Health Organization for Pudendal Education

Hi, my name is Grace and I'm scheduled to have surgery this January in NH. If anyone has info to share regarding the surgery, recovery or long term results I'd love to hear them. My symptoms have decreased somewhat over the years but I still get burning from sitting, problems with groin, and painful sexual intercourse. I'm putting this all out here looking for your feedback. Hope to hear back.....

Grace

Hi Grace,
I had TG surgery left side 1.5 years ago. Initial recovery was 3 months before attempting to work and even that was part time but I am back closer to full time now. I still havePT, acupuncture and Psychologist appointments that I leave work early for and sometimes due to pain. I have a custom cushion to sit on at work and try to get up every 20-30 minutes, basically a sit down job and due to previous buniion pain standing is not an alternative. I am doingg better as before surgery I was going down hill and only working 4 five hour days and took weds off for a break. I can sit up to an hour on a cushion, also able to cook and some baking. Best of luck on your surgery and let us know if any specific questiions you have.
Janet

Thanks, Janet. I have been having these problems since 2008 when I was hit by a car, surgery is planned for both sides. I have had cortisone shots, total of 3, along with PT. It took over a year to be properly diagnosed. I have been on gabapentin, Cymbalta and Celebrex. Currently, I take Celebrex as needed. I have had rectal spasms which have woken me up. I also have vaginal suppositories that I use very rarely.

Since I discontinued Cymbalta, I am having increasing, burning and numbing. I also feel like I'm having mechanical problems with my right groin, buttocks and hip when walking. Inclines when walking cause pain.

Question is, can I get by on Cymbalta? I'm 61, fairly active, although I have given up yoga, biking, . I feel very uncertain about the surgery...and the length of recovery. Luckily I'm retired although I love to travel, I no longer have to sit all day for work.

Grace,
I am hoping others will reply to help you and me in responding correctly, the moderators or others know a bit more. Anyway the Cymbalta might be good to restart and help you through post op until recovery is at least partially over. The recovery is long as I still cannot lift and carry much towards 5 pounds. They say you can still have recovery some 2-5 years so hoping that settles along sometime. I would avoid anything that causes you pain, inclines are generally not a good thing. Being retired should make recovery better so long as you pace yourself. If you are asking about skipping surgery and just using Cymbalta? Not sure about that if your are entrapped on both sides it could get much worse and possibly better to have surgery now rather wait?? Surgery of course is risky and you may end up using or staying on cymbalta either way, I am gain hoping sometime to get off neurontin but not ready yet. Again hoping someone will chime in with advice since I am not sure how to guide you except relay my experience and some things noted ny others. Janet

GraceAnn,

Since you have having some hip pain you might want to read this thread about acetabular labral tears before you finalize on your surgery plans. It's rather long but very informative. http://www.pudendalhope.info/forum/view ... f=9&t=3487
Especially on the last few pages of the thread there are several articles that have been posted.

Violet

Hi Grace,

I had surgery with Dr. Conway. He's really such a sweet guy. He will follow you all the way through the aftercare process, if you live close to NH. I had the TIR with Dr. Conway and the TG done with Dr. Hibner. If you have any questions about my experience with Dr. Conway, what to expect after surgery, etc. I would be happy to tell you. There are so many others here as well, that have also had surgery with Dr. Conway and would be able to provide you with their experiences to.



Take care,
Wendy

Thanks, Wendy. As the date approaches for my surgery I am having more and more fears. Your email has certainly made me feel better. Why did you need the second surgery? I am having the unilateral decompression surgery. I do like Dr. Conway and trust his instincts, I'm just so concerned about the recovery period. I'm not on Cymbalta now, and all the burning, etc., are returning with a vengeance. When I had been on it, I was doing well except I developed a very uncomfortable itchy sensation on my inner buttocks....thought I had a skin condition but Dr. Conway said that could be the nerve sending out 'wrong' messages.

I am a very active person so the idea of being down and out so long scares me.....

Hi Grace,
Welcome to HOPE! I had bilateral TG surgery with Dr. Conway. I agree with Wendy - he truly is a sweet man and competent surgeon.

GraceAnn wrote:I am a very active person so the idea of being down and out so long scares me.....

Admittedly, the restrictions after surgery are tough. However, living with the pain I had before surgery, for the rest of my life was even scarier.

GraceAnn wrote:Since I discontinued Cymbalta, I am having increasing, burning and numbing.

Why did you discontinue the cymbalta? Were you suffering ill-effects from it?

GraceAnn wrote:Question is, can I get by on Cymbalta?

Unfortunately, you're the only one who can answer that question, hon. Tolerance levels are different for everyone.

GraceAnn wrote: I also feel like I'm having mechanical problems with my right groin, buttocks and hip when walking. Inclines when walking cause pain.

I noticed you had been to PT. Did you receive any feedback about the mechanical problems? Have you been diagnosed/treated for SIJD? I agree with Violet that having a hip study done may be beneficial to you.
I wish the very best for you, Grace. Please let me know if I can help in any way!
Kind regards,
Karyn

On Cymbalta, most of the outlying problems abated somewhat, however, I started having more problems in the local area. Karyn and Wendy: Itching, tingling, and painful intercourse which had never been relieved. Dr. Conway stated this past August that some speialists advise agsinst taking because it masks symptoms and may lead a person to be less careful. I have cushions throughout the house and car. The itchy buttocks became a nightmare. I have been in PT for a year, had three injections by Dr. Quesada, have Valium vaginal suppositories. All have helped to some degree. I use Celebrex as needed when I'm really flared up.

I have stopped going to the YMCA, stopped yoga, biking and limit kayaking. I managed to figure out a seat for my kayak made out of a life jacket. Standing, sleeping and walking are the only things that don't bother me although I have been awakened with anal spasms.

I am going forward with TG surgery and will follow up on hip once I've healed and rehabbed.

Wendy, how long before you could resume normal AdLs?

Thanks so much for your openness....

Grace