it really puts into perspective the quality of medical care I have received from Dr Durtnall in comparison to their stories (both NHS and private treatment stories). I’m hopeful that having been educated on posture, strengthening exercises and activities to avoid that I won’t ever go through this again... but if I do I at least know where to go!

[Eloise]

Another overdue update. It has been a bit of a rollercoaster... Back in October for my back and pelvic pains I was prescribed Naproxen by my GP, the number one cause of stomach ulcers, which is why it is always prescribed with a strong antacid. My GP did not, I got a stomach ulcer, and I have been taking the antacids since as my stomach still is very sensitive. Shockingly, the antacids caused a latent worm infection, Ascaris, that I had caught travelling in Myanmar two years ago to become symptomatic as the antacids made my small intestine a better environment and so the numbers increased. My GP insisted I only had a bacterial infection around my anus, despite me explaining how I had been vomiting and experiencing burning wriggling sensations at night. 40 minutes after I saw my GP (who had examined me) I saw Dr Durtnall who I explained my symptoms to. He examined me and said the words that I can still hear: “I can see some worms”. I was horrified and went absolutely hysterical. He and his receptionist were very understanding and tried to calm me down. I went back to my GP who insisted I only had a type of innocuous work that children commonly catch. He gave me medication and my symptoms continued to worsen. I went back for three increased doses, which resulted in me passing some worms the length of my forearm - it was terrifying. By this point too I had developed breathing difficulty, chest pains and I was struggling to focus my left eye - I connected the dots and panic set in. My GP nearly fell out of his chair when he saw the worms and sent me as an emergency to the hospital for tropical diseases. Appallingly they misdiagnosed me initially and no doctor looked at the dead worms which the nurses took away and sent to the lab. Ascaris is notoriously hard to diagnose using traditional lab tests, which only test for live worms or infective eggs. Ascaris worms are dead if they leave your body and any eggs that do happen to pass in stool only become infective to humans once they have been in the soil for 18 days. You catch it from eating food that was grown in the soil and which isn’t properly washed or cooked. The difficulty in detecting is why it is so dangerous and the “smoking gun” is the dead worms. From the point it becomes symptomatic, it can lead to brain damage, respiratory failure and blindness in weeks if not days because the larvae leave your gut and travel through your mucus tract to your lungs, brain and eyes. The hospital called and said the tests had come back negative, I was gobsmacked and asked how that was even possible, and they acknowledged that a doctor should have made a visual ID of the sample. They however would only offer me a consultant’s appointment in three week’s time. Desperate I turned up at the emergency clinic again but they wouldn’t see me. In the meantime I had matched the worms on Google and I realised I had Ascaris and was in big trouble. I was, after a week’s delay, diagnosed by a professor at the same unit I had to see on a private basis who took one look at the video I had made of the worms (I took a video because I didn’t want anyone to think I was crazy, it was just unbelievable) and said: “It’s Ascaris. You need to take Ivermectin immediately. How is your breathing? What about your eyesight? Is there anywhere else you think they may be - don’t worry I won’t think you are crazy”. He said I should have been given Ivermectin as soon as I went in which was very frustrating to hear.

Sadly this is not where the drama ends! After I took the first Ivermectin pill I had 4 days of hell: it slowly paralyses the worms over 4 days and they “resist” (shudder). I was woken up in the night by movement and pain in my not only my gut by eyes and sinuses. It was the most psychologically terrifying thing I have ever been through. I took the second Ivermectin pill on day 7 and felt awful. All my skin began to feel like it was crawling and I couldn’t keep down food. I went back to the professor who said he was confused by my symptoms but that some types of Ascaris don’t react to Ivermectin but they weren’t his specialty. He recommended another doctor who it transpired had retired. Over the course of the week I felt worse and worse and I got to a point where I couldn’t keep down water. I then went very tanned - people were asking if I had been on holiday. I eventually went to A&E where they ran some basic blood tests on me and I was admitted. The A&E doctor said my liver function tests were “mental”. It transpired that the Ivermectin has damaged my liver. The crawling sensation in my skin turned into an intense itching all over my body which is typical of liver damage. I spent a couple of days on a drip and it took about two weeks to start to feel normal again.

I am not sure it would have ever occurred to me that I had a parasitic infection had it not been for Dr Durtnall! God knows where I would be now... another debt of gratitude incurred.

Back to pudendal matters: I went back to work on 9 May (after 6 months off for my spine and pelvic injuries). I had a special ergonomic chair and standing desk installed. However by midday I got a searing radiating pain down my right leg which wouldn’t go and over the course of the next week it spread to my left leg, my lower back and I even started getting pudendal stabs in my groin. The pain was constant even when lying. I was in an absolute panic two days ago as I tried to walk down the street and I just could not continue. I got in a cab from the side of a street a spinal surgeon who referred my MRI and said he thought I had slipped two discs. I was devastated. The MRI showed in fact that my previous L4 disc bulge had gone back in (thanks to the worse I had been doing with Dr D) and I had torn L5. It didn’t include my pelvis. I saw Dr D this morning and he suspected the pain in my legs and groin was due to my sacroiliac joints dislocating: this can pinch the nerves coming out of your spine and your pudendal nerve, so it often shows the same symptoms as a slipped disc. He said he has had patients be carried in in agony due to a dislocated sacroiliac joint and they walk out down the road. I was skeptical and said “I bet I’m not going to be one of those patients”. He manipulated my joints back into place and lo and behold, I walked smoothly down the street. My pain is down 90% from this morning when I was writhing in bed on my back like a dying insect (my boyfriend’s words).I have some flickers or nerve pain left in my legs but nothing in my groin. My sacroiliac joints feel sore but it is just inflammation / stiffness which I would take any day over nerve pain. The surgeon pointed out the L5 rupture which makes sense as I do have a sensitive patch right over that area, but that seems to be it. Anyway, another big thank you to Dr Durtnall!

[Violet M]

Hi Eloise,

That sounds like an absolute nightmare with the ascaris. Sounds like something out of a horror movie! Glad you figured it out in time to get treatment and that you are doing better overall.

Take care,

Violet