Health Organization for Pudendal Education

Hello everyone,

My name is Joe and i am 23 years old and have been dealing with chronic pelvic pain for the last 3 years. First i will just give my symptoms and then i will go into detail. And then i am going to vent, since NO ONE understands what i am going through. Have been suicidal on more than one occasion over the last year, and am growing tired of No one believing me.........

Burning sensation in the buttcheeks when sitting
Lower back pain
Painful ejaculation
weak erections(For the first time ever this month, wasn't able to get an erection at all) Tried viagra and was able to have sex no problem, so it IS working at least with a kickstart that is
Urine retention
Painful Urination
Feeling like something is in my rectum, golfball
Trigger points in rectum
Weird sexual arousal for no reason, when penis touches my underwear feels like i am being stimulated (Newest and most annoying symptom)

I don't have terrible pain like most people describe on here, i can deal with pain, it's all these other problems that are more annoying than anything, especially toppled on each other.
ANd not to sound like a perve, but if my erections functioned normally i would be okay with living with this, but this symptom has caused so much emmotional damage, i sometimes wonder if theres hope.

I have had
Physical therapy
a myriad of medications(Just made things worse)
Ultrasounds
MRI and XRAY of spine
Prostate exams(minor inflammation, which i thought was weird since i am 23, but urologist blew me off)
Prostate ultrasound

I am trying now to get a 3t MRI at MGH where i work. I guess they do them here now. Hoping to get some kind of answer of what the hell is going on.

Overall i used to be very healthy, but within these 3 years i have also developed Fibromyalgia/CFS symptoms which my mother has as well. Also another important note, my mother also has Lyme disease.
Not sure which caused which at this point, but i had pelvic symptoms way before anything.

i DID have two inguinal hernias when i was 8 years old, and i am wondering if this could have anything to do with it, i also sit 8 hours a day in my office. So those are the only two things i can think of to cause this. No injuries that i am aware of.

My gait is also off and i have one leg a bit longer than the other, and minor scoliosis in the lumbar section, but my ortho said this was normal.

I am so lost as to where to go next. I am terrified of surgery and the nerve blocks, and they seem like they don't work anyway.

I am going for more physical therapy, changing my desk so i can stand rather than sit, and getting an MRI and XRAY of pelvis, if none of this works i don't even know where to turn next.

Well i just wanted to introduce myself, and explain my history. I hope all of you find relief of this nightmare, sometimes i feel like theres hope and other times i just want to give up.......

At least before i could have sex, now that's even being affected...............

Hi Joe,

Sorry to hear you are going through this.

Not sure what meds or what type of PT you have tried --- was it someone trained in treating pudendal neuralgia? If your alignment is off you might want to check into seeing a manual therapist. You could contact Jerry Hesch to see if he knows a good one in your area. He's listed under Nevada in the PT list on the homepage at pudendalhope.org. Lower back pain could mean some sacroiliac joint involvement and a manual therapist might be best able to deal with this. SIJ dysfunction is not uncommon with pudendal neuralgia. I had it and experienced some similar symptoms to what you are describing (only female)

Often pudendal neuralgia is triggered by a combination of things that eventually add up to causing symptoms -- not always just one thing.

When you get the 3T MRI see if your radiologist can get the settings protocol form Dr. Hollis Potter in NYC. She is listed in the physician section on pudendalhop.org.

Since you're not too far from Dr. Conway you might want to go to him for a proper diagnosis. He will believe you. Keep in mind he is a surgeon though and surgery is pretty much a last resort in the treatment of pudendal neuralgia. Most people start with the least invasive therapies to see if they help and also go through extensive diagnostics to rule out all other causes before settling on a PN diagnosis.

Also, check out the newsletter on persistent genital arousal disorder that can be accessed from the homepage at pudendalhope.org.

Please try to hang on because you still have a lot of options and at your age a very good chance to get better. There was a time I did not want to live but now I have a great life and I'm so glad I hung around and kept fighting until I found something that worked.

Take care,

Violet

thank you

i appreciate all the information.

I tried reading up on PGAD but it seems theres only information for women.

This has become my worst symptom, my penis head is so sensitive, i can barely walk because my underwear irritates it like crazy. It's like a constant sexual feeling......i got this before but it left within a few hours. It's been 3 days now and no sign of letting up.

I am wondering what could have caused it, i tried 2 new things right before i got it, i started exercising again, and i tried viagra, but i doubt viagra would do this? In fact i read because it opens the blood vessels it sometimes helps with PN and PNE.

Are there any men on here, that have gotten this sexual arousal feeling? I tried masturbating but it only made things worse, and i couldn't even get a full erection.

It seems everytime i get okay with my pain and accept it, something new happens, some new symptom

Here is a link to an article about a study of PGAD in men. http://www.psas.nl/artikelen/mannen.pdf
Maybe you will find it helpful. It seems that PGAD is also called Restless Genital Syndrome.

Hi Joe,
I'm so sorry you are having this to deal with at an age when you should be running around carefree and healthy. Yes this condition can stop you in your tracks from enjoying life and we have ALL been pushed to our emotional and psychological limits many times having to deal with this condition. But SOMETHING always helps us through. You will find that something too every time you are pushed to despair by your symptoms. I'm glad you can get an MRI arranged through your work. Surprised your Ortho did NOT see the relevance of your leg length discrepancy, gait and lumbar signs. mmm....maybe worth taking that information to a better 'body mechanic'. whether that's a good osteopath/chiropractor/physiotherapist etc!! I hope some of the guys here chime in soon to give you some help and info. in the meantime, there is some good informative literature on this site to get stuck into. Also you do have youth on your side and in terms of getting your body to recover that is a big plus. You are doing all you can do to resolve this for yourself - keep going - you will get there.
Take Care
Jos

"The world is full of suffering. But the world is also full of the overcoming of it"[/i]Helen Keller

Joe, PGAD is not just in females. We've had males post on the forum who have it. Exercising could indeed flare it up, especially if the nerves are being irritated by a compression or entrapment. The good news is that if yours is caused by a mechanical musculoskeletal anomaly it could be fixable if you can find the right treatment. There are medications such as SSRI antidepressants that might dampen the symptoms in the meantime.

Violet

Out of interest, why do ssri's help this condition?

Hi Joe,

I'm a bit too new to this condition to give you much advice! But the symptoms you describe are pretty much what I have had to endure, with only a couple of exceptions. Some have eased a little or fluctuated. I thought I was going bonkers and if I was 18 feeling like a rabbit in a harem then that might not be a bad thing Lol............but actually it's not and it's not that simple as you know.

My advice is firstly you need to see a good chiropractor ASAP who can check your alignment, your leg length which should be equal and adjust your sacral iliac joints back into alignment. I have suffered with the pain and muscle spasm that an out of place SIJ can cause in the past. It is not good!
After they or it has been adjusted it may need to be done again as the muscles will be in spasm and can undo it. Muscle relaxants might help. But specific stretching exercises will need to be done. It will take time and patience!

Hope that helps.

Roger

joeparz wrote:thank you

i appreciate all the information.

I tried reading up on PGAD but it seems theres only information for women.

This has become my worst symptom, my penis head is so sensitive, i can barely walk because my underwear irritates it like crazy. It's like a constant sexual feeling......i got this before but it left within a few hours. It's been 3 days now and no sign of letting up.

I am wondering what could have caused it, i tried 2 new things right before i got it, i started exercising again, and i tried viagra, but i doubt viagra would do this? In fact i read because it opens the blood vessels it sometimes helps with PN and PNE.

Are there any men on here, that have gotten this sexual arousal feeling? I tried masturbating but it only made things worse, and i couldn't even get a full erection.

It seems everytime i get okay with my pain and accept it, something new happens, some new symptom

Joe, I am thinking PGAD is not a woman thing. I am male and I have been suffering with this too, it drove me nuts for over 20 years and after living with embarrasment and guilt for a long time, I found out the reason only a few years ago. I do not have the severe form of PGAD as described by some others on this list - but I have it nearly every day and usually for a few hours every day ( only rarely it is all day long). Bowel motion almost always causes an intrusive arousal for me ( with minor shock like sensations) and so does constipation. It is triggered by sitting and also by laying on my back, so also by any kind of exertion like walking. Hot weather and cold weather, as well as heavy rain triggers it. Clothes disturb me at times, but it is not a routine problem for me. Sleeping is a frequent problem at night.