Health Organization for Pudendal Education

Hi there Ladies,

I am so desperately wanting some input. Are there other women my age (61) who have this condition. It started more than a year ago from out of of the blue. At first, I thought I had horrible hemeroids but that was not the case. I have been passed from one doctor to another. I have been diagnosed with PN after diagnostic tests. I am so very frightened of surgery.
My husband is taken a job over seas and he will leave January 2014 and I so want to go with him, however; the job is in a rather remote location with poor health care. If I have the surgery I will be recovering for long period of time with no hope of being with my husband.

I am inspired by the courage and strength that exudes from the postings of you ladies. Bravo! I hope to be apart of each of your courageous journey.

Mary

Hi Mary,

There is another lady on here who posts by the name of Torbjorn. She sees Dr. Popeney too and has been referred to Dr. Ansell. She used to live in Australia but has gone to live in Texas. She is also looking for someone to talk to about this. Surgery is a very last resort and is no picnic. Most doctors who treat this condition wouldn't recommend surgery until you've exhausted every other avenue. For me, the pain after surgery wasn't much worse than it was prior to surgery but that all depends on your own pain scale. I was 52 when I had surgery. Pain for me was off the scale of 10/10 and I had no quality of life whatsoever. It did take me a very long time to improve. Years in fact. It's now been 6 years since I had surgery and have improved greatly. Not 100% cured though. Still have the odd relapse where pain can flare up. I've recently been recommended an anti spasm medication called Norflex. Today is my second day of taking it and I'm going to have another shot of Botox to Obturator muscle. Pain flared recently due to me pushing a wheelbarrow with a few fire logs in it. That's all it takes for the pelvic floor muscles to spasm again.

What have you tried so far and what meds. do you take?

Catherine

Hi Mary,

I am also in my early 60's and am getting ready to have surgery. It is very scary and I second guess myself everyday if I am doing the right thing, but I know I don't want to spend the rest of my life in this much pain and not being able to sit.

If you read my signature, you will see this was caused from mesh that a doctor put in without my knowledge. :( I had it removed by a wonderful surgeon at UCLA ( I live in KY). At any rate, all this caused a lot of scar tissue and entrapped the pudendal nerve in two locations. I thought going to LA to remove this horrible stuff was far......now I am traveling to Austria to have this next surgery. I need the anterior approach and Dr. Aszmann is doing the surgery. I feel confident in his skills, but another surgery is VERY scary.

I have researched and read everything I could get my hands on regarding PN and PNE. I did the same thing when I was researching mesh after my first surgery. My husband says I could be a doctor. I know now that we truly are our own best advocates and the more you know, the more you can talk to doctors and ask the right questions. Unfortunately, with PN and PNE, there are very few doctors who know about this condition.

You are fortunate to know what your diagnosis is as some go for years without knowing and being misdiagnosed. Are you on medication? That has helped a lot for me, but I still cannot sit for any amount of time.

There are a lot of experienced voices on the forum and lots of people wanting to help. It is a lonely condition so having someone to talk to is invaluable.

Hang in there :)

Mary, I was in worse pain for about a month after surgery. Before surgery it was extremely difficult just to cook a meal. My surgery was Oct. 6 and by Thanksgiving I was able to help out a lot with cooking Thanksgiving dinner. So yes, the recovery period is long but if I had not had surgery I would still be in a lot of pain. It sounds like you have done enough research to know that occasionally someone gets worse from surgery and that not everyone improves but if you look at the published statistics, a majority of people have at least 50% improvement. If you are not in good health overall, then of course you would have other things to consider as well but I think your physician would advise you if they felt you were not a good surgery risk.

Best wishes with your decision.

Violet

Well it seems I am the oldest of you all. I am a young
76. This affliction (my grandma used to talk about her afflictions)of mine started 5 .5 years ago. Took almost 5 years to find out that it started with a fall on my back. The fibrosis took that long to compress 4 nerves against my pelvic floor.
We have spent way too much money running around the country looking for a dx. You all know what that is,the story gets old. I am beginning to see some improvement with pudendal nerve. I am still on pain meds,I am hoping for the day for that to end. There are times I am able to sit for longer periods,and some days it is the same pain as before.before surgery. I do not understand that.
I have had 3 decompression surgeries. One in Jan.2011 by Dr. Antalok. Two with Dr. Israel Chambi ,Santa Ana CA. Nerves heal I mm a month,which is 1 324 mm of an inch. Karyn correct me on that if I am wrong.
At this point ,my most pain is with the inflamed sciatic nerve. I had another injection about 3 weeks ago. Results not helpful. Thinking of a pain pump or nuerostimulator.I will be seeing a neurologist on the 6th of Aug. The saga continues.
I wish thee was a way all of us could get together,we are the only people that truly understand one another. Just to give hugs ,share ,touch one another. But then we are very blessed to have this hope site.

My dear Ellie,
You are such a sweetheart! I'm glad you've found the support you need here on HOPE. This truly is a fantastic community!
I wish you the best with your upcoming neurology appointment. What's your purpose for the visit? EMG?
With love and hugs,
Karyn

Karyn he comes to the clinic here in Melrose once a month. He will spend an hour with me going over things. I am sure he will do a EMG. I will
travel just a half hour for that. I will bring up the possibilities of drop foot and nuerostimulator?
My left leg has been weak for the past 5 or 6 years because of the damage from the fall.
When is your next appointment? Has any one diagnosed drop feet for sure as yet? Hugs, love Ellie.

Catherinea

Did cutting SSL lead to your pelvis instability?


Hopeman

Hi everybody

I had left side TG surgery seven months ago. Now I have right side preneum pain. I have asked Dr. Hibner for blocks, but I did not get his response. I have read Antolak paper, which suggests that 3 times blocks during one month will cure pudendal nerve pain for 65% to 70% people. However, I have read Robert paper which suggest that block can be used as diagnosis test, in his mind, no any pn patient can be cured from a series of blocks. The above two surgeons tend to have different views for blocks. To have surgery again is a hard decision for me now. If blocks can cure me, I would like fly from Asia to US. Can anyone, who have a series of blocks, tell me which view【Antolak or Robert】is correct. I also see some people had permanent pain after a series of blocks. Can anyone tell me your experience associated with a series of blocks?

Hopeman

In my 10 years dealing with PN off and on I believe that I have heard of one person who said he was cured of pain by nerve blocks. Therefore, it is my opinion that it is highly improbable that a series of blocks will resolve your pain. Antolak was simply incorrect when he wrote that or he had insufficient information. You can read the "nerve blocks" section of this forum or search those terms and see what experiences other members have had with blocks. You are quite early out of surgery. Is your pain better on the left than before surgery? Maybe your right side will settle down as you heal.

Stephanies