Health Organization for Pudendal Education

Someone asked about this on the old site and I didn't know what they were so I didn't respond. I have had both all my life. I was born with PN so I didn't know I was broken in this way until after surgery.

Sexual disfunction = I had pain with arousal, the outside wall of my vagina (that was removed with surgery) would always burn and the head of the penis felt like a knife and the head of the penis always felt like it was hitting a brick wall. This was all due to sexual disfuction caused by my PN. My pelvic floor did not allow my insides to stretch or move. My PT says this is fixable.

Hyper arousal = I always seemed to be turned on vaginally (my internal and outer vagina was always so sensitive to air and everything else). My body and head would not be turned on though. I would orgasm and that never released the vaginal pressure (that feeling you get when you are turned on or are about to orgasm). Surgery fixed this problem. My vagina only gets tuned on when it is supposed to now.

I'm not sure if this is helpful to anyone, but I had no idea I had these two problems until after surgery. I hope this helps you understand what your body may be doing and give you some hope that you can heal.

I will answer questions and keep you posted on how PT helps with these issues if you're interessted.

Kathy

Kathy, I am glad to hear that surgery has given you improvement in these areas. It's hard to imagine living with PN all of your life. Whenever I feel like complaining I need to remember people like you who have suffered much longer than I have.

I wish you continued healing.

Does the hyper arousal get worse for anyone if their bladder is full?
I don't actually have orgasms with out more stimulation, but I always seem to have this 'squirmy' feeling.
It's driving me INSANE!
Thanks
I wish I had some one to talk to here where I live.
It feels so lonely...
My docs, and my husband, and my friends are being supernice, but...
thanks for listening

SC, it's been 6 years since my surgery so I can't remember for sure. You know, it's really hard for me to discuss this subject because it is very private but I do it because I remember how desperate I was at the time feeling like I was the only "freak" in the world with this problem. So I am here because I don't want other people to feel like they are alone and that this is a medical condition and not a psychiatric condition that's all in their head.

I remember that lying down was the worst position and it was almost impossible to sleep -- I barely slept for months until my docs finally consented to some medications. Also, after BM's was awful because the muscles would spasm. I used to get up many times in the night to use the bathroom so in answer to your question about a full bladder -- if I remember correctly, emptying the bladder was a relief. But I agree, the feeling is enough to drive you insane because you can't concentrate on anything and it takes all of the joy out of life.

11 weeks after surgery and I no longer have sexual dysfunction or hyper arousal.
My parts are as sensitive as they should be and there is no pain with arousal or climax anymore.
PT is working on scare tissue and 4 of the five joints in my pelvis that were not aligned.
I have no strength yet, but the burning is gone and I'm slowly getting off pain meds and switching to anti-inflammatories and tons of Bengay and massage.
My muscles are learning what the new norm is my body has been like this since birth, so my muscles ache and that keeps me awake at night.
As anyone with PN knows, muscle pain is nothing compared to PN pain so I am so excited and pray that the burning stays gone.

Good luck to you all

Kathy

Kathy,

I find it incredible that you've had to live with this pain all your life. I'm so happy to hear that the burning inside has stopped. I too felt relief from this burning sensation about 3 months after surgery. After a while it came and went, up and down but overall it seemed to be much more calm after surgery. The rectal pain too was much easier to deal with after surgery. I used to shake, perspire and sob my heart out after each bowel movement but felt so much better after surgery. My main pain is still in the perineum and with sitting.

You are an amazing woman to fight this all these years. I wish you the very best with your recovery. It's people like you Kathy who are such an inspiration to others.

Catherine

I just remembered, when I first started having the hyper arousal I would stop at a gas station and buy a bottle of something to drink. Placing that between my legs as I drove gave me some relief.
Just a thought

Kathy

Kat thanks so much for sharing as this has been driving me crazy - I don't think my problem has been as bad as yours and I am so glad to hear you are better!

I've had two nerve blocks so far and an epidural for diagnostic purposes - turns out Ihave a ruptured disc at L4 on the left just to add to the fun - and all of my sensations are on the left

the two blocks were ay s2 and s3
the epidural at l4

the block at s2 caused more problems with pain

the block at s3 gave me huge relief

the epidural was only 2 days ago and was painful and seems to be irritating things

my anesthesiologist wants to test all possible nerve involvement

my internist realises I may have to go out of town to gain help and relief

these two docs are the 1st to listen and provide any help

and an ER doc who is a friend also told me that there is a liver enzyme (cytochrome) that occurs in 7% of caucasians and can cause eccessive or slow metabolism of pain meds - it's hereditary for both - my mom and sister are slow metabolizers and I appear to be a rapid metabolizer

My internist is doing everything he can to relieve my pain - and is not afraid to do so

my pelvic floor has prolapsed after being repaired once

and I have a rectocele and a rectal prolapse

the bladdar repair I had seems to be holding

I did not have a hysterectomy

I had popped the ligament holding up my uterus and they put them backk in place

the worry is that the ligaments have not held

and there is now pressure on the bladder and vagina and rectum from the uturus prolapsing again

I have back pain

more like bone pain at the opening of my pelvis on the left side and the strange arousal side effects, plus the sensation of a constantly full bladder

my symptoms except the back pain had been in remission for a while until I started havin rectal problems and had a colonoscopy which stirred everything up

using my whole hand to put direct pressure on my clitoris vaginal opening and pubic bone will help with the sexual arousal feelings as will topical lidocaine 5%

MY BACK PAIN IS UNBEARABLE RIDING IN THE CAR, but I think this is the disc.

any thoughts... I am in SC and do not have medical insurance right now, but have an arrangement with the hospital here for free treatment as well as having free treatment from many physicians as they are longtime friends of my family full of docs...many are willing to learn all they can about PN and have been reading every article I have emailed them

my anesthesigist already knew much about it as did the neurologist who did my MRNs

SC, have you ever been evaluated for pelvic instability with ligament laxity? Just wondering because I have major problems with ligament laxity due to what my gyn thinks is a genetic collagen deficiency -- there is literature to back up her theory. With all of your prolapses it seems there is a good chance you have some ligament issues going on. That can sometimes be a contributing factor for people with PN -- it certainly was in my case.

OK more info
Ligaments are in place
Hysterectomy has been unadvised as uterus is actually providing more support to other pelvic organs.
Our medical school/center has managed to woo an international colorectal surgeon whose last posting was in RI.
He uses the Da Vinci for Robotic surgery for all rectal repairs and knew MORE than i did about pelvic neuropathy.
I told him I hoped had been playing video games his whole life!
The second nerve root block with anesesthetic and steriod between L3 and L4 took away ALL neuropathy symptoms
It is beginning to wear off and they are returning
I have ditched All pain meds to see
Except the occassional Tylenol with codiene
My mother had a congenital defect with her colon /sigmoid colon - there is no real way to tell if I am in the same boat until he gets in there, but the rectocele could be a non issue if he repairs the rectum/colon/sigmoid colon poperly.
As my response to the blocks seems to be favorable, I think we are on the right track, although, I would like to have a GYN surgeon in the OR to shore up uturo sacral ligaments if neccessary.
So looks like goal is to repair rectal prolapse and treat nerve issues with blocks as vaginal prolapse is not as bad as we thought and bladder is holding, sensation of fullness is nerve related/and bothered as well by rectal issues.
The VERY minimally invasive surgery with a surgeon mindful of the issues should be helpful.
My anesthesiologist will be present as well.
They have all conference called with my Internest.
Hope this will do it.