PGAD - persistent genital arousal disorder

[Violet M]

Hi thanks for writing back. I meant that everytime I urinate it flares it up. I can keep urine in my bladder for hours and I only do this to keep sane otherwise just like now im so flared up after urinating an hour ago. My stream is very good and I don't leak any urine. THey said my muscles were too tight and im trying to relax the pelvic floor all the time. These other drs do they have other woman the same as me? I don't read much of other ladys that it stems from the urethra. The whole tube is hot and give out the WORSE urinary arousal pressure. Ive had utis a lot but the last year not so many as im spending a lot of money on acidopholous powder and other things to keep the bladder clean.

Using the bathroom used to be a major problem for me and I dreaded it. BM's were worse than urinating though as it caused pelvic floor muscles to go into worse spasm. The pudendal nerve innervates the urethral sphincter so it's easy to see how urinating could set it off. TMI I'm sure but just wanted you to know I feel your pain.

Violet

[adelaidedeb]

what does BM mean Violet? So that pudendal nerve goes through the bladder neck? It feels like ive got a metal rod inside today its sooo high pitched:-(

[Violet M]

what does BM mean Violet? So that pudendal nerve goes through the bladder neck? It feels like ive got a metal rod inside today its sooo high pitched:-(

BM = bowel movement.

The pudendal nerve innervates the external urethral sphincter.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3469827/
http://tinyurl.com/lc7sdv4

The bladder neck is above that.
http://www.ivy-rose.co.uk/HumanBody/Uri ... Female.php
http://tinyurl.com/6svj9ct

Violet

[LucySky]

Hey everyone. Haven't been on here in a few weeks or so due to the holidays and dealings with the kids ,etc.
I am still on the search for help with this PGAD. I have tried so many things. Since the post I had on page 27 or 28 with all the meds I tried for this I have also tried...Bupenorphine (Butrans Patch 5mcg / hour) , Viibryd and back on Neurontin (up to 2400mg a day) and take Clonazepam at night. NOTHING...absolutely NOTHING has helped me with the insane disorder. The only thing that has help is Prednisone I know how terrible that could be if taken long term...but I'm about there. The Butrans Patch made a dent in the PGAD symptoms , however, it caused SO much constipation because it's such a strong narcotic that the ONLY way I was able to have a bowel movement was if I took a laxative and that was a violent experience to the bathroom. Not fun. So I stopped taking the Bupenorphine. I feel like there gotta be some kind of surgical procedure out there that can collapse the vein or stop blood flow to the clitoris or something. I am miserable and I have a 4 year old son and 10 month old daughter. This is beyond hard. I am never in the moment with my kids. PGAD is all that's been on my mind for 8 months now. It's robbed me of every damn thing. I am having one of those many nights where I just want to take a handful of pills and just let the misery end. It's not fair for ANYONE to live like this.

[Violet M]

Lucy, I agree PGAD is pure torture, exhausting, overwhelming....really can't think of enough negative words to describe it.

Another member of the forum with username "carolynm" posted not too long ago that pulsed radio frequency ablation cured her although pain came back after she tried riding a bike and she had to do the procedure again. She had PGAD and kids also so maybe you could do a search on her posts to read her experience.

I understand your desperation because I was beyond desperate too. I'm not sure what is the next option that would be best for you to try. I know I was desperate enough to try surgery even though at the time I did not know anyone who had been cured by surgery. I now know some other women, including myself, who have had excellent results from surgery. But it's a huge decision.

I understand the thoughts about taking a handfull of pills. I've been there -- when I didn't know what my diagnosis was and everything I read online made it seem like this condition is permanent. But now I know there are some treatments and quite a few women who have gotten well and that it would not make sense to take that handful of pills unless you have tried every option available to get well.

Not sure what laxative you tried. Magnesium citrate taken on a regular basis should not give you a violent experience in the bathroom. Miralax works well for some people too.

Have you tried steroid suppositories yet? Maybe would give some relief without as many side effects. Also vaginal narcotic suppositories might help without causing so much constipation.

Just brainstorming, trying to think of anything that might help.

Violet

[stephanies]

I have had clitoral discomfort as a "new" symptom the past few months (not actually PGAD, I don't believe) along with some neuropathic itching in the same area. I tried the Allegra cream (over the counter at grocery store) and I apply about once a day. So far it has calmed the itching and the majority of the discomfort in that specific region with no problems or side effects.

[fashionista]

Hi

first I want to tell you how grateful I am to you for existing this forum.

I am going to introduce myself and I hope it is okay if it is a little bit long but I have to write all these from my heart if not I am going to kill myself.

I am 30 years old and married. I think I develop PGAD when I was 16 or 17. I never masturbate myself. At that time I didn't know what I had.
I had some tingling feeling inside me.
I thought sometimes what is wrong with me.

I come from a culture where you don't speak open about this thing. I am sure that women from my country have this and but they don't talk or see a doctor.

Then I moved to Canada. Everything went well until last December. My husband and I don't have sex many times. He is stressed with his job and I am busy with my things.
So in December we had sex after a long time. After that I started to see that I have to pee more than normal. Even if I went to pee after short time my bladder started to annoy me like it isn't fully empty. It was more tingling from inside and my bladder was always annoying me.

I went to see the doctor and he did a urine test. No bacterias no infection only blood. So he sent me for ultrasound, transvaginal ultrasound and x-ray.
I got the results. Everything fine but I have still problems with my bladder. It sounds like irritated bladder.

I don't know what to do. I try not to become crazy but I can't. I have nobody with who I can talk. I am crying the whole. Even now I am crying. I started to get anxiety. This is no life. I don't what I did wrong that God punish me with this? Or what did we do wrong?

I live in Toronto Ontario Canada. Can someone of you give me doctor address where I can go and see them?

Is there any medication which helps really for this tingling inside me?

Thanks again.

[Laurina]

Medication like neurontin or lyrica can help calm down an irritated pudendal nerve that travels to the genitals and the bladder. Nerve blocks and pelvic floor physical therapy helped me as well. There are two support groups besides this one where members can post their questions:

http://www.psas-support.com

http://health.groups.yahoo.com/group/psas_group/

Here are some healthcare professionals in Ontario who treat this disorder or who are at least aware of it.

Carolyn Vandyken, B.H.Sc., P.T., Cred MDT, C.C.M.A. (Acup)
Clinical Practice Leader, Pelvic Health
Physiotherapy Associates of Cambridge
163 Hespeler Rd.
Cambridge, ON
N1R 3H7
519.624.8798
carolyn.vandyken@lifemark.ca

Nelly Faghani, B.Sc. P.T., M.C.P.A.
Aurora Prime Physiotherapy
372 Hollandview Trail

Aurora, ON

L4G 7H2
905-726-2252
 nelly@prime-physio.com

Dr. Allan Gordon, Neurologist and Director 

Wasser Pain Management Centre 

600 University Ave. 11th Floor 

Toronto ON
M5G 1X5
416-586-5997 wasser@mtsinai.on.ca


Dr. Deborah Penava (Obstertrics and Gynecology)

The University of Western Ontario

St Joseph's Health Care London

SJHC D1-221

268 Grosvenor Street

London, ON

N6A 4V2

519-646-6401

Dr. John Lamont, gynecoglogist (PGAD-Aware)
Sexual Medicine
HHSC, Henderson Hospital Site
711 Concession St.
Hamilton ON
L8V 1C3
905-574-8606

Dr. Hart Bressler, DC, MD

Headache & Chronic Pain Management

4839 Leslie Street

Toronto, ON 

M2J 2K8
416-498-3600

[adelaidedeb]

I am taking one day at a time. If I think it has been 14 1/2 yrs of constant unbearable its not even pain (pain I can handle better)such unbearable orgasmic urinary pressure my heart sinks and I feel like screaming. There must be something or someone that can help. It seems my symptoms are not the same as others on here. Its so bad at times I have to sit on an angle on my anus and that pressure dulls it down abit so I can breathe. I am FED UP with hiding away and using a dam machine to take that fowl orgasmic pressure away. THe nerves are way oversensitised. I have been to every dr you can think of, chiropractor, naturopath. I have been told im too tight there and that is why I have this fowl feeling and I have been 2 years going to one of the best pelvic floor physio lady in Australia but I think im wasting my time. If physio and relaxing would help why in 2 yrs there is no difference. They have left me on my own now I get so down going to dr appointments and them not knowing what I have or I will have to live like this. I have to be honest this is the worse feeling ever, I have had an 11 pound baby, tummy tuck, really bad infections but NOTHING is worse I don't think cancer in the urethra would be a worse feeling. I tell drs imagine you have the runs, your anus is burning and there is no toilet and you have to go to a party standing up and you have to breathe past all that unbearable pressure and a crap is hanging half out and even if you go and crap after an hour it builds up again worse. When its really bad or I have an actual bladder infection I feel like getting put in a coma, you can orgasm over and over and over and the nerves get worse and you have no idea what to do with yourself. If I had an accident I would be more concerned if this flared up than other life threatening injuries. I want to go overseas but... no way I have to sit most the time and cant move. This endep has stacked weight on and does nothing. Sorry just having a vent I cant believe its been all these years and missing out time with my kids sucks. Im fed up with walking around the shopping centre holding my breath from the freaking unbearable pressure. I hear people whinging on facebook about stupid colds AGRRGGHHH they have no idea dealing with pain every min of the day for years.

[Melanie9999]

It's so awful so many of us have this PGAD and bladder symptoms. Have any of you had a defecating proctogram? I have had one and it showed a non relaxing pelvic floor. I also have bowel movement issues (I can't go without digitating). The pudendal block did nothing but made it worse to start with and I couldn't walk that day either. I am seeing Mr Anthony Dixon tomorrow in Bristol. I suspect the next move will be botox to the pelvic floor. I am scared that it could make things worse but don't know what else to try. I suppose if my pelvic floor is that tight it is probably choking the pudendal nerve. I have to try, but I am worried that my back will get worse after botox to pelvic floor, as I have a bad back and my abdominal muscles have been cut through so many times that they are so weak and feel spasmy too, but it could be the bladder that is spasming I suppose, Hugs to all of you x