Health Organization for Pudendal Education

Well, I worried about that before I had a diagnosis and especially when my neurologist suggested that I see a psychiatrist, but now that I'm essentially cured from PGAD, it's obvious that it wasn't in my head. Also, after communicating with a number of different physicians on the topic, they have confirmed that PGAD seems to be associated with pudendal neuralgia in many cases.

Violet

Having a bad day with pgad symptoms. I've gone back to physical therapy after feeling good for about a year or so. My symptoms returned about a month and a half ago and I started PT again a few weeks ago.
This is embarrassing, but does anyone get the feeling they're having mini orgasms? I hate dealing with this:(

Has anyone found weight loss made their symptoms go away? It sounds like the next step for me is nerve blocks but I'm kinda scared to do that and am thinking of natural ways to help before I go down that route. I'm probably about 50 pounds overweight.

Krl410 wrote: This is embarrassing, but does anyone get the feeling they're having mini orgasms? I hate dealing with this:(

Yes. It was kind of like a shock down the course of the pudendal nerve that caused a muscle contraction. Used to wake me up at night. I completely agree with you that it's difficult to deal with.

I don't know how being overweight would be related -- maybe by causing extra stress on your musculoskeletal system -- ligaments, muscles, nerves, etc.

Violet

Hi Krl, sorry you feel bad again.

Where do you feel your symptoms?

Also Violet, what were your symptoms? Did you have sleep orgasms?

Without going into my exact symptoms, let me just say in general that sleep orgasms that resolve and are not painful occur in healthy people. Sleep orgasms that are painful and where the feeling of arousal continues would not be normal and would be associated with PGAD and possible nerve pathology.

Violet

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.

Hi everyone !

It's been a few weeks since i've posted. Just wanted to update and everything is back to normal. I really think it was linked to my IC because I only have the symptoms when I eat/drink my trigger food (spicy, soft drinks). Hope everyone is going well.

Ally

Thanks for the update, Ally. Hopefully ice cream isn't one of your trigger foods.

Violet

Violet M wrote:Thanks for the update, Ally. Hopefully ice cream isn't one of your trigger foods.

Violet

Excellent advice!

Hi, I posted a few weeks back & I wanted to leave some positivity.
I am no longer pregnant, unfortunately however I am now on 600mg pregabalin & 50mg amitriptyline.. I am wanting to wean off.. I have been in treatment with a professor who looked at my urine under a telescope & he said I had a embedded UTI.. & this was not IC - I am now on treatment for that & my pgad is seriously reduced.
I am almost myself again.
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