Health Organization for Pudendal Education

I am pretty sure surgery is it. 2-3 years in pt is enough! Plus injections, perineal branch dissection surgery (failed), massage, counseling ( my god, you cannot think this away!!!). Anyway, my problem is from a vaginal childbirth. Numb for a few months maybe, then came feeling back and pain. I haven't gotten any long term relief from nerve blocks. Who is the most experienced surgeon, especially when you don't know for sur where you are entrapped? I just have a constant throbbing, tight pelvic floor, especially left side, which is my painful side. I just cannot stand this one more day! It has been just about 4 years, and I have gotten nowhere. I am willing to go wherever I need to. I have little kids, no family to help so I need ( in a different way) to get better, and am willing to take more of a risk to get better. To me, I am not living now anyway, really, so surgery is not as scary as it once was. I hope someone understands this feeling. And now I need to know where to turn.

Thanks. Love to you all who read this far.

Kara

I am in the uk so cannot advise - i hope Janetm2 replies to you as she lives in Maryland and writes that she has had some good care.

Rosemary x

Kara, I just read your PM and need to collect info for you and maybe give you a call. Stay tuned. Rosemary - I will do what I can.
Janet

Thank you, Janet and Rosemary. Not rushing too too fast, but don't want to keep wasting time on therapies not effective. I agree with many others that surgery hasn't been the quick fix, or miracle cure, but once you are at the point I'm at you might entertain the thought.

Looking forward to talking to you Janet.

Thanks,
Kara

janetm2 wrote: Rosemary - I will do what I can.
Janet

Janet

Thank you - my apologises if i have put you on the spot - just thought you may have some good local advise.

Rosemary x

Kara,
Yes I know the feeling about ready for surgery! I went rather quickly myself, the tough part is knowing what to get surgery for and in the case of PNE it is hard to tell ahead of time, I really wish we had better data and more similar experiences but it seems we are all over the map.

Rosemary - no problem, I am trying my best to help the local folks. I want to do what I can but as noted above it is so hard to say except for your own experience. We are all in this together is what I feel given the lack of data.

Happier days to all. I wish everyone at least a little less pain.

Janet

Aleclucy , I have suffered with Levator Spasms for 21 years.(64 yr old male) Levator Spasms are spasms of the rectal muscles.This is very uncomfortable. I have taken a lot of medication,but no relief. I have also tried EGS, nitro cream, and biofeedback. Again, no relief. I went to see a PT but she didn't specialize in pelvic floor problems. I'm looking for a PT that specializes in pelvic floor problems.If the PT doesn't help me, I might have to go with the surgery.. I really hope the pelvic floor specialist can help me because I don't like the idea of going under the knife. I have heard that internal massage will bring relief. I will give it a try.

Joddy,
The last thing before surgery that I tried was botox for what I thought was the levitor ani spasms again. It did not fix the pain but may have helped slightly but I still had pain which I nnow know was the PNE. Not sure if you would want to try botox but be aware insurance did not have enough evidence in 2010 to approve this treatment for this problem (obviously it was not cosmetic!). I was lucky that my insurance did not charge me because it fell under the regular preferred provider costs that I guess the doctor annd hospital get special rates as preferred providers. I did pay the usual co pay and some administrative costs but not the doctor fee or $1000 for the shot medicine. The doctor that suggested this was the colon rectal. I am not sure if others have had sucess with this but I know others have had botox. I would certainly give PT a try first and I hope they can calm down the spasms, thoses spasms did impact my life quite a bit (I feel your pain).
Janet

janetm2 wrote:Joddy,
The last thing before surgery that I tried was botox for what I thought was the levitor ani spasms again. It did not fix the pain but may have helped slightly but I still had pain which I nnow know was the PNE. Not sure if you would want to try botox but be aware insurance did not have enough evidence in 2010 to approve this treatment for this problem (obviously it was not cosmetic!). I was lucky that my insurance did not charge me because it fell under the regular preferred provider costs that I guess the doctor annd hospital get special rates as preferred providers. I did pay the usual co pay and some administrative costs but not the doctor fee or $1000 for the shot medicine. The doctor that suggested this was the colon rectal. I am not sure if others have had sucess with this but I know others have had botox. I would certainly give PT a try first and I hope they can calm down the spasms, thoses spasms did impact my life quite a bit (I feel your pain).
Janet

Hello janetm2, Thanks for answering my post. I hope I can find a specialist that can give me some relief. You would think that a PT that specializes in this kind of problem would be easy to find in big cities like Dallas- Fort Worth, but so far nothing yet. I am going to call a few hospitals tomorrow and see what I can find. These spasms did have a big impact on my life. I lost my job, girl friend, and several friends. I give out but I never give up.

Take Care, Joddy

Joddy,
So sorry to hear all the losses you have had. I have been very lucky but this has many challenges for us and I am glad you are not giving up. I tried to focus on the treatments and got some good help. There are few resources but I am sure some that are notlisted here and just need to be found. Take Care
Janet