Health Organization for Pudendal Education

I am looking for direction. I am a 44 year old female and have been dealing with what started out as groin and sitting pain mostly left sided and has escalated for the last year. I was first diagnosed with a left labral hip tear and impingement with with MRI in 12/2016. I was told to have surgery by two surgeons but one was skeptical that all of my pain was from my hip. At this sane time so had and inguinal hernia repair on left side with mesh and plug and this surgery put me down for 3 months unable to work. It made my symptoms 10 x worse. One of the orthopedic docs recomended pelvic floor therapy and hip and back physical therapy. I wasn't getting much better from traditional therapy and chiropractic but have had some improvement with pelvic floor therapy and vaginal trigger point injections and dry needling. I still stand for work and only work 4 half days a week due to my pain. I saw a gynecologist who is in Illinois who is listed as a doctor in this group. She did a pelvic exam and has prescribed gabapentin which I couldn't tolerate and muscle relaxants vaginal and tablets. I don't care for either of these either. She wants me to be on a nerve med before doing a pudendal nerve block due to a flare possibly. Also I have been to a pain management doc who had and MRI of my lumbar spine and L-3 L4 and L4L5 are herniated and impinging on a nerve root. She gave me an epidural last week to see if this would help. It seems to have flared up my back as well as my pelvic floor muscles tightening even more. So Not sure what my next move should be. I live in the U.S. in the State of Wisconsin and need help finding a doc that can at least give me a diagnosis. So far I have self diagnosed myself and my pelvic floor specialist which is on this site list also feels there is pudendal nerve involvement but doesn't feel it is entrapped. I really would give anything for a diagnosis or a doctor to turn to next to rule out other possible causes. I am on the fence about doing the hip surgery but if it would help I would totally do it. Just want my life back. Can't do much for too long. Thanks in advance. Pam

Hi Pam,

Some women have a very bad time with mesh. It sounds like having that mesh surgery made you much worse. I don't know if there would be any merit in having it removed but it is something to ask your doctors about. If you are able to travel to Dr. Hibner, he is a mesh removal expert, although I don't know if he would remove mesh from an inguinal hernia repair. Is it Dr. Atashroo who you are seeing in Illinois? She trained under Dr. Hibner so maybe she can tell you more about mesh.

Often with chronic pelvic pain there is more than one thing going on so it's hard to come up with an exact diagnosis. Sometimes it is a matter of trying different things to see what works. Some women have gone for the hip surgery before focusing on pudendal nerve entrapment because they feel like it is a less risky surgery, and some have had good results. I don't know for sure if that's the best strategy, although I like the idea of trying the least risky things first. I would be careful about too many epidurals if steroids are used, due to the risk of arachnoiditis, especially since the first one doesn't seem to have helped. The pudendal nerve is innervated by S2,3,4 so if it is pudendal neuralgia then a block at L3,4,5 would most likely not work. Have you tried a pudendal nerve block yet?

Violet

Hi Violet,
Thanks for replying so quickly. The more I read about mesh the more I feel that it really has made things worse. I am in a couple Facebook groups of people suffering from mesh implants and was surprised to see that some suffer from PN as well. Where is Dr. Hibner located? Would he do a consult without me traveling there? And yes it is Dr. Atashroo that I have seen 2x and like I said she wants me on a nerve med before I have a pudendal nerve block. I am extremely sensitive to medications. I have tried gabapentin and cymbalta. I didn't do Well with either one. I have had 2 rounds of vaginal trigger point injections and Dr Atashroo wants to try another one on me. She didn't do the 1st two so maybe I should have her try the 3rd. Good to know about the epidural in my back. I don't feel it has helped in fact it has flared up my back issues. Also good to know that some have had good results from the labral hip surgery. Maybe it would be worth a try. I also read your article on the doctor in Tennessee that does the injections. Not sure if I would be a candidate for that but that seems to be less invasive also. I guess I just want a game plan and not sure who to get that from. Dr. Atashroo or Dr Hibner?

Like Violet, I do not know if Dr. Hibner does hernia mesh removals. I know he does bladder sling removals which is a totally different ball game. It could be possible the hernia mesh caught part of the ilioinguinal or genitofemoral nerve. Has anyone suggested a block to those areas?

Before you travel to Dr. Hibner you should do as much as you can with Dr. Atashroo as Dr. Hibner will require you to have had pudendal nerve blocks and botox to the pelvic floor before he would even consider surgery. He will also want you to have tried medications even if you can't tolerate them. He won't just take pudendal blocks done by any physician but since Dr. Atashroo trained under him he will most likely trust if she has done the blocks and the botox.

There are other medications in different classes that might help that are used for off label use such as Mexilitine and Namenda. Like you I don't tolerate medications and have tried many different kinds in the same class and many in the different classes. It is all trial and error to see if you can find any you can tolerate.

Hi and thank you for your input. No one has suggested any type of block in the nerves that may intervate the hernia. I wish they would. I would be up for that. I have discomfort with the plug and mesh. The plug for sure hurts. Maybe it is pressing on a nerve. Thank you for the list of different meds to try. I will set up another appointment with Dr. Atashroo and see what is nect as far as meds and possible injections. Thank you so much for the information. It helps so much. I feel like I am searching for my own answers most of the time so any input really is a blessing to me.

Dr. Hibner is located in Arizona. http://www.pudendalhope.info/node/58#AZ I think you could ask Dr. Astashroo about the mesh and whether Dr. Hibner does hernia mesh removals. My guess is she would know since she trained under him. I don't think Dr. Hibner does phone consults prior to patients coming to see him.

You could also ask Dr. Atashroo if she could contact Dr. Jarnagin and find out how to inject the amniotic allograft. If she is willing to do the procedure it might save you a trip. I don't know if that would be the correct treatment for you since you also have the hernia and hip involvement but since your PT is saying it's pudendal related it might be worth a try.

Violet

Thank you again for your insight and suggestions. I can't thank you enough. That is a really good idea to ask Dr Atashroo about possibly doing the allograft injection. Anything is worth a try.

Thank you again for your insight and suggestions. I can't thank you enough. That is a really good idea to ask Dr Atashroo about possibly doing the allograft injection. Anything is worth a try.