My Pudendal Neuralgia Vulva Hell: Treatment with Dr Durtnall

[janesmith]

At the age of 15 I had the constant feeling that I needed to pass urine, or at least that is what it felt like. I had the constant desire to try and pass urine even when there was none there. This caused a large amount of discomfort and led to multiple doctors’ appointments that resulted in being prescribed 3 types of antibiotics for various urine infections even though no infection ever appeared in a sample. During this time the pain in my vulva increased, until I was so uncomfortable that being at school was difficult and passing urine made me cry. My condition deteriorated quickly, the pain was almost unbearable and I stopped attending school. I was put on multiple strong painkillers which numbed some of the pain but made me lethargic and dazed. Once a urine infection was ruled out as a cause I was transferred to the gynaecology department at the local hospital. They were unsure what the problem was. During the next few months I had an MRI of my spine (not including my coccyx) and a biopsy on my vulva. All of these things caused me a lot of upset, physical pain and were fruitless.

Once the gynaecologist could not work out what was wrong he became angry and often said that I was clearly making this up for attention, or that I was lying about my virginity. At this point I was terrified, nobody knew what was wrong with me and I was being accused of inflicting this debilitating pain on myself. I was lonely, cut off from all my friends and in pain all of the time. As well as the pain in my vulva I began to feel it in my coccyx, my groin and my abdomen.
From then I was transferred to a dermatologist who said that it was clear my problem was eczema, after weeks of trials and tests with no improvement I was transferred to the Orthopaedic department. At this point I was bed bound, barely eating and honestly wanted to end it all. I had forgotten what it was like to not be in pain. My vulva felt like it was burning and was red raw (or as my doctor described it, it looked like a “volcano of doom”). My groin ached and felt like something was crawling underneath my skin. My abdomen throbbed and I was constantly cradling my tummy trying to hold it all together. Passing urine hurt and my bowels became painful and erratic. At this point it felt like the doctors had given up and my appointments got further and further apart as I was passed around departments who had no idea what to do with me.
I was now in unbearable pain, had missed months of school, lost all contact with my friends, been told it was all in my head and had to hear multiple times that there was nothing anyone could do to help. This “mystery” aliment was having a massive effect on my life but also on my family. My sisters barely saw me and when they did I was on too many very strong painkillers to engage with them and in too much pain to leave my room, let alone the house. I’d keep them up at night with my crying and their lack of power to help me scared my younger sisters and frustrated my elder one.

My sister and mum searched on line for hours for answers, they looked at every forum, every help site, every odd bit of advice. We tried everything but were at a complete loss. Then one day my sister came across Dr Durtnall’s Sayer Clinics website. They read the information about vulvodynia and sacroiliitis and everything clicked. All the pain, all the symptoms that seemed unconnected and had baffled all my other doctors were now being explained and made sense. We made an appointment for the next week and my mum and dad helped me into the car. I cried all the way to London, wincing over every bump in the road. It had been months since this whole ordeal had started and I had completely given up hope, but my sister was adamant that I try Dr Durtnall out. When I arrived my mum filled out a form and we went in for my appointment. As soon as we began talking to Dr Durtnall it was clear he was listening to everything I had to say and made no judgements of me.

Dr Durtnall's investigations showed evidence of previous injury to my coccyx, with sacrococcygeal joint retrolisthesis, one-sided sacroiliitis and pudendal nerve entrapment with inflammation in my bladder, vulva, lower abdomen, inner thighs and groins. At 15, I had no idea what any of this meant but it was such a relief to finally have an answer and to be looked after by someone who finally knew what was wrong with me and a possible cure.
I visited Dr Durtnall twice a week for a month and he treated me with sacro-coccygeal and sacroiliac joint manipulation, giving me regular exercises to do. Within weeks I was feeling much better, I was able to move again, the pain was less constant and I was able to wean myself off all the pain killers I was on. I finally looked more alive again. I continued to visit Dr Durtnall for two years, with my appointments becoming less frequent as I became stronger.

It is now 6 years since this happened. I sat my GCSEs on time, I took my A levels, I went to university, I have trained as a teacher and I have just started my first job. I have been able to get my life back and to return to normality. While I have had some relapses in between, I am now much better and know exactly what to do when the symptoms return.

If any of my story sounds familiar to yours, firstly I am very sorry, no one should have to suffer with such pain, and secondly please don’t give up, find people who can help and if you can, visit Dr Durtnall. While I was sceptical at first that anything could fix my problem, I dread to think what would have happened if I had not gone to see him when I did. If you are in a similar position to the one I was in I would also recommend visiting a physiotherapist who specialises in joints. While I don’t think I’ll ever be “normal” and I’ll always have painful days, I want to stress that there is an answer and that there is help. You don’t have to remain a medical “mystery”, you don’t have to be helpless and you can get better.

[Violet M]

Jane, thanks for your touching story. I love reading stories where people get out of their private hell like you did. It sounds like you have been through a lot but I'm glad you are doing well now.

I have to be careful what I do also but at least I can have a life now and enjoy things, where before there didn't seem to be any point in living. Congratulations on getting your degree and your first job!

Wishing you all the best,

Violet

[wannagetbetter]

Janesmith - If you are still out there would you mind coming back to the forum and letting us know how you are doing? I ask because I am truly interested in the adjustments Dr. Durtnall did and how much a part of your healing was due to them as something similar has been recommended to me and it makes sense. Thanks! I really want to believe the posts about Dr. Durtnall's successes but it is slightly off-putting that his patients only post once. I am sincere in wanting info.

[janesmith]

Hi. I am still out here and have sent you a message to answer your questions and explain some more about my treatment. I'm sorry for disappearing, like most of Dr Durtnall's patients I am doing better now so reliving all the pain I went through is quite an ordeal. It took me about 3 weeks to be brave enough to post my story. Also with Dr Durtnall I have found something that works over a long period of time. I wrote one post because I wanted to be sure of my advice and only suggest something I know relieves the pain and does so consistently. Please feel free to ask me any questions and I really hope you start to feel better soon.

[JaneSmith1]

Update:
I thought it would be a good idea to update my post to say how I've been this year.

I had a fall at Christmas and I dislocated my knee, this caused some issues with my hip as I was walking badly and an awkward angle.
This was quite scary as once my hips went, my spine started to hurt and all my symptoms started to return. I find that if I have a bad day my symptoms can start to spiral and all the memories of the original issue come back.
I went to see a physio in order to fix my knee and was also recommended a tens machine to help heal the damage. I found this really helpful and have since used it on my back to help with that pain too.
I am "lucky" that I have had this pain for a long enough time to be able to manage it well. As well as my recent tens machine find there are a few other things I use to manage my pain on a regular basis.
I bought a thumper sports massager 10 years ago and mine still works really well. It is great for numbing the areas that are causing pain and I can use it on my back and my hips easily. I have found that with this odd and confusing condition it is nice to be able to deal with my pain myself and to be proactive when I feel it is getting worse.
I also have a foam roller that looks a bit like a swimming float. I have found this really helpful to loosen my muscles and at nipping any issues in the bud.
I tried to use a foam wedge cushion, but I found that it didn't work as well for me as it did for other people. Instead I use a balance cushion from time to time and have found a few exercises using it which really help strengthen my core and alleviate pain.
As well as trying to prevent flair ups myself I have found that a few well timed visits to Dr Durtnall can help keep my condition manageable. As I said in my original post, once I'd seen him once I began to feel much better. So if anyone is sceptical or unsure about whether to see him, I'd recommend giving it a go once as you will know whether it is the right thing for you. I can understand peoples reservations and I do have to save up for each visit as it is tight on my teacher salary BUT I can honestly say that I don't know what I would have done with out him and it scares me to think about it. I was in such a dark place and while I still have issues I am much better now and able to live a normal life.

[MelodyW]

Hi Jane,

If you're still around on this site, can Dr. Durtnall still help if bilateral SI joint dysfunction and scoliosis are involved?

Thanks,
Melody

[JaneSmith1]

Hi Melody,

I was not too sure so I asked him and he is confident he can help. He said that In terms of expertise in sacroiliac manipulation and treating scoliosis he completing 7 years of research at Great Ormond Street Institute of Child Health for his PhD. I wish you the best and hope this helps. Let me know if you have any other questions.

All the best,

Jane