PGAD - persistent genital arousal disorder

[Laurina]

Hi Adelaide,
Other women have complained that urinating makes their arousal symptoms much worse. I had bladder spasms and often a burning urethra, which my doctor explained as being part of the same package as PGAD because the bladder, urethra, uterus, rectum and genital area are all fed by different branches of the pudendal nerve.
Have you considered consulting Dr. Vancaillie?

Professor Thierry Vancaillie OBGYN
Royal Hospital for Women
Barker St
Randwick NSW 2031
02 9382 6111

[Violet M]

Violet what symptoms did you have? And why did you go to france for nerve surgery?

Symptoms were a scary mixture of PGAD, pain in the distribution area of the pudendal nerve, and urinary symptoms that started after I began a weightlifting program. I was pretty much glued to my couch and not sleeping very well so I was willing to try anything.

The reason I went to France for surgery was because PT and other conservative measure weren't helping. Also, I had chronic ligament strain and pelvic instability and Dr. Bautrant's approach doesn't cut the ST ligament. PGAD is essentially cured now and my pain levels are much lower, so surgery was worth it, but it may not be the right treatment for everyone. Unfortunately with this illness, sometimes it's hard to get an exact diagnosis and it's hard to know what treatment to pursue next. What options are you considering now, Deb?

Violet

[adelaidedeb]

Dr. Vancaillie does he know a lot about pgad? I see a lot of drs go on about tightness in the vulva and physio therapy. One specialist said I was very rock hard but after learning to relax there next time she said i was aot better. BUT.... ive seen to gone worse lately and physio therapy does nothing and blimmin expensive plus I cant see how just doing little excercises will get rid of this!!. Ive seen soooo many drs I just get too teary having to see someone else and go through allll of it again. It would be bad enough with a painful urethra but its this dam orgasm freakin pressure that is soooo embarrassing:-(

I am seeing a dr Margaret taylor shes going to try neural therapy. Already had 25 needles with no success but she will try deep in the groin and see if that helps the nerves.
Weird symptom I have is I cant STAND putting my finger in my belly button it give off that horrible arousal high pitched nerve feeling and hits like a metal rod feeling in the urethra/clitoral area where this stems from. Does anyone else have this?

[Laurina]

Hi Deb,
Dr. Vancaillie knows a lot about PGAD and pudendal neuralgia, he is one of the top doctors in Australia.
Once I had pudendal nerve blocks done, my PT could not believe how much it had helped my pelvic floor to relax, she even thought it might be a good first step before physiotherapy. These nerve blocks were repeated every couple of months and helped bring down the annoying arousal sensations to a point where I am symptom-free as long as I follow my treatment plan (lyrica, physiotherapy, anesthetizing gel, home exercises, etc.)
I also had painful urethra (uretheritis) and bladder spasms - they often woke me in the night, but it is actually physio exercises that helped me get that under control (I had tried suppositories for pain which also helped some, as well as pyridium).
Regarding the belly button sensations, I came across an article stating that in the womb the belly button skin is made of the same type of tissue as the genitals, so maybe that is part of the explanation.
The metal rod sensation in the urethra I would only get when I actually had a bladder infection.
Since you are in Australia, maybe ask around if any physical therapists use a Scenar Pro device, as it is known to help with myofascial trigger points that we can get in various areas of the body including the pelvic muscles.
Sending you positive thoughts.

[adelaidedeb]

I have looked up that dr and Dr Susan Evans seems to be the same as him. I have seen Susan Evans and I was the first person she came across with this horrible orgasmic disorder. She did say about botox and pudenal nerve block but my other dr said I had to have the muscles really relaxed otherwise it wont work. Its been over 2 yrs and seem to be worse now even though the muscles are a lot more relaxed. It is a lot better if I sit on my recliner and really relax the vulva which I have been just sitting a lot in the last few days its so boring and annoying but the only thing that helps me feel sane. Keeping really still helps. I do read a lot of girls cant sit but mine is the opposite I cant stand up long its swells there and then its unbearable pressure.

did you have to be put under for these nerve blocks as Susan Evans said that is what she does? Im so scared to go to hospital incase I wake up and its so unbearable I need to use the vibrator and you cant do that in hospital its sooooo upsetting:-( When I do orgasm when its really flared up its like im weeing acid but is a real relief and takes the acidity and pressure right down its soooo weird. Can I ask what does bladder spasms feel like, I don't think I get that? With me it feels like I have a really bad bladder infection alllll the time. I have to wait with a full bladder to make sure its safe to pee otherwise im climbing the wall 10 mins after with that orgasmic pressure again. I haven't met anyone in the 15 yrs with the same symptoms as I do. The feelings there are terrifying as no one knows whats going on and its soooo unbearable. My little girl cryed tonight as I told her well go out to the city but I don't think I can walk even 15 mins, my toes claw up as I don't know what to do with myself.

you say you have lyrica ive tried every drug and does nothing at all. I have recently completely come off endep after 2 yrs doing nothing but stuck on so much weight. Ive been to a physio that is supposed to be the best in Australia but nothing helped and cost a fortune.

[Violet M]

Weird symptom I have is I cant STAND putting my finger in my belly button it give off that horrible arousal high pitched nerve feeling and hits like a metal rod feeling in the urethra/clitoral area where this stems from. Does anyone else have this?

Well, here's what wikipedia says. Not sure how accurate wiki is but it does give some references.

"The navel is one of the many erogenous zones that has heightened sensitivity.[13] The navel and the region below when touched by the finger or the tip of the tongue result in the production of erotic sensations.[13][14] This is because the navel and the genitals have a common tissue origin, and in some people this connection still exists[dubious – discuss] so that stimulation of the navel will elicit a distinct tickle in the genitals.[15]"

Can't remember if you've tried pudendal nerve blocks. What about hypogastric plexus blocks?

Violet

[adelaidedeb]

no I haven't had any nerve blocks yet. Never heard of that other nerve block you are talking about?

[Laurina]

Hi Deb,
Sorry that all you are having a difficult time, and you have found little to offer consistent relief.
Regarding nerve blocks, my doctor did them "unguided" right in her office; she is a surgeon and knows where these nerves are supposed to be. She would first do nerve blocks in the lower back (which go more deeply into the nerves) then she would do the 2 pudendal nerve blocks. It really helped me to make progress.
I know one woman who had guided nerve blocks, but she asked if she could be awake for them; her doctor and the team of 7 other medical professionals in the room agreed, as long as she stayed perfectly still. She did not find these blocks particularly painful (nor did I) and she didn't want the hassle of waking up from anesthesia.
Before I was able to get adequate medical treatment, I found that if I had a fever or another part of my body that hurt badly, I hardly noticed the arousal sensations; so if you get nerve blocks, maybe just that bit of stinging would be enough for you not to need to relieve the symptoms further?
You say that you have difficulty with blood pooling in the area when you stand. Have you undergone investigations to see if you might benefit from radioembolization?

[adelaidedeb]

I do find if I have a migraine which im getting too many lately or have a flu the first few days it does dull it down but then after a couple of days it flares up a lot again. I can handle any other pain but this urethral arousal it terrifying I just don't know what to do with myself.

can I ask what symptoms with this arousal you had as ive never come across anyone that has the same symptoms. Also did your mri show that you had pudenal problems? My mri showed no problem there

[adelaidedeb]

radioembolization ive never heard of but looking it up its for liver cancer?