New hear..Not sure if I have PN?

[Chex]

6 months ago, I had a vaginal hysterectomy with a very bad recovery. I went to the dr. over 7 times back then for what seemed to be symptoms of a baldder infection. I was put on antibiotics about 7 times even though the results came back negative. Then an ultrasound showed that I had a hematoma and the dr. said maybe it pressed against a nerve and caused the symptoms of a bladder infection. I had pain that radiated from one side of the groin into my thigh. I had the same leg go all pins and needles and both feet went pins and needles. The same side arm went pins and needles also. I had exrays of my cervical spine and lower back but they came back negative. For 4 months after the hysterectomy, I felt like something was stuck inside my vaginal on occasion. For most of the time it felt like there was a fish hook stuck high inside. At around 4 months post op, I felt like I had a sore lesion on just outside my vagina but the dr. said there was nothing there and he said it could be nerve pain. Around that same time new symptoms started.

My vulva, in front of the vagina began to tingle and sting. My clitoris and that area had pins and needles. I was put on lyrica and it seemed to help at first, but then did not..so I had to up the dosage to full strength. the lyrica stopped the pins and needles in my extremities. The pins and needles have stopped but I have been left with a stinging sensation around the urethral area and inside the urethral area. It gets worse when I sit. I was also started on Cymbalta 2 weeks ago and am up to 60mgs daily. The stinging does not happen anymore when I close my legs lying down but it still stings when I sit. Sex does not hurt. Rubbing the clitoris is nice at first but then it just gets numb or annoying.

The dr. said that if I didn't feel better after one week of the 60 mg of Cymbalta, to quit taking it and go back to see her. Since it doesn't hurt anymore to close my legs when i lie down on my side, I'm thinking that maybe it started to help but it still hurts and stings to sit so I'm not sure what to do.
It always feels better to stand up and to walk.

Can anyone help please? Could it be PN? Should I stop taking the Cymbalta or continue to see if the hurting stips when I sit?

[carolynm]

Welcome Chex!

Your symptoms sound suspiciously like PN. Take an information sheet to your PCP and get a referral to a physical therapist (hopefully there is one close to you listed on the home page). I'm so sorry you are dealing with these horrible symptoms but we all can understand what you are going through. Many people have had good luck with Cymbalta so maybe you should stick with it. Let us know what else we can do to help. We are all on our own journey's and in different places dealing with this condition. There are so many helpful people and good information on this site. You are amongst friends.

take good care
cari

[HerMajesty]

It does sound like PN and unfortunately since it happened post - hysterectomy with poor healing, I think there is a good chance that you have PNE, pudendal nerve entrapment, involving scar tissue. If you check the MRI/MRN section of the board you will see a Radioligist Dr. Hollis Potter does specialized pelvic imaging to identify scar tissue entrapments; she is in NY but many people travel for her services. I believe there is a Dr. in Arizona who does something similar if that is much closer to you. Doing this would help you to determine if you are a candidate for pudendal nerve decompression surgery.
If you try Physical Therapy first, only stick with it if you begin to see results quickly. If your nerve is entrapped in scar tissue the PT might exacerbate your symptoms. I got very good results with PT but I also do not have a reason to suspect scar tissue entrapment (no pelvic surgery, endometriosis, etc). The PT started helping me right away and never made me worse. Many PNE patients on this board who have needed decompression surgery, have first suffered through painful and ineffective PT. I suggest if PT does not help you quickly, you sound like a candidate to go the medical route instead.

[Chex]

thank you for the replies. I did go for a physio treatment as the dr. had said I had pelvic flor disfunction. The treatment itself was not painful and was very gentle. I had a horrible flare up for 4 days after though and couldn't sleep. I'm not going back of course. I'm now refered to a pain clinic but it will take up to a year to get in.

[HerMajesty]

Where are you located, where you have to wait a year for a pain clinic? PN can make a lot of inroads in a year so I'm worried about you. If you go to the main website menu for HOPE and click on the "Find a Doctor" option, do you have a way to access any of the Physicians listed? I had almost instant access to pain clinic but they don't do much more than you are getting now with trying different meds; they do nerve blocks but those are not curative if PNE and can try a few additional comfort measures. But if you are looking for a cure you most likely need a Dr. who specializes in PNE. If you have to sit on a waiting list for a year, can it at least be for one of those?

[Chex]

I live in Canada and would be dealing with the Ottawa pain clinic.

[nyt]

Chex, I am so sorry to hear of your troubles. My PNE started after my hysterectomy and your symptoms and course of pain sounds very similar to what I had and still have. There are several individuals on the forum from Canada. Contact one of them as they should be able to help you navigate the system. There is one dr. in Canada that specializes in PNE so see if you can make an appointment to get in and see them.

[HerMajesty]

I agree with nyt, don't take yourself off the waiting list for pain clinic but don't make that the only thing you have going either. The PN team in Canada is close to you (assuming you are also in or around Ottowa), in Toronto, here is the thread about who they are and where they are: http://www.pudendalhope.info/forum/view ... ?f=53&t=59
Also if you didn't see it, there is a current duscussion going on about travelling to the USA for care, here it is: http://www.pudendalhope.info/forum/view ... f=2&t=1714
This is something you might need to consider because from what I am reading about the Canadian providers, it doesn't look like decompression surgery is available there at all if you need it. I was just looking over the info now for the 1st time so I might not be correct about that, please don't take my word for this but do contact forum members from your own country for more info on what is available there.

[helenlegs 11]

Good luck Chex,
A lot of good advice above, let us know how you progress you will always find people willing to help and of course there is such a lot of good information on the home pages.
Take care