Health Organization for Pudendal Education

xxxxxxxxxxxxxxxxxxx can no longer post messages.

Welcome, Vicki. I'm sorry you have been through so much -- you sound like an amazing person and a real fighter.

You can read Callluna's posts as she is the expert on mesh around here. Unfortunately, we've had other women post who had mesh nightmares also.

Last I heard, Dr. Hibner is not always using cadaver tissue but is cutting the sacrotuberous ligament differently than he used to. I don't know the answer to all of your other questions but hopefully someone will.

Best,

Violet M

xxxxxxxxxxxxxxxxxxxxxx

Yes, Vickie, it's a shame that women aren't warned more thoroughly of the risks involved. Good luck with your Hibner appointment and please let us know how things go for you.

Violet

Vicki, I also had mesh but was for a TOT bladder sling and I have obturator nerve damage from the mesh. My PNE nerve damage is probably from the hysterectomy and not the mesh. I've had two surgeries to remove most of the mesh but some of it is still in the adductors of my legs. The first surgery only removed the right side of the sling was done about 7 months after it was put in and I woke up from that surgey totally numb across my butt. Then about 1.5 years ago Dr. Hibner removed the left side and did obturator decompression surgery. The mesh has been a total nightmare and I totally understand how you feel.

When I had my pudendal surgery in May with Dr. Hibner he was just starting to change how he cuts the ST ligament. At that time it was a case-by-case determination whether he could suture your own ST ligament back together or whether he would use cadavar tissue. I read somewhere on this post that there has been rare cases of cadavar tissue rejection. He has to severe the ST ligament because of his surgical approach. Individuals on this forum are divided on the use of the neurowrap that Dr. Hibner uses. You can look through the forum to see both sides of the argument to make your own judgement.

Dr. Hibner and Dr. Sparlin are working very closely together to administer Ketamine after surgery on the floor. All the nurses have under gone training, new infusions pump purchased and hospital administration approval. If all goes well they were to start sending Dr. Hibner's patients to the floor with Ketamine starting this week. But, having said that, hospital time lines are usually delayed so don't be surprised if its Feb before it actually happens.

Hi Vicki, I am another one with PN due to gynae surgery using mesh.

I'm now much improved after surgery (here in the UK) in Sept 2011 when a lot of the mesh was removed laparascopically, the surgeon also did a laparascopic ventral mesh rectopexy to stop everything falling out again. I do still have some functional problems but it is still early days really. I have some problems with mesh extrusion, this keeps happening, unfortunately. I've had a couple of minor infections so far but that's all, and they have been easily dealt with by antibiotics. So I've been very lucky really.

Despite the fact that I had PN from the mesh surgery I have never regretted having the surgery and I would most definitely not wish to go back to how I was before, basically nothing south of the navel was working and it was all trying to fall out, in fact a lot of it was succeeding. After the mesh surgery everything was back in place and worked again, which was wonderful, despite the pain.

In my case, I did go into the surgery knowing the risks - I was specifically warned about the possibility of nerve damage and of increased pain.

I do hope that Dr Hibner can help you.

Thanks to all the ladies for responding to my questions.

Hi There,

I do not know if you still have prolapse problems, but I had 2 successful prolapse repairs that are not related to my havin PN now. They used faschia from my leg for the repair. Dr Geoffery Cundiff( now in Canada) did my 2nd repair . It has held up really well since the mid 90's.

My Pn is due to an unreleated surgery that was due to a misdiagnosis and is a holy mess. I have heard there are successful law suits re mesh....which will not fix your pain.

Love,Light, & all Many Blessings,
Roxy

I have an appointment in May to hopefully find out why I have pudendal nerve pain, right SI pain, right bladder pain. I had a mesh bladder sling in 2006 (monarc) by American Medical Systems. I started having pain in my right lower buttock and SI joint a year later. It progressed to intermittent periods of debilitating bladder pain and vaginal/rectal pain. I went back to my surgeon who said I had interstitial cystitis. I took the IC meds and the pain has persisted and worsened. I get intermittent fevers and chills that come and go. I went back to my surgeon again and specifically asking yet again if this could be the sling. He said no, and sent me to get my spine injected with steroids. I have a normal MRI of the lumbar sacral spine. I have sclerotic areas in my SI joint. I wonder if it is infection that has spread from the sling. I have gone through many rounds of physical therapy for my SI joint. I am now seeing a physical therapist that specializes in pelvic floor disorders. She is helping my pain but I can still feel a pinching, pulling in my right buttock and vaginal area as well as constant right low back pain. I have to drive two hours to see her as the doctors in our area would much rather throw mesh in women than rehab their pelvic floor so they are not needed here. Anyway I feel for you ladies above. I just want answers. I am going to see a urogynecologist. I will post when I find out more. Anybody reading this...SAY NO TO MESH!!!!!

Wow, I'm sorry Malissa -- it sounds like this has been a nightmare for you. Good luck with your urogyn appt. I hope they can figure out what's going on with you.

Best,

Violet M