Treatment for Pudendal Neuralgia from Michael Durtnall

[dcf]

During the summer of 2016, I was training hard for a long distance charity bike ride when I gradually developed pelvic pain. At first this was intermittent but over the course of a few weeks it became constant and I sought help from my GP. So began an incredibly long, frustrating and demoralising period of my life as I battled and struggled to seek both a definite diagnosis and effective treatment. Initially, my GP sent me for an X-ray of my pelvis and when that didn't show anything, she referred me to an orthopaedic consultant. He ordered an ultrasound and an MRI scan and and when these didn't identify any problem, he concluded that it was a muscular-skeletal problem and said to take Ibuprofen regularly until the pain and discomfort subsided, discharging me from his care. The pain and discomfort didn't subside and completely ruined a holiday.

Three months later I went back to my GP and this time she decided that the problem could have a nerve element and referred me to a neurologist. After another MRI and some nerve conduction tests, she diagnosed mild pudendal neuralgia, said there was no treatment and prescribed Gabapentin to help with the pain, discharging me from her care. Again, I was on my own with the outlook being that my only option was to try and control the pain symptoms indefinitely and that any kind of permanent treatment was not available. I started to trawl the internet to find other solutions and several times read that physiotherapy could help patients with pudendal neuralgia. I found a physio near to me and booked myself in. She used a combination of external massage, exercises and acupuncture, identifying that my sacroiliac joint was also affected and needed attention. By this time, I had increased my dosage of Gabapentin but she told me to discontinue that drug and to ask for a prescription of Diazepam instead due to its muscle relaxant properties. I did as I was told. After six months with this physio I had occasionally felt some significant relief but the problems would return with a vengeance and I would have days when I was in almost unbearable pain and just want to cancel all work and social commitments and "hide"! Eventually this physio concluded that she had exhausted her knowledge and treatment of my condition and that I should seek a referral to a gynaecologist.

So, 18 months on from when the pain developed, now I was on a referral to my third consultant. He examined me internally, said he could find no abnormality and basically said "You've just got to put up with this, there's no treatment", referring me to a pain management consultant. Reluctantly I took up that option. The pain management consultant immediately berated my GP for prescribing me Diazepam, told me to come off that and go back on Gabapentin. He also advised having a pudendal nerve block, more as a diagnostic tool than therapeutic, and suggested I look into the possibility of pudendal nerve decompression surgery in Bristol if the nerve block gave a positive diagnosis. After researching decompression surgery, I was very downhearted and depressed. I went ahead with the nerve block, which gave relief for about two hours, and decided to just go back on Gabapentin, at a higher dose, and see if I could just manage the pain that way. The pain management consultant told me that there was NO maximum dose for Gabapentin - with hindsight, I'm not sure that's right!

During all this time, whilst trawling the internet, one name and clinic kept cropping up - Michael Durtnall at the Sayer Clinic in London. By October of 2018, I was in a very dark place. I was on 2700mg of Gapapentin daily, in a lot of discomfort and pain every day and had only been given what seemed quite major surgery with an alarmingly low success rate as a "way out". We were going to London anyway for the weekend and I bit the bullet and booked an hour's consultation with Michael. Sitting in the waiting room with my husband, I was incredibly apprehensive. However, within ten minutes of meeting Michael and telling him something of my symptoms and my journey so far, all apprehension was gone and I knew that I was finally talking to someone who understood and who had the confident knowledge and skills to address my condition and work towards effective management and treatment. At that first appointment he took two X-rays and examined me internally and externally; from that he identified and diagnosed the main roots of my problem and described a treatment plan in detail. He also advised me to "ditch the drugs" because they were not going to help me long-term and were contributing to my low mood. I walked out of that room in a completely different place and have not looked back. My treatment consists of fortnightly trips to London to see Michael for half an hour and then Karolina, one of his team of physios for an hour. Between them they use a combination of internal and external manipulation and massage techniques that are working! Their knowledge and skills of the condition and problems that they are dealing with are outstanding and they combine this with a compassion and friendliness that mean that my whole attitude to living and dealing with my pain and discomfort has changed. I am no longer on any prescription drugs. I have some days when the discomfort is hardly noticeable; Michael loves to assess improvements in percentage terms and after Christmas I was able to report that I had had days when I felt 80% better. I do still have days that are not great at all - maybe 30-40% - but I have the confidence to know that with time and continued treatment from this team, that percentage will rise on a permanent basis. I do work hard on physiotherapy exercises that Karolina sets me to do between visits and know that I need to keep committed to these; I am also starting Pilates tomorrow to work harder on regaining strength and tone in my muscles.

I can't believe how ling it's taken me to write this post! I know I'm not completely cured yet but wanted to write to post now and then be able to update in a few months time. If like me, you have come across Michael's name and clinic in your search for support and treatment and can get to London, DO IT! You have absolutely nothing to lose and I can say with almost absolute certainty that you will be putting yourself in the hands of a team that will know how to help you and have the expert knowledge and skills to do that. I look forward to writing an update. Please feel free to ask questions.

[Fabstillhoping]

Hey, how have you been?

[dcf]

Hi! I'm doing OK - continuing with my fortnightly trips to London and working hard on all the physio exercises and lifestyle changes advised by Michael and Karolina in between visits. I still have good and not so good days but my outlook on the whole condition and my journey towards recovery has changed so much since starting my visits to the Sayer Clinic that I find the no so good days a lot easier to manage now and don't let them restrict me as they used to. On Sunday I did a strenuous 6 mile hike with my husband which included a lot of hills and if I felt discomfort whilst walking (and climbing) I looked upon it more as an essential part of my recovery journey because I know that that type of exertion and exercise is helping me rebuild and strengthen important muscles. Yes, I was in some discomfort afterwards but it didn't get me down like it used to and I had really enjoyed that walk and getting out on the Shropshire Hills!

[Fabstillhoping]

Thank you so much for your response.
I will see Dr Durtnall soon an I am in quite a dark place currently, so I hope
His team can help me get out of there and improve over time...

[mary jane]

That's amazing ! I dream of getting off my meds one day too ! I saw Karolia at Sayer last summer and they helped a lot, the only issue is I haven't been able to afford to see them in a while but will return !

[Mylo123]

Hi im new to this site.. i have been suffering for so many years. Unfortunatly i have one of the worst symptoms. Iv lost some sensation. From reading all the posts i see dr durntull has great reviews. But im wondering how much the treatment is.. i contacted sayers and the receptionist informed me for a consultation for 1 hour is 250.. do you have any idea of treatment cost.. thanks in advance for response