Health Organization for Pudendal Education

Hi, everyone!
I'm new to this site but, not new to PN. Pain start in 2003 after removal of infected mesh. That was my second surgery for cyctocele, rectocele. And since then, Imhad at least 5 more. First they diagnosed me with muscle spasams, had Botox injection. Found out on top of this that I had IC. Years of PT and trigger point injections. Tried interstim for 2 yrs. Finally, went to New Hampshire for Pundedal release. That was 3 yrs ago. I was told to give it 2 yrs and what ever relief I would feel would happen by then. Unfortunately, they found 3 sutures on the nerve and since they had been there for so long,the surgery didn't help. So, now I have a pain pump, wear a Duragesic patch and still need breakthrough pain meds.
Is there anything else out there that I haven't already tried? I'm glad I found this site, it's hard to explain everything I've gone through with people who don't understand. All I get is "well, you look good"! That doesn't help. Unfortunately, you can't see pain!
Cindy

Hi Cindy,
I'm sure there may be some things that may help that you may not have tried but it seems that you done such a lot already. So sorry that the decompression surgery was not successful, did it help you at all?
I can't advise you personally as you probably know a lot more than me having been through such a lot but I'm very glad you have found this site, welcome .
Helen

Thanks, Helene, for your response. No, I didn't have relief from the surgery.
Dr. Conway let me know ahead of time that there may not be, due to
The length of time. The nerve was too far damaged.
I see that you are from England, how is treatment over there?
Are you more advanced then here?
Hope you are doing well,
Cindy

You had the TIR procedure, then. It hasn't been shown to give great results and now nobody in the US is doing it. We had one person here, Wendy, have a PN re-do surgery after TIR not only didn't work but made her worse. It resolved her compression and she reports a lot of relief. That unfortunately is all I can think of in your situation. I'm sorry this has happened to you.

Where did Wendy get her re-do surgery at?

Cindlylost, welcome to the forum. I feel for you with the mesh. I have all kinds of problems from bladder sling mesh. My pudendal problems weren't from the mesh but the mesh gave me obturator nerve damage, quite bad on my right leg. I've had two surgeries to remove the majority of the mesh even though some of it is still in the adductors of the legs.

As Celeste pointed out you had the TIR approach. Dr. Conway is now offering the transgluteal approach because you have better access and visualization of the nerve and more nerve can be decompressed. It is my understanding (someone on the forum correct me if I'm wrong) Dr. Conway is offering both approaches and he decided to learned the TG approach because he wasn't happy with the outcomes he was getting. The Wendy that is mentioned had her original surgery with Dr. Conway, a TIR approach, and did not improve so she went to Dr. Hibner. Dr. Conway attended the surgery that Dr. Hibner performed on Wendy. Wendy has improved since her surgery with Dr. Hibner.

Not that you would want anymore surgery but you might want to look into the transgluteal approach. You certainly have the added issue that sutures damaged your nerve so trying to determine whether more surgery could potentially improve your outcome because maybe all the scar tissue was not removed during the TIR approach might be difficult for you and a doctor to determine. You might want to consider the MRI with Dr. Potter in NYC to see if there is scar tissue along the nerve in areas that didn't have surgery. The MRI with Dr. Potter will look at other nerves, muscles and tendons in the pelvis and might give you some ideas if you have other things going on.

One option is Dr. Marc Possover in Europe. He does very specialized surgery to place peripheral nerve stimulators on the sacral plexus and removes scar tissue on that area. If you email him he will respond back. This might be an option if you want to get rid of the pain pump. There is also someone in the states who does sacral stimulators but his name escapes me at this hour of the night.

http://possover.de/index.php?id=21&L=1

If you think you might have other nerves involved in your pain such as posterior femoral cutanous nerve or cluneal nerve the only Dr. that I can think that could do surgery on those nerves would be Dr. Dellon. Look up the thread about the free publication on his website. You will find it helpful and maybe give you insight whether you might have these nerves involved also. Dr. Dellon is extremely knowledgeable about the neuroanatomy of the pelvis. Unfortunately, he doesn't take insurance. Lottanerve had pudendal surgery with him and I believe is seeing him again for the possibility of more surgery on one of the other nerves on the back side. You might want to PM her.

Prayers are sent your way.

Cindyslost wrote:Thanks, Helene, for your response. No, I didn't have relief from the surgery.
Dr. Conway let me know ahead of time that there may not be, due to
The length of time. The nerve was too far damaged.
I see that you are from England, how is treatment over there?
Are you more advanced then here?
Hope you are doing well,
Cindy

In answer to your question about surgery or anything PN related we are the definitely playing catch up in the UK. I guess our access to European surgeons extends possibilities probably to the same size areas geographically as you guys may need to travel for specific treatment, but no one would travel here for treatment as they do to the States or other European countries. YET??? No! the way things are going that would not happen in my lifetime.
Some very good suggestions above Cindy, could you face more surgery?

Hi Cindy,
Welcome to HOPE! I'm so sorry for what happened to you.

Cindyslost wrote:Unfortunately, they found 3 sutures on the nerve and since they had been there for so long,the surgery didn't help.

Cindyslost wrote:Dr. Conway let me know ahead of time that there may not be, due to
The length of time. The nerve was too far damaged.

Unfortunately, I'm not sure another surgery would be very helpful. I echo NYT's suggestion about getting an MRI with Dr. Potter, if possible. What are your pain symptoms? Are you experiencing any numbness?
Warm regards,
Karyn

Thank-you, to all of you who took the time to respond to my question. I can already feel the concern and support that this site offers.
First of all, I don't know what a TIR is and I believe Dr. Conway did the trans gluteal approach, to relieve the PN.
I would love to get the MRI but, since I have the pain pump, I don't think I can. I'll have to ask my doctor when I go for my refill.
To Karyn- no numbness per se but, sharp, stabbing pain and pins and needles feeling.
I wish I had found out about the physician in Aix before I went to dr.Conway.
I was in Aix visiting my daughter(so beautiful), only to go to Dr.Conway a couple months
later. I would of ,gladly,stayed in Aix to have surgery and recover.
If I can help anyone, who may be just starting out on this horrible journey, please let me know.
I've been to several doctors, PT, surgeries, etc. What didn't work for me, may work for you.
Hope you all are having a good day,
Cindy

Dr. Conway was only doing the Trans-ischio-rectal-fossa (TIR) approach 3 years ago. He only started the TG less than 1 year ago. If you had the TG approach you would have about a 3 inch incision on you butt. The link below gives a basic description of each of the approaches used to decompress the pudendal nerve.

http://pudendalhope.org/node/23