Health Organization for Pudendal Education

Ouch, lifting heavy stuff could definitely be a factor. The drugs could play into it too but it seems really important to at least get an evaluation for musculoskeletal problems that could be contributing to the problem -- like chronic ligament strain or SI joint dysfunction related to the heavy lifting.

Violet

Can those all be seen on a regular MRI?. I will definitely look into that stuff. This would be so much easier if pgad and pn was caused by one thing only. Thanks again.

No, an MRI wouldn't necessarily show musculoskeletal problems like sacroiliac joint dysfunction or ligament strain. A good manual therapist or pelvic PT should be able to evaluate for those types of problems.

Violet

Oh, I wasn't sure. I think I'm gonna ask my doctor to not take me off Lyrica till I can get through the holidays. I start cbt tomorrow and will try to find good PT. If this doesn't get me anywhere think I'm going to make 6 hour drive to Dr. Echenberg. Thanks so much for all the great advice. Oh, and by the way. The Doctors Show yesterday had a episode on about PN.

Also just found out my insurance won't cover pgad stuff cause there is no such code. So now everything out of pocket. This is stupid! I'm gonna see if she will try a different code for my insurance.

Have the doctor code it as chronic pelvic pain. Dr. Echenberg considers PGAD to be a pain syndrome and I would agree with him.

Violet

Called my doctor, they won't change code cause they consider pgad a sexual arousal disorder not pain disorder. They said if they change code it would be insurance fraud. Also why does insurance cover male arousal disorder but not female? Makes no sense. I'm hoping neurologist will maybe help better. Thanks for letting me vent.

Are you having any pain at all? If it felt like you had a UTI but there was no bacteria in the culture that sounds like pain to me. If so, I don't see how it could it be considered insurance fraud. Makes no sense at all if you ask me. Maybe you could appeal this to the insurance company. Maybe time for a new doctor if they won't help you out with this.

Violet

Violet, I totally agree. I had pain when they thought I had UTI. They thought I had kidney stone because of the lower back pain into the buttock area. I still have the stabbing buttock pain. My bladder doesn't hurt as much anymore, just frequent urination feeling. It does sometimes feel like I got kicked between legs, not sure if that makes sense? I also am feeling pgad in rectum and vagina area also. I am getting what I think may be restless leg. My husband says I kick him at night and I will wake up with my leg tingling. I go back to obgyn Tuesday. If she wants to be difficult I will be looking for new doctor. I'm not sure if neurologists will understand more. I went to psycologist the other day for CBT. The breathing does help calm me when I flare. My doctor thinks anxiety is bringing on flare, but I don't have anxiety till I have a flare. So frustrating. I am trying to make my doctors aware this is a real problem and people with this need to be taken seriously. Thank you again for your response.

Yep, I had that frequent urination and "kicked in the crotch" feeling too -- along with the PGAD. I also have restless leg syndrome which doesn't bother me much at night as long as I exercise. I completely agree that the symptoms cause anxiety -- not anxiety causing the symptoms.

It will depend on the neurologist as to whether they would "get it." My neurologist said "neurologists don't treat nerve problems" and sent me to a psychiatrist, so I understand your frustration with docs.

If there is a code for chronic pelvic pain, that is the code they should be using, especially since you have that kicked between the legs feeling. They could use code R10.2. http://www.icd10data.com/ICD10CM/Codes/ ... R10-/R10.2 What treatments are they providing for PGAD that are completely separate from the pelvic pain? My guess is that there aren't any that are completely separate. It's impossible to separate all of the symptoms since they are obviously all related. Good luck with your appointment Tuesday. Let me know how it goes.

Violet