Health Organization for Pudendal Education

Hello All,

I am 30 year old mother who was just recently diagnosed with Pudendal Nerve damage in January. I have been struggling with symptoms since the birth of my son in July. I was misdiagnosed for several months, and after undergoing several MRI's, and working with a pelvic floor physical therapist for urinary symptoms, I was finally sent to an OBGYN vulvodynia specialist. She diagnosed me with PN due to what they believe was compression and stretch injury to the nerve during his birth, despite my very uneventful delivery. (I only pushed 9 times and he was out!) I have been having a lot of radiating pain from my vulva to my right hip, and my MRI showed that I also have a labrum tear in the capsule around my right hip. My doctor said there is a connection between hip problems and vulvodynia, and with my symptoms, was concerned that my hip was contributing to continued and worsening pain. She sent me to see a hip specialist, who is not very aware of PN other than seeing it a surgical complication. He did a steroid injection, which really improved my radiating pain and has now officially given me the diagnosis of FAI, but wants me to start Physical therapy before considering surgery. He is also concerned about putting me in the traction position needed to open up the joint in order to get the tools in to fix the hip. He says this position can actually stretch the pudendal nerve in less than 5% of cases and he does not want to further risk any more nerve damage. I am concerned that Physical therapy is going to flair my symptoms, as any activity at this point really puts me into a lot of pain. Also, there was a case report titled " Vuvlodynia and Concomitant Femoro-Acetabular Impingement: Long-Term Follow-up After Hip Arthoscopy, by Dr. Deborah Coady, MD (OBGYN), and Dr. Struan H. Coleman, MD, PhD. (Orthopedist), that was a retrospective study, finding that women younger than 30 who underwent hip arthoscopy for FAI experienced lasting improvement in their vulvodynia. (Granted there were only 6 patients under 30 in the study, but all had improvement.)

I am curious if you any of you have had both FAI and PN, and what did your doctors reccomend. Did you do physical therapy first? Did you have hip arthoscopy? If so, what position did they put you in to do the surgery arthoscopically? Did your doctor seem concerned about further damage to your pudendal nerve by putting you into that position? If you have had your surgery what is recovery like? Are you out of commission, how long do they expect before you are feeling better? Did you do any physical therapy prior to surgery, After surgery?

I really appreciate your input, as I am just frustrated and so tired of being in pain despite being on high doses of Neurotin. I am also questioning whether I should get a second opinion with an orthopedist who is more familiar with FAI and PN.

Thanks so much,
Schnick86

Hello,
You could search the forum on the box in the righy top corner for FAI or hip to find out about others who have had this, surgery, etc. I think the HSS in NY NY had doctors who knew about both. Sorry I don't have more info but was lucky to not have hip issues. Best of luck. I remember the concern with the angle of the leg at surgery but cannot remember if there was a way to avoid it.
Janet

My thought is to always try the most conservative approach first, which sounds like physical therapy. It is important to find the right therapist who is willing to go slowly and who is open to your feedback during the sessions. Then, you always have the option of hip surgery down the road a bit. I would be especially cautious if there is potential that the surgery will increase your PN symptoms. I am not sure where you are located, but Dr. Coleman and Dr. Harris (I believe she has replaced the retired Dr. Coady) practice out of NYC, you could consider traveling for their opinion on your situation.

Stephanies

I do have a labral tear with fai impingement and suffer some of the same symptoms. It's excruciating and it has been going on for two years. I had a brief period of "remission" where I wasn't getting so much radiating pain from the V to the hip and down the leg. But it's back in full force with urinary frequency (again) and very tender abdomen in the area of the psoas and hip flexor, lower right pelvis and Into the Ischial tuberosity and high hamstring.
I did some internal pt but it was it wasn't a whole lot of help, I did flare most of the time afterwards. She worked on the obturator internus which is the internal hip flexor.
The hip surgeon said because of my age being over forty, the clinical outcomes were poor for labral tear repairs and that physical therapy should be as effective. He wanted to enroll me in his study but after one session with his PT, I was in extreme pain both in the hip and PN and genitfemoral nerve area that I couldn't go back. So here I am, suffering and with no hope to recover.
I had two cortisone injections to the hip with no resolution in the stinging groin and vulva pain. I recently had a lidocaine injection in the hip just to make sure my hip wasnt the cause of the nerve pain but I am so unconvinced that it's not the hip causing the pain since there really is no other Reason to have the PN
I have been up and down the doctor train. Even dr Conway in NH. He thought the hip was a factor but again the surgeon told me PN was overdiagnosed and he didnt really believe in the diagnosis too much so I got no where with him. My concern was that the position to retract the hip either for shaving down the bone or even total hip replacement will render me completely disabled and unable to work at all.
I have struggled to find things to comfort me in this debilitating pain. One odd symptom for me is that if I press on my lower right abdomen, inside the iliac crest bone, it puts pressure on the back of my hamstring really badly, like there is some kind of absess in there putting pressure on other structures and the pain level shoots up to a 9 after touching that area I havent heard anyone else talk about this kind of pain which almost feels like deep ligament or muscle pain.
Try conservative measures I would say. See how you feel in a few months. They say most people over the age of 30 have labral tears of the hip and only find out about them incidentally when they are having other issues. The physical therapist I saw said that surgery wasn't a good path to get on. But everyone is different and because you are so young you may have good results.
Best of luck and keep us posted on your treatments and progress
DakotaGirl

You might want to read this thread. http://www.pudendalhope.info/forum/view ... f=9&t=3487
You could also do a search on Lernica, Jax87, and Beverly's posts for more information.

Violet

During my pudendal journey, the HSS MRI (Dr Potter) revealed both pudendal entrapment (R STL) and R&L FAI. Based on my pain characteristics, Dr Potter did not believe FAI was the cause, and she was full-on pudendal as the culprit. Pudendal surgery proved her correct as I experienced immediate relief from the perineal burning.

You indicated you had pain relief from the FAI injection, so that may help you sort things out. You might try a pudendal nerve block guided by MRI for precise placement so as to help distinguish one relief from the other. Johns Hopkins has an expert interventional radiologist.

I know it can be a challenge to tease out origins of one pain from another pain in a region that may have multiple causes. In my case, FAI pain was very different from pudendal pain. Though the MRI showed FAI, I only experienced pain from FAI when I kneeled a lot at my work desk (compensating for not sitting pre pudendal surgery).

Bob

That was good info on the fai pain vs pudendal pain.
Where does the pudendal injection go again? In the buttock or in the pelvic area?

My injection went through the buttocks (entrance) to the nerve, and for me it is not painful, just uncomfortable. This method can target most any site along the course of the nerve before it goes into Alcock's canal. Bob

Thank you so much Bob.

I think overall the external pt has done more for me than the pelvic floor therapy.
I go to the pelvic pt but I often have better relief from having her work on my si joint,
Piriformis and hamstrings.