PGAD - persistent genital arousal disorder

[Violet M]

[quote="adelaidedeb" There must be something or someone that can help.[/quote]

Are you able to see Dr. Vancaillie in Sydney? I agree if physio and trying to relax haven't worked in 2 years, maybe it is time to try something else.

Violet

[adelaidedeb]

Do you know this dr in Sydney? Is she any good? I feel like im going around in a circle, ive seen soooo many drs and they all say the same its a nerve problem but no one is telling me exactly what is going on or something to take the edge off

[janetm2]

Dr Vancaillie is the main PN/PNE doctor in Australia and he does the surgery. If you check the list of doctors off the homepage you can get the contact information. Also there are probably posts about him in the Austalia section of the forum. He seems from what I read to be helping. Good luck.
Janet

[adelaidedeb]

I haven't been diagnosed with pudendal neuralgia. The mri showed nothing was wrong with the nerve. They just say my muscles were tight but now after 2 yrs the muscles are better still abit tight but my symptoms are just as bad

[janetm2]

I may have confused you but the doctor can diagnose or help with treatment, medicines, etc for the nerve (not necessarily just surgery). Also MRIs do not always show issues with the pelvic nerve. I thought if you were going around in circles he could evaluate to see if it is the nerve and possibly sent you to someone (physiotherapist -some are listed on off our website that are PN aware to work on muscles). Oops ignore the physio you already said that was not working. Fyi I started with pelvic muscle spasms and then cleared those up twice and third time it was actually found fron my physical therapist that the two ligaments around the nerve were so tight they compressed the nerve. Physio sent me to a PN aware dr because the therapy was not working and would not fix the PNE. They did help me with recovery from surgery. Also the MRN I had did not show the PNE.
Janet

[Violet M]

Do you know this dr in Sydney?

Dr. Vancaillie works with a team in Sydney and has an excellent reputation on this forum. I don't know him personally but Catherine A does and she could tell you more about him.

An MRI doesn't typically show nerves although my understanding is that the team in Sydney is using protocol that gives pretty clear images. Even so, MRI's and MRN's aren't 100% accurate when it comes to pudendal neuralgia.

Violet

[LucySky]

OH My God I Am dying here! It's been almost a year with PGAD and I"ve done everything under the sun except a vestibulectomy which has been proposed by Dr. Goldstein in San Diego. Still holding off on that idea but shit I don't know what else to do. This has LITERALLY WITHOUT EXAGERATION taken all the life out of me and everything from me. I can't do anything anymore. I have a 1 year old and a 4 year old. How am I to be a mother to them? I am in constant misery. There's gotta be SOMETHING out there for this!

[Melanie9999]

How are you Lucy? I am worried about you, if you want to tell me briefly what you have tried then you can, if you have already mentioned it in previous post I can't find it but I will have another look. If the PGAD is the worst have you tried an antidepressent that gives you sexual dysfunction like Citalopram etc, it got rid of my PGAD the first day I took it but I felt so high I didn't sleep for 2 days. I don't think it has that effect on most people, I think I am ultrasensitive to drugs. Especially drugs that can give insomnia, they make me feel hyper but anxiouis in a bad way. I like being knocked out with Amitriptyline alhtough it is not helping my pain in the long run, it is just helping me sleep. Let me know how you are when you get a chance. I personally know 2 other ladies in the same boat as us, we have to help each other,you are not alone xxx

[Melanie9999]

http://www.thelowback.com/why.htm

Hi everyone, just wanted to post this page above which shows exactly why SI joint dysfunction can cause pudendal neuralgia, mentioned near the bottom of the page, might be useful for your Consultants.

xxx Melanie

[Karyn]

Thanks for posting the article, Melanie!
Much of it makes a lot of sense. Hard to understand why those of us who've been treated for SIJD have had such a difficult time having it corrected.
Kind regards,
Karyn