Health Organization for Pudendal Education

The only treatment that has been done for pgad is Lyrica, herbal supplements and CBT.I do have autoimmune issues and have family members with ms and lupus, but I don't think that is it. I have had blood work my Ana is borderline and creatine was high. Today my cheek started twitching really bad (not the eye) and my leg will jerk when I'm sitting. I will get answers, because I am stubborn and won't take I don't know for a answer (ask my husband lol).

Good for you. I like that attitude.

Well, lyrica, supplements, and CBT can all be used for pain so I don't see why they can't code it differently. Hopefully your obgyn will be reasonable about this.

Violet

Hi Violet. My doctor decided to keep me on Lyrica. She upped the dose for night time. She is sending me to a physical therapist. She agreed it could be pudendal nerve. She said she doesn't know much about it, so said Cleveland clinic would be best option. I'm going to try pt before going to Cleveland clinic to see if it helps. Thanks so much for all the help. Oh and she changed the code to anxiety so insurance would pay. She didn't want to do pelvic pain since she doesn't know much about this issue. Happy Thanksgiving!

Hi Joelle,

It sounds like you are on the right track, at least getting a PT evaluation to see if there is a musculoskeletal component to your symptoms. Hopefully the PT will be able to give you some valuable info and some therapy that helps.

Violet

Hi Violet
Is there anything specific I should tell physical therapist? Like what they should look for. I'm really hoping they know about PN. Thanks!

My PT pressed along the course of the pudendal nerve at the ischial spine and alcock's canal to see if it was tender there so hopefully your PT will know how to do that. They should also evaluate you for SI joint dysfunction and pelvic misalignment. They will also be assessing your pelvic floor for tension. There's lots of other stuff they will check for too but I can't list it all here. This link will give you some more info: http://www.pudendalhope.info/node/50

Violet

Thank you Violet. I will write everything down so I remember. If they don't do that guess I will look for another.

Hi Violet, went to PT today. She agreed that this is most likely PN but she doesn't do internal. She was really nice and didnt charge me. She gave me number of someone else.

Hi Joelle,

Well, I think it's probably important to see someone who can do an internal assessment of the pelvic floor but hopefully you won't have to travel too far. If too much driving flares things up it sort of defeats the purpose but you could at least go once for an evaluation.

Violet

Hi Violet, I want to thank you again for all your replies. Makes others and I not feel so alone. Through all these issues met alot of great ppl with same issues that have now became friends . The PT is almost hour away and weather here in Ohio getting bad. So hopefully can make it there. She specializes mostly with pelvic issues and pn. I have been having pain in left buttock under the butt cheek. Horrible lower back pain, when back pain starts pgad does also. And stabbing pain in left cheek in one spot. I have some days with no symptoms at all. Laying down at night seems to make things worse. Really thinking as u said before something with piriformis muscle. Would getting a back and hip x-ray maybe help to see issues? I know it won't see entraped nerve, but thought maybe see if something is off maybe causing issues. I also can not lay on my left side because it causes pain. Thank you so much!