Pudendal nerve entrapment

[hoopwhirl2007]

Hi, has anyone been to see Specialist pelvic expert Madalina Grigore at Sayer Clinic: Kensington? I am so desperate to rid myself of this awful pudendal nerve pain (7 years now). It will be costly going to this clinic but if they can help me get rid of this pain, then it will be money well spent. Unfortunately noone seems to know anything about this problem and all the NHS seem to do is offer me meds! Your help would be great ... Even if you know of another specialist in the UK, that would be brilliant. Many thanks xxx

[RobertVerde]

This website has tons of information about pudendal issues: pudendalhope.info/ - good luck!

[hoopwhirl2007 in reply to RobertVerde]

Thank you so much xx

[UK_man]

I’ve been to that clinic, the lady I saw was very good but I don’t think Madalina was working there then as I don’t recognise her name. I would recommend them. Have you been diagnosed with PN or just thinking you have it? Either way they specialise in pelvic pain, as you say the NHS just seem to offer pain medication without treating the cause. Good luck.

[hoopwhirl2007 in reply to UK_man]

Hi, I was diagnosed with PNE by Dr Gareth Greenslade in Bristol in 2017. I have had every test under the sun and nothing is helping me. I have no alternative now but to try someone else privately. I didn't have much faith in Greenslade and that trip to see him was a waste if time and money. I don't mind spending the money if I knew someone could help but I have to make sure I'm seeing the right person . Unfortunately travelling to London is a big deal from the midlands and also requiring time off work is a no no especially if I am required to attend for regular appointments. It's so frustrating! Xx

[UK_man in reply to hoopwhirl2007]

Yes the distance isn’t great. I had some pain in genital area that I assumed was PN from Dr Google but think mine was more a mix of stress, posture and maybe some pelvic weakness. So I don’t know about PNE too much and my symptoms did ease but I had maybe 12 -15 sessions over several months so I doubt it would be something you would get sorted in one visit. Maybe explain the distance issue and ask if you can have a video chat or phone call appointment with that lady first to see what they suggest rather than travelling all that way.

[hoopwhirl2007 in reply to UK_man]

Yes that is a good idea and thank you. Me and my partner are continuing to trawl the net looking for specialists. I have just found a pain clinic in Bristol (not the place I saw Dr Greenslade,,) and the Dr there seems to offer a lot for all pain relief including PN. May check that one out. Still lots of research to do but I am now forgetting the NHS and have decided to use my savings in getting myself healed ,(hopefully,). Xx

[UK_man in reply to hoopwhirl2007]

Good luck. Yes unfortunately the NHS just seem to offer pain relief, I went to several urology appointments and they weren’t great and just seemed to dismiss things and tell me to come back in 6 months if I was not better. So I went round in circles for ages. Paying private might be the way forward, at least you are seeing people who specialise in these issues.

[hoopwhirl2007 in reply to UK_man]

Are you free of pain now since going to London?

[UK_man in reply to hoopwhirl2007]

It’s been good for a while but I didn’t have PNE. Stress was a major factor I think as bizarre as that sounds but I guess stress can have big effects on the body.

[hoopwhirl2007 in reply to UK_man]

I totally agree that stress can be the cause of so many illnesses/diseases but the problem is, if you mention the "S" word to an NHS medic, then that is an easy way out for them and gives them the opportunity to shut down there and then and blame stress as being the problem. Good luck though and thank you for your response to my posts xxx

[Midori83]

Hi! I was thinking of going to see Madalina, too.

I have been taking medication for 5 months, and I keep doing my NHS physio. Although the physiotherapist is OK, she is not very hands on and only focuses on the pelvic floor instead of the whole body (which is something we need, for pudendal neuralgia). Madalina is too expensive for me at the moment, so I am going to see an osteopath that is specialised in women's health, instead.

[hoopwhirl2007 in reply to Midori83]

I know, that clinic is so expensive and the problem is 1 visit is just the start! Can you imagine if they need to see you every week or even once a month? I can't afford either. I am searching the net looking for different clinics and different treatments. Please can you let me know how you get on with the osteopath? Good luck and keep smiling (so difficult I know when in pain). Xx

[Midori83 in reply to hoopwhirl2007]

Exactly. I think they charge double only because they are based in South Kensington, where rich people live. There are many qualified physiotherapists and osteopaths in London, who can treat our problems. If the one I am going to see is good, I will let you know. She is based in Ealing, west London. Good luck with your treatment! I am sure we will feel much better soon!

[hoopwhirl2007 in reply to Midori83]

Yes please, I would be so interested to hear about your experience. Good luck! Xx

[Midori83 in reply to hoopwhirl2007]

Hi, I have been to the osteopath. After a 30 minute assessment, she said we need to work on my pudendal, obturator and femoral nerves. She started yesterday, and I can already feel some improvement. I will see the osteopath again next week, then on 29th I will go an see a pelvic floor physiotherapist for the internal massage. How are you getting on? 🙂

[hoopwhirl2007 in reply to Midori83]

That's fantastic news. My osteo had just been concentrating on my bursitis in my hips. Been twice and bursitis pain so much better. She has given me exercises for the bursitis but my anal pain is worse now! I am seeing her again next week and will tell her what you are doing for the pudendal nerve. I have asked my GP for another referral to the pain clinic and may consider another nerve block. Also have requested women's health physio. Please keep me posted and it would be fantastic if this sorts out your pain. Thanks for the update! Good luck! Xx

[Vanillablacktea in reply to Midori83]

Hi. May I ask who you are seeing please?

[Midori83 in reply to Vanillablacktea]

Hi! I am based in London and I will have the nerve blocks at St. George's Hospital (pain management clinic). I had the pelvic floor botox done by the urogynaecology team at St. Mary's Hospital.

[Vanillablacktea in reply to Midori83]

Hi. I am based in London as well! Who is that lovely osteopath you saw who worked on your nerves?

[Midori83 in reply to Vanillablacktea]

Nicoletta Gelli in Ealing 😀

[Baileydog in reply to hoopwhirl2007]

hi, I visited sayers clinic looking for treatment in desperation. It is a long time process. I travelled from Cumbria every two weeks on the train to see Michael duet all and his physio Sophia. I had good relief but it never lasted . You have to be commuted to going there . Time and money . I really do hope you find your relief

[hoopwhirl2007 in reply to Baileydog]

HiThat's what worried me regarding constant journeys back and forth and all of that money!! I wouldn't mind if I knew the pain would at least subside for a few months but I couldn't afford their costs. I am hoping the osteopath appointment I've made for this Saturday will be the start of done pain relief. It is fast more affordable too ....£65 for 1 hour session. Xx

[hoopwhirl2007 in reply to Midori83]

Hi, since reading your reply to my post and telling me that you were thinking about seeing an osteopath, i have found one near to where i live and have made an appointment for saturday morning, Much more affordable than the London Clinic. xx

[Midori83 in reply to hoopwhirl2007]

That's great! Just make sure the osteopath is qualified in Women's Health. Let me know how you get on. xx

[hoopwhirl2007 in reply to Midori83]

Yes I will. Also please let me know how you get on. Xxx

[RobertVerde]

Forgot one thing - great book: "a headache in the pelvis"

[hoopwhirl2007 in reply to RobertVerde]

Thanks for the tip Robert. I will check it out. I am so fed up ...7 years and still in pain. It's affected my life so much. I wish I could find someone who could sort this out for me. Thank you for your involvement xx

[RobertVerde in reply to hoopwhirl2007]

It took me about 5 years to find a program that allowed me to control the PN issues - hard to explain to someone how debilitating it really is. My wife finally got it. I have a pretty rigid program I do every day - stretches and exercises - I take 600 MG of alpha lipoic acid twice a day as well as 150 mg of Pregabalin in the evenings. I was taking the Pregabalin in both the AM & PM but have been able to cut it down. All during this time I have been going to a PT that specializes in this issue. I was going twice a week for about 2 months. then once a week, then once every two weeks until I got it down to once a month for tune ups. She also taught me how to self treat which works! There is a light at the end of the tunnel - you just have to get close to it!

[hoopwhirl2007 in reply to RobertVerde]

I am awaiting an appointment with an osteopath hoping that she can help. I have tried the stretching exercises solely for pn and since doing them on a daily basis for last 2 weeks, I am now in the most awful pain. Perhaps stretching is not for me? X

[Konagirl60]

I can’t help you with British specialists.

I had severe PNE and my decompression surgery performed by Dr. Stanley Antolak really helped me. I’m Canadian and I had the surgery in St. Paul’s, Minnesota. Unfortunately, Dr. Antolak has retired.

Have you tried contacting Dr. Eric Bautrant in Nantes, France OR Dr. Marc Passover in Geneva, Switzerland?

[hoopwhirl2007 in reply to Konagirl60]

Thanks for your reply and suggestions unfortunately Switzerland and Nantes are it of the question and so expensive. Also eedi g time off work would be an issue. I need somewhere nearer to home in UK. So happy for you though that your surgery was successful. Xx

[Konagirl60 in reply to hoopwhirl2007]

Thank you.

I wish you the best luck finding a doctor who will help you.

[endoTHENmesh]

accupuncture cured my brother's p nerve pain after all kind of traditional medical interventions failed;

i discovered my p nerve pain was significantly reduced (75 percent) w myofascial release and stretching of the area... the area was botoxed first, which paralyzes the muscles and numbs the nerve temporarily. That allowed the myofascial release work wo intolerable pain... the botox lasted 6 weeks the first time and eight werks the sevond time. I used those periods without pain to get the tisdue in the area "pulled apart" and "untrapped". A possibility 🤷‍♀️

[hoopwhirl2007 in reply to endoTHENmesh]

That sounds fascinating. I will save your good experience and put it with my list of possibilities to try. Thank you for spending the time to share this with me. Xx

[hoopwhirl2007]

Hi fellow suffered of Pudendal Nerve pain. Yesterday i changed the opening to one of my many cushions and although it looks a bit tatty, it really does help with relieving the pain when sitting. i did fancy trying the Twin Cheeks Cushion but you cannot get that in the UK plus it is really expensive for what it is. That is why i tried to create my own version. This one i can open or close up the gap to whatever size is most comfortable. I wanted to share this with you all because so far this is my favourite cushion. xx

Pudendal Nerve Cushion