PGAD - persistent genital arousal disorder

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

Re: PGAD - persistent genital arousal disorder

Postby Aple2017 » Fri Sep 22, 2017 11:37 am

It is verynhard yo describe because sometimes it is uncomfortable amd hypersensitive in one spot sometimes everywhere else. This incomfortable feeling sometimes borders with pain. I would sau it is a nerve "pain?" Feeling. It is unpleasant when i stroke certain skin areas. Really feels like a merve issue. But since my muscles are tight I will try and work on that... Before medicating myself . Unfortunately, Inhad to stop breastfeeding as it was getying more amd more uncomfortable sitting for hours.
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Re: PGAD - persistent genital arousal disorder

Postby Aple2017 » Fri Sep 22, 2017 11:39 am

I am trying to not lose hope for the better outcome
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Re: PGAD - persistent genital arousal disorder

Postby wyleczsiezdrowiem » Fri Sep 22, 2017 1:05 pm

I do not know about your specific problem, but it falls under pelvic floor dysfunction. You need to find a doctor who understand this problem. Most do not. Then an mri or ct to look inslde. A doctor cannot see what is happening kmechanically , but it looks like a nerve is sending messages to your brain that are incorrect. There are PT who are wonderful and specialize in PFD. You get a refferal to that PT. They know how to find the nerve or area it comes from. They can often stop that by inner work that calms the nerve and physical movements to stop it. I have pudendal neuralgia. I have had to go to a pain center where the doctor specializes in nerve problims from your spine. My PT could feel the nerves working and told me i needed a refferal. The first one did not do pudendal work so i was very lucky i have a practice that dealt with pain managment other than pills. I am allergic to all opiods, nerve pain , and most medications. I have had a genetic study done to help get medications that works. These doctors do injections into the spinal area or nerves in
the spinal nerves . I do not ever have sedations. The pain is minor. Working in the pelvic floor is dfficult, but he has done more than 20,000 injections for jnerve pain problems.
There are other ways to work on the out of control nerve. Hard drugs are not the answer, although i have had 2 toradal shots. Out of desperation.
I take a very old antidepressent Amitriptlyne, it is a tri-cyclic type. It is also used succesfully for pain. I have taken it at night for 25 years and had no side effects , but a dry mouth. A doctor wanted to give me a newer ssdi called cymbalta. It just about killed me. I had side effects of my brain blacking out, while driving, sick, no memory, no concentration, dizzy, skin blotches ect. These are supposed to be withdrawl effects , but i had them all as side effects. The doctor gave me a drop down callender, but after the last pill i found out about the horrible pill from hill. It took over my life and reason to live. I was still taking my Amit. at night , so my brain still had a little fight left. I have started to have some hours without depression and think the devil pill cymbalta is losing control. People will take a horrible year to get off of it.
I am having a set of 3 nerve injections with CT scan amd electric pulses to find which pudendal branch is the problem. They are like spaghetti in the pelvic floor and control function and pain in your pelvic organs and legs.if that doesn't work there are other things they can do. It is 6 years of trying to find help, not get worse. I have been in bed for 7 months. I used to be able to lay down and the pain would go away, not since my last chiropractic treatment. My pelvis and sacroiliac do not work together correctly. So my punendal nerve can be pinched. I also have IBS, so that adds to the pelvic problem. My IC keeps under control with a oxytrol patch for smooth muscle relaxant. IC is now considered a pelvic floor dysfunction.
Do a lot of research from non advertising places.also make sure it is not old information. I like Mayo Clinic , Cleveland, and MD. This location has huge amounts of information.

I never thought about the nervous system being the place to look at for dysfunction and pain.
Good Luck to all of you having this disfunction.
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Re: PGAD - persistent genital arousal disorder

Postby coz69x » Sun Sep 24, 2017 8:54 pm

hi.. just thought I would post to leave some hop e :D - 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
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Re: PGAD - persistent genital arousal disorder

Postby sadie » Mon Sep 25, 2017 2:13 am

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
2007-2010 anitriptyline for PN, 2010 it caused severe dystonia
2010 PNB w steroids caused severe PGAD
11-2010 St Josephs NH. , ketamine drip, meds etc to stop nerve from firing, nothing worked
11-2010 - 3-2011 Elliott Hosp. Pain Manag. Center , 16 PNB w/ lidocane did not work
3-2011 bilateral TG surg., w/ Dr. Conway
12-2011 3TMRI, Dr. Potter, rt side nerve re-entrapped w/ scar tissue
3-2013 rt side re-do surgery w/ Dr. Hibner for PGAD
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Mon Sep 25, 2017 4:37 am

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: PGAD - persistent genital arousal disorder

Postby Nada678 » Sat Sep 30, 2017 11:32 pm

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
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Re: PGAD - persistent genital arousal disorder

Postby Laurina » Sun Oct 01, 2017 11:15 pm

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
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Re: PGAD - persistent genital arousal disorder

Postby Krl410 » Wed Oct 04, 2017 7:05 am

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!
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Re: PGAD - persistent genital arousal disorder

Postby Violet M » Wed Oct 11, 2017 5:41 am

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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