Pudendal Neuralgia & Prolapse

Submitted by jazzwoman on August 13, 2015 - 1:42am
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I had a rectocele prolapse op 5 years ago which has left me with pudendal nerve neuralgia. A rare, badly supported in Uk (which is where i am) and i believe US, condition, which is painful beyond belief. I am on massive doses of Gabapentin (a nerve drug), which doesn't block the pain enough and my doctor doesn't have a clue. I have had to do all my own research on this life shattering condition to the point where i have found a private consultant who has suggested the prolapses i have left are putting pressure on the pudendal nerve, which runs through the perineum and up to the coccyx and has said that what i need is laparoscopy mesh surgery to pull up prolapses and at the same time decompression of pudendal nerve. I am terrified!!! I have read such terrible stories about mesh surgery, i'm wondering why they are still allowed. However, i am in such pain and nerve pain is just beyond words, i am desperate and don't know what to do!! The decompression surgery is very painful in itself and has a long recovery time with only 50% success. I'm sure these surgeons mean well but i am so scared of further mistakes and yet more surgery. Every time i go near our hospital they seem to damage me. I feel like my life is over. Am seeing the two consultants again today to discuss further. Christine do you know about Pudendal nerve neuralgia or entrapment.

Forum:

Surviving60

August 13, 2015 - 4:29am

Jazzwoman, I am so sorry to hear about your experience. I read through your post of 5 years ago, when you were considering the surgery and were advised by several members (including Louise, and Christine herself) to put off the decision. You had other issues going in, which at the time were diagnosed as transverse myelitis, or possible MS (never confirmed). So I think it would be hard to say how much of your nerve damage was directly from the surgery itself. Clearly the surgery made everything worse, nerve damage and prolapse too.

This isn't a medical forum and I don't know what to suggest, other than booking a consult with Christine. I am sorry that the other voices recommending surgery, spoke more loudly to you than the voices you heard here, telling you not to jump into it. We can never know the future, we simply make the best decisions we can, based upon the information we are given to weigh. - Surviving

everhopeful

August 13, 2015 - 9:21am

I just wanted to send you sympathy and hugs and welcome you to this amazing site. I too am in the UK and think it is very difficult to broach this subject with anyone,medical or not. I guess u have looked at sites for coping with chronic pain? Have u tried the Wholewoman posture or is it too painful? Everything Christine explains makes so much sense and works for me ,I so hope she can help you too. If I were u I would speak with Christine before agreeing to any other possible solutions . Have u looked at the Tumeric group web site it is very interesting re reducing pain?

Aging gracefully

August 13, 2015 - 9:28am

I have heard of turmeric having many health benefits, but didn't know that there was an actual website for it. I actually try to get turmeric into our diet as much as possible, as well as the many other helpful herbs. I had read some time ago about the healing affects of the simple herbs that you grow in your garden or have in your pantry. But, i didn't realize that turmeric was used for pain reduction.
Thanks for bringing that up, everhopeful.

everhopeful

August 13, 2015 - 11:26am

http://www.turmericlife.com.au........this could be helpful re turmeric,there is a lot to read here. There is also a very good Facebook page too.

everhopeful

August 13, 2015 - 11:31am

http://www.turmericlife.com.au

jazzwoman

August 14, 2015 - 12:17am

Thank you so much for your kind and and supportive comments. The two surgeons I saw today restored my faith. They were both very empathic (phew) and both said they think I'm having an MS flare up. Because of the way the pain is presenting itself they are now not sure it's the pudendal nerve. I am being referred to neurologist. Neither are willing to operate any more. More drugs to add into the mix for pain and then steroid. So it seems I've been suffering little MS attacks for 5 years, since the last op and no one put 2 and 2 together. Not even me. I feel there's hope and can fight for my body now. Thank you so much again. What a wonderful site. X

jazzwoman

August 14, 2015 - 12:38am

Many thanks for this web site. It's really useful to know.

jazzwoman

August 14, 2015 - 12:56am

I just wanted to add... 5 years ago i went to see a neurologist before I had the rectocele op to see whether it would be safe for me to go ahead. I was in such pain with the prolapse pulling on sensitive nerves and maybe damaging them. He said i would be fine and to go ahead. I realise from reading my notes from 5 years ago, i was in fact having a Myelitis attack then. I know now and lesson learned.... My nervous system doesn't work properly and winds itself up very easily. From now on I will listen more carefully and definitely no more ops.
I do use the whole woman posture when I can. Just wanted to add some positivity today.... There is some light.. X

Kittu's Collie

August 19, 2015 - 7:04am

In India we use turmeric to spice up everything from lentils to vegetables.Its antibacterial and antibiotic properties are used to treat a range of ailments which include cough,cuts, arthritis,sprains and indigestion to name a few. Women in Southern India smear it on their faces and feet on Fridays while taking a bath. Brides apply it allover their body in a ceremony a day before the wedding. The use of turmeric in packs results in a softer , firmer, more radiant skin. I would have to devote pages to describing the use of turmeric . Its use has religious and sociocultural dimensions as well

Aging gracefully

August 19, 2015 - 8:58am

Thank you so much Kittu for giving us more information and the cultural aspects of turmeric. So very interesting!!