Health Organization for Pudendal Education

Hi,

I was injured by mesh (the transvaginal mesh commercials). I had damage to several area's and the urethra. I have been diagnosed with PN and obturator neuralgia. I did see Dr. Hibner who also diagnosed PN. All the doctors have said don't do PT until the nerve gets worked on. I live in avg. 7 pain, with opiods. I can't sit more than 1/2 hour without out of control pain. I have been told that my only hope was a spinal cord stimulator and have sent my records to Dr. Ken Peters and Dr. Hibner. I just saw another pain doctor, he said he has about 5 other patients like me and that basically I just have to live with pain for the rest of my life. He'll try to get it under some control. He said the SCS can make it some better or much worse. This is scary. I'm not sure what to do. If I stay still and lie in bed all the time my pain is 0. Can't live like that. Just walking to the bathroom sets it off. I also get electrical shocks from the rectum and the vagina. Of course I've got atrophy of some muscles (piriformis, gluts) from inactivity and am terribly bothered by muscle spasms. Clitoral pain, vaginal burning, labia pain, left inner thigh pain. Tailbone pain and rectal pain. I feel like thighs up and belly button down is just shot. I have to cath. It is very painful. Is there hope???

Laureen,

I think it is too soon to accept that you will have to live with severe pain the rest of your life.

You say you saw Dr. Hibner. What was his recommendation? I'm sure you are probably aware that he specializes in treatment of women who have had failed mesh surgeries.

Dr. Peters often does neuromodulation at the nerve itself rather than SCS so it would be interesting to see what his response is to you. I know he has helped some women who posted on the forum but others did not get good results.

You may want to read the neuromodulation section of the forum, especially Amanda's posts regarding her successful SCS neuromodulation using a retrograde approach (I think she also referred to it as tunneled). She saw Dr. van Buyten in Belgium. I think there are a couple of docs in the US who do this approach. You could check with the medtronics reps but I think of of them is Dr. Barolat in Denver.

You are smart to be doing a lot of research before making any final decisions on what to do.

Violet

Laureen, I too had mesh surgery. I had a transobturator tape sling and like you ended up with pudendal and obturator nerve damage from the sling. My sling was put in at the same time as a hysterectomy and I also have nerve damage from the trocar placements and positioning during the hysterectomy of other nerves in my pelvis. I've had my sling removed and it took two surgeries to remove the sling. The first physician removed only the right side of the sling because that was my worst side and then Dr. Hibner removed the left side of the mesh and obturator decompression surgery at the same time. Having the sling removed did help with the pain. After waiting about 1 year Dr. Hibner performed my right sided pudendal surgery then I waited about another year and Dr. Hibner did my left side pudendal surgery. Not cured but the surgeries did help.

Like Violet, what did Dr. Hibner have to say? He has a lot of experience treating women with complications from mesh surgeries. He should be able to give you a rough idea about what kind of success he would anticipate in your case. At least for me, I found Dr. Hibner very upfront with what he kind of improvement he thought I would have.

Please keep us posted and don't give up hope that you will live with the level of pain that you have now.

Hi Violet and nyt,

Thank you for your answers. I saw Dr. Hibner in 2012 and had an 8 hour surgery. He tried ketamine and botox. I have re-sent my records to him and to Dr. Peters. Dr. Hibner did confirm I do have pudendal neuralgia and said I do not have an entrapped nerve. I haven't received further recommendations. I have seen Dr. Raz several times since then and he recommended the pain pump, which I do NOT want. I saw my mother in law deal with that. And since then he recommended the interstim. I'm not so sure I want that at all. From what I have read of Dr. Peters, he is advanced from the interstim. I saw another doctor closer to where I live and he said he does not favor the interstim. So I guess I am willing to go see Dr. Hibner again and Dr. Peters. This gets so expensive. And discouraging. NYT, I also had a TOT tape. So much damage. I am about to start the Butrans patch. I guess I'll see how that works.

Since 2012 I've been through so many trigger point injections (so painful), botox injections - hit the roof painful. They have helped for a month or so, but I sometimes get rebound pain. So they are not right for me. Muscle relaxers etc. I've been told by several doctors that PT isn't right for me now, but in the future. Because of my experience with the last implant, I'm very nervous about another one. Is Dr. Hibner also doing SCS? I have also developed a neuroma, which is the worst. It's been "removed" 3 times and grows back. I'm coping, but feel like I'm going to go crazy.

I thank you for your time and input. Sincerely, Laureen

Laureen,

One thing I have found helpful is using valium vaginally or rectally. I use the whole tab and alternate whether vaginally or rectally. It is the only thing that has helped my rectal pain.

Have any of the doctors talked about the possibility that your pain is centralized? I receive both ketamine and lidocaine infusions. I know you said the ketamine didn't help at all. For me, the lidocaine helps my pelvic pain more than ketamine. Might be something to consider.

Another possibility might be to try a 5-day inpatient epidural. Dr. Hibner was doing those at one point in collaboration with anesthesia but don't know if he is still doing them.

Any idea why they think you still keep getting a neuroma. Anyone recommend cryoablation of the area that keep forming the neuroma?

Hi NYT,

Thank you for your reply. No one has mentioned cryoablation. I feel off in no-mans land. Just getting Dr.'s toc respond is hard. I am willing to try lidocaine infusion, if I can find someone to do them. My pelvic pain doctor thought the neurostimulator would be best at this point. I get compounded suppositories valium-lidocaine-flexeril, they do help a lot. I didn't know I could use valium pills directly. I am not sure of how to go about this next step. I have a lot of bowel issues, so that is one reason I'm looking into the neurostimulator - I've read several reports that it helps the bowel work better. Also, my clitoris hurts and sometimes gets stabbing sensations. But it is dead as far as any stimulus directly. My husband has stayed by my side this whole time, but we are both very stressed. Any recommendations are most welcome at this point. I feel like my body is detached from my brain. I cannot wear underwear because of the neuroma, which is awful, since occasionally my bladder just "dumps" it whole contents at once with no warning. But it goes both ways, when I'm in a lot of pain I have to cath. I'm sure TMI is gone for us here. Never thought I'd be talking like this. I'm looking for recommendations in who to go to also. It's hard to accept that this is the end of the line.

Thank you again, so appreciated!!

I had a neuromodulator placed in September 2015. It has helped relieve alot of pain. I have 12 programs on the stimulator and I can control the intensity. The programs stimulate different areas (clitoral, urethral, rectal). Your symptoms are more severe than mine, and we all respond in different ways. I think it's worth the trial.