Health Organization for Pudendal Education

Jackie,

(I posted an earlier response but I seem to have lost it, so here it goes again.) You said earlier that your hip does feel better, so you don't have to lie about it! Just focus on the hip with your OS, not the pelvic/perineum pain. I learned early on this journey that you have to focus your conversations with doctors in the area of their expertise. Otherwise, they tell you they can't help you. At my first appointment with my OS, I complained mostly about my perineum pain. His told me that he couldn't help me with that and to basically go away.

When I came back with more imaging and he saw the pathology (namely FAI), he agreed to do the scope. At that appointment I didn't even talk about the PN; only the hip pain. Then he was all bushy tailed and keen to go.

Good luck with everything, and please keep me posted.

Lernica,
That is really helpful advice. I did flare up a little in my hip joint this evening as the initial part of the injection wore off, but I definitely had some relief right afterwards. (like down from a 5 to a 2 in some stretches) I also think there was so pelvic floor help too. We will just watch and see. I don't want to have surgery if I don't need it, but I definitely want to have stable hips that don't hurt! Next time I talk to him I will focus on the hip relief with the injection.

At least his PT is 100% convinced of the connection in my case. It felt so good to have someone say definitively that my hip was causing my pelvic floor pain, and he is someone who sees people with hip issues all day long. He actually told me to stop focusing on internal work with pt and start focusing on my hips. Yay.

Thanks for all of your help,
Jackie

Jackie, your PT rocks! You are lucky to have a team that knows how to connect the dots. I've had to educate mine. With a team like that, you are going to get all better, girl!

I saw Dr Coleman at HSS Yesterday and he wants to do the steroid injection too. I am scheduled for sept 14 and to see dr c again 6weeks from now to determine next steps i.e. surgery. I have to say i am extremely freaked out about worsening of symptoms. My gosh one of the complications iinvolves the pudendal nerve. I dont want to be worse i have a baby to take care of and its hard enough as it os . Beverley had posted on here that she spoke with 5 women, 1 of whom got worse and new others that got worse as well. But also women whom had success' with the surgery. I would really love to talk to anyone else whom has had the surgery, good and bad. Please PM me if would rather not disclose on the board.
Healing thoughts and prayers to all

Pregmom,

I am six weeks post-op on the left (PN) side. Both my hip pain and sitting/perineal pain are improving slowly each day. Beverley has also reported improvement in her PN pain. She is now 7 weeks post-op.

But you don't have to make a decision about the surgery right now. Wait and see how the steroid shot goes. The steroid injections in my hips had no effect on my PN pain. The pudendal nerve is nowhere near the hip joint. And if the injection helps your hip pain, it will be useful information for your decision about surgery, which you can make later.

We PNers seem to be keeping hip surgeons busy these days, especially at HSS! Good luck in your treatment decisions.

Good to hear you and Beverley are doing well Lernica, I agree with your advice. No one recommends rushing into surgery, but it does seem to be helping those with the right criteria. Something to keep in mind on your PT journey, Pregmom, is that in my experience, PTs seem to over promise what they can fix. They are a great tool, but they have limits.

I also wonder if some of the women who became worse after the hip surgery did not have proper after care involving lots of PT and proper exercises to realign the muscles. Just a thought. We are all pioneers!

Hugs, Jackie

Definitely intrigued by what you all have said about hip/PN issues. I have had issues for years and was just diagnosed with hip arthritis on both sides. Had an injection to no real avail. Just had a bilateral PN block today. It may not have been wise to get a hip injection and then a PN block with out having the docs consult with each other......but anyway. Does anybody have experience with arthritis and PN? I am a male by the way.

Thanks in advance.

I am 8 weeks post op. I am still taking 30mg of Elavil but have NO PN PAIN as long as i dont wear tight jeans. Sometimes i even forget that i have it! I am still doing pelvic floor PT but am not having the post surgery flares that I mentioned earlier. FYI, i didnt really experience huge improvement in my hip pain when i had the hip injection. I am still doing massage, chiro, rolling on a foam roller, anti-imflamatory diet etc. My hip feels good but is still weak. I feel very hopeful.

That's wonderful Beverley! Are you able to sit without pain as well?

Wonderful! You have given me so much hope Beverley, thank you for posting!!