Pudendal neuralgia help please - Pelvic Pain Suppo...

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Pudendal neuralgia help please

Hi, I have been diagnosed with bilateral pudendal neuralgia and I’m in agony every single day, I can’t sit at all and all I do is lay on my side! Walking and standing are becoming a real problem... I can’t hold my job down any longer. I need the best physio in the northwest of England ideally Liverpool/Wirral/Cheshire does anybody have any recommendations?

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Fiona Hart is brilliant and has helped my oelvic floor so much, she works for dr de Melli at wythenshawe hospital. Ask your go for a referal to him I had to travel to London from Cumbria to find a good private one but I’m sure someone out there might know of someone closer

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Thank you for your reply, It was dr de mello that diagnosed me. I was diagnosed with vulvodynia and wasn’t happy with my diagnosis by a gynaecologist that I found dr de mello by myself and this was his verdict, I sad because only days before seeing dr de mello I could sit, I was having horrendous side effects to nortriptyline and I haven’t sat since. Is there any way we could talk? I would love to have someone to talk to?

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Hi, I am also looking for a physio and have been told that I need a women’s woman’s specialist pelvic physio which I have struggled to find. Have you tried calling the woman’s hospital in Liverpool. That’s what I will be doing next week to see if they can help. Good luck.

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Good morning, thank you for your reply. I have actually got an appointment with a physio called Georgina she I was referred to her though mr Williams at clatterbridge pain management clinic, I saw her and she said that I was in a flare and it was too soon to touch me but this flare has been going on for 8 weeks! I swear I could sit, walk, stand 8 weeks ago! It’s all getting out of control! I see her for my first session on Thursday and I’m terrified as every time someone comes near me I get worse! I have a pudendal nerve block booked in with dr de mello at whythenshaw June 3rd and I’m terrified! I have my own business and it’s all slipping out of my hands, I’m struggling with my 3 year old and my husband is although supportive loosing the will to see me like this for much longer! All I want is my life back?? How can things get so out of control in just 8 weeks? I was driving, working, sitting, playing enjoying sex before I took that nortriptyline and not one medical professional can see that it’s that that’s done this to me, I was taking it for one month and during that month I spiralled out of control my body became so hyper sensitive I couldn’t wee, I was struggling to poo, I couldn’t eat and I had a nervous breakdown, since discontinuation my symptoms gradually got worse and worse and now as I say I am pretty much bedridden 😢 is there hope? Xxx

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I am in the US. I do not diagnose of course, but my PE got progressively worse all on it's own. My nerve was trapped and did not improve until I had surgery to untrap it. I suffered for years, six to be exact.

Is there a diagnosis?

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How long was your recovery after surgery my love? I’m So sorry to hear this, I hope this isn’t the case for me, do you feel pain free now? X

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It took 6 months to be able to work again. The pain eventually decreased in 2 month increments. 70% recovery was a massive help. I felt there was a reason to not give up. The rest of the pain I dealt with by urogenital therapy, chiropractic care and vaginal suppositories with CBD and THC. I can do anything I want now within reason. I kayak, hike, haul my travel trailer to camp and sit without pain. I do get up and down alot, but I did that before this problem. I am not a sitter.

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This is great news! Congratulations! 🥂

May I ask. Can you walk after the surgery? Can you sit? Climb stairs? I only asked these questions as if they offer surgery to me I’d like to know from somebody who has experienced the surgery what kind of recovery to expect Xx

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I can do all of those things. However, I am very mindful of not pushing myself too far. I was told that the amount of times I spent in pain with the nerve trapped could account for only 70% recovery. I can deal with that, as I used other therapies to get relief.

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I had my nerve untrapped by Dr. Micheal Hibner in Phoenix AZ. He is one of the only specialists in the USA that do that surgery properly. BE VERY CAREFUL WHO YOU HAVE THIS WITH!!!! The downtime for the surgery is 3 years. Anyone who says less is full of shit. INTENSE pain for 6 months. My pain before the surgery was a 9 out of 10 every day. Now its about a 4 out of 10. I am no longer on pain meds and have recovered bits of my life. You will never be without pain but the surgery does help. Nerve blocks do nothing. Botox does nothing. The only meds I ever felt that helped was Elavil and xanax helped a bit too. Dr. Hibner will offer you a compound vaginal suppository with Ketamine that helps. ONLY see doctors on pudendalhope.org that site is VERY helpful! In the meantime go buy PURPLE seat cushion from Bed Bath and Beyond (it helps relieve the pain) and buy some frequency tattoos and put them on inside of thighs close to the vagina, the best patches are JustaPatch.com

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I know of a private pelvic health physio her name is Kate if you would like her details? I have never met her but I spoke to her and she sounds great, it’s inky because of my nerve block I have not been to see her, I’m desperate for some relief x

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I likewise have been diagnosed - like many - with pudendal neuralgia and am currently being treated at a Pain Clinic with lidocaine patches (12 hrs) and ibuprofen gel. I'm a retired university academic, continuing writing articles and books, so I am seated for several hours during the day - though I also exercise. My core symptom is a chronic perineal burning sensation - has anyone here accessed a successful mode of treatment? Thanks for ideas.

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I wish I knew what to say. That’s how I was before the nortriptyline and now things have got to a point where I just can’t live without sitting and moving ..... please keep on at them for treatment and don’t stop until you get relief xxx

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For those of us who have been through it and fixed it try not to worry we don’t even believe in PN diagnosis anymore (I was diagnosed with it’s it many times so was my friend - link to some videos underneath) neither of us believe in it at all. Another friend who who created this course DCT to fix this has three PN surgeries where they cut deep into him and froze his nerve (3 times) none helped. We’re all now totally fine.

It’s just tight muscle tissue around the nerve in the hips. You need to strengthen and lengthen all the muscles in the chain freeing up the muscle tissue and the pain goes away. I had it for about 5 years constant pain everyday. I don’t have it at all any more neither does Jane (we both did the same things to fix ourselves)

Janes video -

Me 1 -

DCT - freedomfrompelvicpain.net/v...

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LIARS

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Pardon me?

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You dont ever become "totally fine" after PNE and the fact that you say this is a complete and total LIE. Not nice to lie to people who are seriously suffering intense pain.

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I’m sorry you are suffering I totally understand how horrible it is. All of us were diagnosed with PNE and all of us have healed with no more symptoms. I had it for 5 years, same with Jane, David for 14. Once you fix it you dont still get pain or symptoms any more.

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Morning Geecee1, I have bought the DCT course and I do think it’s great! However the flare up it has given me is so overwhelming I have had to cancel work and I’m useless around the house, I have a 3 year old and I can’t do anything for her! Are there exercises on the course then we can break ourselfs in gently? 45 minutes has left my whole body aching and sore and with a flare that isn’t manageable ..... this isn’t something I can manage for 6-12 months, we will loose our house if I don’t work! ...... I’m already unable to sit what so ever or drive, can you offer me any advice?

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Start slow go at your own pace this is a marathon not a sprint. You have to create healthy connective tissue all through your mid section and body. This is not a quick fix. It took me 2 years almost of constant daily work to fix it PN and pelvic issues and I think another 1-2 years to fix the rest of my body.

The first few month will be hard your body is not used to the input you will flair up we all do but it’s a good sign it’s a sign that the body is changing.

There’s no magic formula so each person has to work their own bodies out and take control of their own process. But the sensations you are having are totally normal we all have them.

DCT is a slow long process and it’s 100% in your own hands. So consistancy is the key. Start of gently and rest when you need to but keep doing it. After a few months you will slowly but surely improve getting stronger and stronger to the point you can fly through it with ease

You just have to weather the storm at the beginning

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Thank you Geecee, I’ll keep trying. The flares are unreal but I’ll take it more slowly... maybe I tried too much too soon and put my body into shock mode. I appreciate your reply, are you on the DCT Facebook group? X

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I was also going to post good things about dct. Try it. It’s working for me and I was very sceptical

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Can you tell me your thoughts on dct and how it’s working for you? Thank you

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its about making the muscles work better, get stronger and reduce the inherent tension in them which stretching does nothing for. I have only been trying it two weeks but I am seeing results. For me. Everyone's different.

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I have a Skype chat scheduled in 10 minutes with Chris I’m very excited 😊

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Are you in the DCT Facebook group? X

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Yep

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Hi I have watched the videos, can you do DCT with a bad back? Does it ever make the symptoms worse? I just can’t manage anymore pain. Are you all struggling to sit? I need to know there is hope for me xxx

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I been going through this for eight years! Twenty one specialists and five operation later. I’m going to try DCT. I’m from Leeds U.K. 64 years old bad back. Oh yes I’m going to do it.

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Yes pretty much everyone has bad backs bad hips bad legs ., necks, stomach lol

That’s really the point of DCT as it’s makes you realise how all these issues are all part and parcel of same thing. A systematic tightness around the body and you have to treat it all

So really you should be fixing your bad back as well doing the program as the pelvic floor is just reacting to all the muscles around it. So the aim is to fix everything

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Have you had any surgery with metal hardware?

We’re you a cyclist, dancer, line dancer OR do you think this is rwkayed to a fall OR a post op complication?

What does the pain feel like? Does it wake you every night to urinate ? Can you urinate pain free but when you go back to lie down does it feel like someone is probing your anus and rectum with a red hot burning poker?

Are you losing stool? Urine?

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Good morning, 8 weeks ago my symptoms were of vulvodynia, biting, aching, tingling etc.... after an horrid experience taking nortriptyline I experienced the most severe side effects which effected my entire nervous system, ever since then (I stopped taking the nortriptyline after one month when I realised it was that causing my worsening) .... now after 8 weeks discontinuation I noticed pain when I sit and now I can’t sit at all for the horrific pain, not even without a donut cushion, I’m bladder feels like it is becoming effected more recently.... my Bowles have slowed down, but the worst of it is the pain in my vulva, Sharp shooting pains, aching, throbbing, biting, pinching, it’s terrible and I struggle to stand for any length of time and impossible to sit even on a donut I have no way I can sit what so ever!

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Hi,

I have suffered with chronic pelvic pain and want to tell you something that can help with pain. Do be optimistic when trying it and do not underestimate the power of the mind. It is the practice of mindfulness, a specific book to be exact:

amazon.co.uk/Mindfulness-He...

Please try to use this book and follow what it says. It is very powerful. I hope it works for you x

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Hello, I live in the UK also and I posted my symptoms very similar to a couple of days ago. Gone from being a working active mum to not being able to sit at all for over 2 months now. How are you getting on with the dct - is it helping?

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