Health Organization for Pudendal Education

HI. I am new here and have read so much. I don't know for sure if I have this condition or not, but I have a lot of the symptoms and my urologist keeps giving me injections into the pudenal nerve. He thinks scar tissue has formed and is putting pressure on the nerves in the pelvic region. I am not sure. This all started after a series of 3 falls... Seems I could be clumsy!

I have PGAD (which is an unbearable sensation in the genitals that makes you feel like you are constantly sexually aroused or on the verge of an orgasm.) It is very hard and embarrassing to talk about. So, I share this in hopes of getting some answers and maybe help with this.

I have been recently diagnosed with Tarlov Cysts also, which one doctor thinks may be causing a lot of the symptoms.

I have severe pain in my back and pelvic region when sitting. I have the sexual sensations, with absolutely NO desire for sex, I have a contraction like feeling in my lower stomach, right below the belly button that is also painful when touched. I have pain in my buttocks, especially toward the inside of them when walking, lying down or sitting. I do not have pain while walking very fast. I have a lot pain when standing. I have pain lying down, but after I have managed to knock myself out at night, I wake up pain free until I start to do something. The arousal feelings are non stop, no matter what I do.

I have no pain when lying in a pool on a float and I have no pain when sitting on the toilet.. which I think is weird. My feet and legs hurt all the time and the bottom of my feet hurt when walking or standing (I don't have pelvic or back pain when walking very fast, but I can only do that for a short time each day.

So, with this information, I would like to know what people think. I am going to read more on the forum. Thanks for listening. God bless all.. Sheatina

I wonder if you could describe the type of pain you have Sheatina? as nerve pain can come in strange guises. You can find some excellent and concise information about PN on the home pages here btw. http://www.pudendalhope.org/node/9
Because nerve pain is so different to other aches and pains I would say it is difficult NOT to be able to diagnose it. Unfortunately that's not everyone's experience (including mine) Then the question is which nerve.
Because you describe PGAD, and relief from sitting on a toilet seat your problem could well be with the pudendal nerve. However some people do find that because the pelvis is interacting with so many separate structures; ligaments, organs, muscles and nerves a more complex problem can escalate involving more than one nerve.
I have a piriformis problem and related PN because of a fall too, just a stupid trip and subsequent crash down onto my bum because I was heading towards a jutting corner wall and was vainly worried about my teeth and nose (of course they would be fixed by now. . . HUFF!) Do you have any pain where the piriformis muscle is at all?
Where are you situated? there is also a ton of good (ever expanding) info on the home pages about doctors who are PN aware as well as those who can diagnose and treat.
Looking forward to hearing how you get on from now, I'm sure that you will find great support here which can only help with any ongoing problems.
good luck
Helen

Hi Shetina
I am also very new here too...but this site has a wealth of information and some wonderful caring people who really know how you feel So your in great company.
I hope you find some peace as i have knowing your not alone.

Best wishes
Belle

I have suffered from PGAD in the past and I think it's the worse symptom there is.

Use lots of ice. You can fill a condom with 1/3 part alcohol and 2/3 part water. Tie off and freeze. It then becomes slushy and fits right where you need it to.

Welcome to our group.

cari

Sheatina, I have had many of the same symptoms you are describing including PGAD 24/7 no matter what I did. Please keep fighting because there is a possibility you could be mostly cured from this as I am.

Since your problems seem to have started after a series of falls, it seems like it would be a good idea for you to have an evaluation by a physical therapist who can diagnose whether you have a pelvic misalignment or sacroiliac joint dysfunction. If your pelvis is out of alignment, it's possible your ligaments or other structures are pressing on the pudendal nerve. If you go to someone on our list of PT's who treat pudendal neuralgia, they may be able to assist in the diagnosis of whether you have pudendal nerve involvement. If it turns out that your pudendal nerve is not the culprit and it seems to be the tarlov cysts instead, there's a gal on the forum, HerMajesty, who knows the best tarlov cyst docs to go to.

Take care,

Violet M

Hi Sheatina,

I had very similar symptoms and all my issues were from tarlov cysts S2-S4.
search my past posts for my story,

I am recovering nicely.
best wishes
Yoland

Yoland, did you have PGAD (the feelings of sexual arousal without desire) too? Just wondering if tarlov cysts can be the cause of that problem and if tarlov cyst surgery can cure it. I don't have that problem anymore but I know people who do who are still searching for answers.