Health Organization for Pudendal Education

hi.. just thought I would post to leave some hop e - with seeing skilled pelvic floor specialists in Birmingham uk, seeing a urinary prof on Harley St London & with meditation, listening to nerve healing frequencies on youtube as I sleep a long with pregabalin & amitrip - I am 90% cured of pgad. People who are reading in complete despair, I was in your position I was suicidal but there is hope, for everyone to find their triggers and attempt to resolve them. I longed for positivity in Feb when I first developed this horrendous disorder. Anyone who wants private message me for info/advice. Everyone has hope of feeling better one day.
xxx

coz69z
I'm really happy for you, but want you to remember that amitripryline is an older drug and the longer you are on it and the older you are, the more chances there are of this drug causing trouble. I am again, so very thrilled that you have calmed your symptoms, but i wish some one had warned me about the amitriptyline. As after 4-5 years it caused sever dystonia that took 9 months to leave and was horrifying. I hope in the mean time now that you can catch your breath, your nerve will benefit from PT or what ever you have planned, and the nerve heals forever. thank you for posting such happy news...isn't it great to actually get to sleep like a normal person ...its heaven!!


blessings to all Sadie

Thanks for sharing your experience, Coz. I agree it is so important for us to hear from people who are coping and doing well.
If you do ever decide to try weaning off the drugs I think it's important to do it slowly so your body doesn't experience too big of a shock. But for now if they aren't causing too many side effects that's great -- maybe continue with what works, eh?

Violet

Hello

I would like to go to a Pelvic Floor Therapist for PGAD (Privately) I live in South West London, UK. Does anyone know of anyone good in that area (or any good NHS pelvic floor physiotherapists)?

Thank you

Nada

Hi Nada,
I have heard good things about the following physiotherapists, but I have never met them. They are all familiar with the treatment of PGAD.

Maria Elliot PT
London Medical Centre
144 Harley Street 

London UK
 W1G 7LE
0845 6769699

Lucia Berry PT
The Women's Wellness Centre
Chelsea Walk
274-276 Fulham Road
London SW10 9EW
020 7751 4488
or
Chelsea and Westminster Hospital
369 Fulham Road
London SW10 9NH
020 3315 8404

Marta de Oliveira PT
Sayer Clinic
80 Coleman St.
London UK EC2R 5BJ
020 7937 8978

Helen Keeble PT
White Hart Clinic
10 White Hart Lane
Barnes
London SW13 0PY

Has anyone successfully obtained disability? I'm seriously considering doing so. However, I believe in the past I have read that it is almost impossible to get disability for this illness.

Also, what is the process like? (For anyone who has at least tried to get disability or was actually successful in doing so)

Thanks!

Yes, I've known PN patients who got disability. Some people apply for it themselves and some get a disability attorney. Sorry, I don't know the details of the process. Some people have posted about it in the disability section of the forum.

Violet

hi Amanda

I am not sure if you have access to compounded lidocanes where you are, but I get a 10% compounded lidocane from a pharmacy hours away from my home, and they ship it to me ...they even ship it in ice packs in the summer . if you want more info on that I am sure my pharmacist will be happy to email yours in which ever country you are in ...just send me a PM.

It is a cream that i keep in the refrigerator and it is amazing on burning and itching on the vagina area , but only works a little on PGAD..... but any PGAD help is great in my book. I found the 2% and 5% lidocanes do nothing for me . ...they were not strong enough.

I use Salonpas HOT patches (that i believe were meant for back and neck pain etc) for the PGAD that is anywhere except the clitoris...for instance, i can have arousal in the labia minora so I wear a sm patch over the labia minoria (i make little patches cut from the lg patches that come in the box.) . They have menthol and capsaicin on them and they stick on great and the cool burn balances the arousal and works great . I use the larger patches when the arousal goes to the crease of my leg in the genital femoral area etc and could not live without this product.

I hope this helps as my heart goes out to you , Sadie

Has anyone tried any medications that were successful in treating their pgad? I'm currently on 500mg of gabapentin (once daily) and only notice relief for the first few days after upping the dosage. After that my pain goes back to normal I'm interested in non-opioid options like amitriptyline, lyrica, lexapro... for those who use lidocaine patches, does it help with the sensitivity near the bladder and urethra? Thanks in advance!

Yes, lexapro took about 75% of the PGAD away for me. But since some women say that going off SSRI's caused their PGAD, when I eventually went off lexapro I went off very slowly over the course of a year.

Violet