Agonising pudendal pain

[K858]

Have been diagnosed with pudendal neuropathy with suspected piraformis . Am currently taking gabbapentin but have had the most horrendous flare up. Doc said take tramadol to calm things down but pain just getting worse. Has anyone been to Nantes for surgery ? Just want my life back

[PPSN_JudyB Pelvic Pain Support Netwo]

There are several people here who have been to Nantes. Have you done a keyword search to find them ?

If you don't hear let me know

[K858 in reply to PPSN_JudyB]

Thanks I will do. Am out with my husband at moment. We have travelled miles to see an osteopath who might be able to give me some temporary relief . Have been to Dr de Melli who said take gabapentin . Have increased my dose massively . He also said possibly have injections in the future. This was all a month ago and since his physio examined me the pain has flared.

[66crusader in reply to K858]

The key is to try not to panic.......as that will wind the nerves to even more, have you tried ice/heat/bath to give you a break. The pills like gabapentin take a while to start working they have to build up in your system. I am ten months in with this AWFUL condition and I am a lot better than I was, I have France on the back burner at the moment.

[K858]

Thanks for your reply. My condition started years ago with lower back ache and suspected sciatica . More recently it's developed into this. Just been to an osteopath who has done myo fascial release . Seeing doc tomorrow . Been on gabapemtin for about 5 years now . She has tried me on cymbalta and tramadol . Think she is switching me to pregabalin

[K858]

Am thinking about France too but very nervous . What are you doing for your symptoms ?

[Hidden]

nerve blocks? the surgery works for very few people

[alan1646 in reply to Hidden]

I had a lot of nerve blocks with Dr Baranowski, didn't help at all.

I would not have an operation in the UK because I have not heard of a single person who has had improvement from it here.

It could be that for some people there is no cure.

I would only have the operation in France as a last resort . I am very concerned about it making it worse, and causing instability by cutting ligaments.

[Hidden in reply to alan1646]

@Alan, neuropathy generally doesn't have a cure, however I would say it can get better with time, especially if you're young...I was in agonising pain last year and now I have a normal life thanks to the lyrica and amitriptiline, I am weaning of the lyrica ....

I also had severe nerve buzzing and that went away with a simple magnesium dosage (magnesium oxide) ...

I read a lot of other forums as well, including the ICNETWORK one, there was a lady there who had a great improvement in the PN pain after 5 years....

Also, if we are constantly under pressure from society to work, study and so on, how can we possibly get better ?? The central nervous system is under a lot of stress, how can it calm down and make the nerves stop firing if we're focused on making a living ??

Scientists are also making a lot of advances regarding neuropathy, I think in the future we will have better treatments for this !!!!!!!

[Sky58]

Visited an amazing osteopath yesterday who released points on my piriformis which has given some relief. Saw Gp today who said I need to learn to accept the pain and go on a pain management course. Also gave me some liquid morphine for flare ups

[Out-of-the-blue]

I have suffered with pudendal nerve entrapment for 10yrs now. I have had everything possible done and nothing has worked. I personally cannot cope with he y duty medication and have found that nothing alleviates nerve pain so I made a decision to stop taking them as I was fed up with being a zombie with no relief. The one thing I swear by is my basic Tens machine which I have on all day. It does not stop the pain but it does distract you from it. I only take Anadin or Co-codamol (on a bad day) and I take one Amitryptiline at night (which I sometimes think is probably making no difference) but I am lucky enough to be able to sleep

Some days the pain is unbearable - like having a sharp object stuck in my rectum and it is exacerbated by sitting, driving and walking !!! I have learnt to pace myself each day but again I am lucky enough that I no longer work having been ill health retired due to this condition.

I still hold out hope that someone will find a way of treating nerve pain successfully

The main thing to concentrate on is to accept this condition and NOT to beat yourself up about the things you CANT do and listen to your body. I used to feel guilty when people would say " oh come on make an effort, you'll feel better for it" when you know it will only cause you further pain.

It has become a way of life for me but I am more at peace with it now. I will never give up researching for ways to help my condition and praying that all us sufferers will get a solution in the end

I consider myself a cup half full person but this pain is hard to explain to people. If they haven't experienced it they shouldn't try to force you into anything you are not capable of.

Listen to your body

[Poppy26]

I couldn't agree more and like yourself have retired earl on grounds of I'll health due to PNE. I am a positive person but my life now is poles apart to my life before PNE. I wish everyone dealing with this lots of support and positive vibes for the journey we are facing

[sweetpea02]

Hi K858, I went to Nantes in January this year and had bilateral decompression. I also had awful piriformis syndrome which was due to irritation of the sciatic nerve from the pudendal nerve entrapment. Please read my posts so you get a picture of my journey. All I can say is that I'm so happy to have had the surgery, I'm much better than I was, have returned to work part time and have a new relationship since June, which I never would have believed was possible. Please don't give up hope, last year I was suicidal at times, now I have a future. Do what you want to do with regard to treatment, only you can decide, please don't be influenced by anyone else but trust your instinct. Good luck. Xx

[Jenniferleigh in reply to sweetpea02]

Hi sweatpea I am you got to go to France and you feel much better. I tried everything besides the surgery. I would have to go in the states. I want my life back. My son is only 5 and this happen suddenly with a hip surgery gone bad. I am 2 days from a pain appointmentioned for anursing that will stop me from feeling so upset. My whole butt and private parts, hip and groin are like they are pouring battery acid. I can't even lay with out this suicidal pain. My whole leg is affected. Please guide us as your a inspiration I can get my life back with my son. Thanks so much! Jen

[Sky58]

Thankyou so much for your reply. I am now on more strong drugs which I feel adversely affect my whole body . For years I was told I had sciatica. Relatively the pain has also affects my pudendal nerve and the consultant suggested I might have piriformis. I certainly have a lot of tightness in my left buttock which seems to affect both nerves. I have become increasingly less fit and at times writhing in pain. My GP says I just have to accept this chronic pain but I am not willing to just give up.