Health Organization for Pudendal Education

My name is Jane and I have belonged to this site for many years, although I have to admit to not posting for some time.
Basically I had a Sacro Spinus Fixation in 2004, came round to burning pain and even then knew something was wrong! Over the years I had a total hysterectomy, a nerve decompression both left and right, four nerve blocks which didn't seem to help with the ongoing chronic pain and finally a bladder repair.

I had a few years of nearly ordinary life as long as I was careful, interspersed with homeopathic remedies and Lyrica.

The PN pain then started to get progressively worse and I thought I was having a flare up from overdoing it. Eventually went to the Drs and asked to be re-referred to my Uro-Gynaecologist in London. I was pretty sure that I had another bladder prolapse and that this was causing the pain.

My Consultant told me straight that I did have another prolapse but she did not want to operate anymore due to the amount of scar tissue and the possibility of making the PN pain worse. She did however arrange two MRIs and the results were that I have a bowel prolapse as well as bladder. The neuro results showed scar tissue tethered to my sacro spinus ligament on the right and some obstruction at the very beginning of the PN on the left. I was told there was nothing they could do other than refer me back to the Pain Management Team. I asked what the prognosis was and was told they don't know.

Needless to say I was quite devastated and can't help but wonder what my old age will bring!

Has anyone experienced this type of situation? I am wondering whether to get a second opinion bearing in mind that I have two separate issues, if so where to go. All my operations and Consultants have been done in London.

Any help would be gratefully received.

Hi Jane,

Sorry that you have had to return with new issues going on. Are your new symptoms bilateral or just on one side?

From what some of the surgeons are saying, we don't know that MRI results always coincide with what surgeons are finding in surgery and whether what is found on the MRI is always the cause of the pain. So just because there is scar tissue tethered to the SS ligament there is no way to know whether that scar tissue just formed there recently and caused your pain to return or whether it's been there for awhile even during the years where your symptoms had lessened. I'm not sure what the obstruction on the left means or whether it's the type of thing that could even be released by PN release surgery.

I have prolapses also but they are not the cause of pain. My gyn told me she sees prolapses all the time that don't cause pain so if the prolapse is something you can live with, maybe your gyn is right about not having it repaired at this point and risking more scar tissue forming.

Have you had an opportunity to see a physiotherapist who specializes in PN yet? If not, maybe that would be a something to consider before traveling to another surgeon, especially since there aren't that many PN specialists in the UK. The only ones I know of are in London and Bristol. You can do a search on this forum to read what patients have reported about the Bristol team. You could keep the French doctors in mind as an option for a second opinion if you really wanted to consider another surgery but there aren't that many doctors who will do a redo PN surgery. Dr. Hibner in the US is one of the few I know of who will and that would be a major trip for a second opinion.

I don't know what options your pain management team is offering. Some people have done well with neuromodulation or pain pumps so those are other options to consider.

Wishing you all the best as you try to sort this out.

Violet

Thank you Violet for your post and advice.

I can see that the scar tissue on the SS could have been there a while, the initial SSF was dine in 2004! Leaving many years for scar tissue to build. The obstruction on the right was not explained further! I do have bilateral damage and pain. Continual burning around the labia and pain in the rectum.

Do yourprolapses give you discomfort and may I ask how long you have had them?

I am not sure what has happened to be honest to make the pain worse after a few years of fairly reasonable life.

I think I have decided to wait and see what Dr Baranowski/Miss Elneil (they run separate and joint clinics) suggest.
Dr B is very knowledgeable on PN I believe.

Jane

PS no I have not been referred to a physio

I have Howell Prolaspe too. Gyno said leave it alone. Colon dr wanted to pull it up and staple to muscles. Gyno said no way that would make me worse.

Jane wrote:
Do yourprolapses give you discomfort and may I ask how long you have had them?

I think I have decided to wait and see what Dr Baranowski/Miss Elneil (they run separate and joint clinics) suggest.

Yes, my prolapses have been uncomfortable and annoying but not painful. I first noticed the problem around age 30 after my second child was born and that was about 30 years ago. I read a study once that said when you get them that young it is likely due to a genetic collagen deficiency.

I think you are smart to wait to see what Dr. B says since he is very experienced in this area.

Violet

Thanks Jaxi for taking the time to post.

Some of my doctors strongly advised against having prolapse repair surgery also, saying it would make the pudendal neuralgia worse. So I guess we are stuck in between a rock and a hard place.

Violet

Do you have problems trying to relate to a partner or adult children that you are not up to everything you would like to be?
I feel shattered at the end of a day and still I am asked to look after grandchildren for many hours and my partner still thinks I can carry on as I always have done. I do try to live a "normal" life but when I have a pain flare up it really takes its toll and then I become resentful that they don't understand.

People who haven't experienced pudendal neuralgia have no clue what you are going through. You can't really blame them for that because they just don't know. Rather than being resentful, maybe it would help to just be straight forward and matter of fact with them, explaining that you love them and want to help but that you just can't do certain things, physically.

Also, it might help to give them the letter posted in the following thread:

http://www.pudendalhope.info/forum/view ... =25&t=4874

I hope you will be able to get back to where you can take care of the grandchildren so you don't have to miss all of those great memories and being able to help shape their lives. But for right now, the important thing is for you to get well.

Violet