Desperate for insight and guidance

[Cade]

A lot of this is pretty humiliating to talk about but I feel I have nowhere to turn.

For the past 9 years of my life (since I was 15) I was on Effexor. I went off it in late February and my libido came back. Since I never really had much of a sex drive as a result of being on it since early adolescence, I had never really ejaculated much until this year, when my libido went crazy. A week or so later I started having perineal pain and it has been there for five months. It is worst after ejaculation - my pelvic area feels numb for about an hour and then a burning, swollen sensation takes root days, even while just laying down. I eventually stopped doing it when I figured out it was causing the pain, but it still happens in my sleep every few days, with the same result - pain for a few days, starts to feel better, then happens again. I recently got an SSRI prescription to try to lower my libido to help with this.

Normally, the pain isn't there while laying down, but other things can trigger it as well. Sitting (makes working difficult), walking/standing for more than a few minutes, and while I don't normally have issues with urinating or bowel movements, if I have more than one bowel movement a day sometimes my pelvic muscles will spasm (rapid repeated contractions) and I will have a flare up later on.

It hurts when I contract my pelvic muscles (feels swollen and painful when I squeeze to stop urinating). When I relax my pelvic muscles it feels like there's a foreign object or lump in the rectal/perineal area, or like a balloon is expanding against my perineum.

I also have periodic testicular pain (as well as above the groin and joints between the thigh and groin) that seems to come and go.

I also get this weird oversensitivity in my genitals that causes pelvic contractions with the slightest friction, even without arousal.

At random I get twitches/spasms that occur in my pelvic area and penis for a few seconds, and while they don't hurt, are very unsettling.

In April I was prescribed two different antibiotics because the doctors thought it might be an infection, didn't work. They referred me to urologist, but when I saw him he wouldn't even let me finish talking/describing my symptoms. He just told me I was constipated even though I said I wasn't and shoved me out the door with a miralax prescription.

The only thing that's helped is laying down all day and ibuprofen. I've probably taken way more ibuprofen than is good for me in the last five months, and I feel imprisoned to my bed because I can't be up for very long. I used to love walking. I get depressed and anxious a lot because it all seems so hopeless. I don't know if I can live like this for the rest of my life. All the treatments seem to be high-risk low-reward.

Now I just don't know what to do as far as seeking treatment goes. Non-specialist doctors obviously aren't really equipped to help me and the specialist I saw (and am scheduled to see again) didn't seem to care at all. I don't know where to go or what to do. Should I try to get the urologist to listen to me when I see him again or should I try to see another one?

Also, do you think it sounds like what I have is PN or PNE? I have all but a few of the symptoms (I don't really have pain while urinating or passing bowel movements, and it doesn't irritate me to bend over.). If not, what else could it possibly be? I feel so in the dark about all this. Thanks.

[Violet M]

Hi Cade,

I understand the feelings of humiliation. I think many of us have been there also which is unfortunate but it's reality. My thoughts on the doctor who told you it was constipation and shoved you out the door is that there may not be any point in returning to him if he got it that wrong the first time -- unless you would need to see him to get a referral to a pelvic floor PT. But you might be able to ask for that over the phone -- just tell the nurse the miralax isn't helping and request a referral to a PT. If you can find a physical therapist near you who specializes in pelvic pain and is knowledgeable about pudendal neuralgia, you might get some valuable information as to whether your pelvic floor is overly tight and contracted, and if they press along the course of the pudendal nerve at the ischial spine and at Alcock's canal, whether you have tenderness along the pudendal nerve.

While I can't say for sure if you have PN or PNE, your symptoms are certainly in the distribution of the pudendal nerve area so it would make sense to at least suspect it and have it ruled out. I had some of the same symptoms you are describing with pelvic contractions waking me up at night and causing a flare-up the next day.

I wouldn't say all of the treatments are high risk or low reward. There are many people who get better and move on with their lives. I don't know of many people who have had problems from PT so that might be a good place to start with treatment.

Violet

[Cade]

Hi Cade,

I understand the feelings of humiliation. I think many of us have been there also which is unfortunate but it's reality. My thoughts on the doctor who told you it was constipation and shoved you out the door is that there may not be any point in returning to him if he got it that wrong the first time -- unless you would need to see him to get a referral to a pelvic floor PT. But you might be able to ask for that over the phone -- just tell the nurse the miralax isn't helping and request a referral to a PT. If you can find a physical therapist near you who specializes in pelvic pain and is knowledgeable about pudendal neuralgia, you might get some valuable information as to whether your pelvic floor is overly tight and contracted, and if they press along the course of the pudendal nerve at the ischial spine and at Alcock's canal, whether you have tenderness along the pudendal nerve.

While I can't say for sure if you have PN or PNE, your symptoms are certainly in the distribution of the pudendal nerve area so it would make sense to at least suspect it and have it ruled out. I had some of the same symptoms you are describing with pelvic contractions waking me up at night and causing a flare-up the next day.

I wouldn't say all of the treatments are high risk or low reward. There are many people who get better and move on with their lives. I don't know of many people who have had problems from PT so that might be a good place to start with treatment.

Violet

Thank you for your insight.

Looking at the list of PT's on the site, I don't live anywhere near any of them (I live in Kentucky), so I'd have to travel pretty far just to meet with them. Is that normal to have to do?

[Violet M]

That list is not all-inclusive so there might be one near you who isn't on the list. It might take some research on your part -- making calls to the PT's in town. If you have a university hospital, check with their urology departments. Sometimes urogynecologists work with PT's who treat women and men so you could even call the urogyn's in town.

You could also call the PT's in KY on the list and see if they know someone in your town.

[Cade]

http://www.pelvicfloorandcore.com/Puden ... algia.html

This is only an hour away from me and they treat PN. Has anyone here had success with these people?

[george]

Hi Cade,

We seem to have extremely similar symptoms, though I am able to walk for a decent period of time. I’m also not in a tremendous amount of pain so much that I have lots of tingling and muscle spasms. I’ll be 23 next week and I know how depressing and mentally exhausting it’s been since I’ve had this for 4 months and I’m petrified at the idea I’ll have it for a long time. The only thing I’ve found to help is to let hot water run under where the perineum is when I take a a shower for a few minutes every night. Have you tried this?