Chronic Pelvic Pain (male): My story

Hello Everyone,

I am new to this forum. My name is Gus and i am 30 years old. Since November 2010 i've been suffering from Chronic Pelvic Pain. (A little under 3 years by the time of this post).

Other than this particular pain, i am the healthiest guy in the world, but the pain itself is ruining my life, it's there 24/7 since it started, and i feel i'm too young to get my life ruined like this.

It all started one regular night while on a business trip, went to a bar to have a few beers to celebrate with my mates. Drank several beers and the bar was crowded and it had a really small bathroom. I really needed to go and the men's room line was very long. I got to the point were i felt like my bladder was going to explode but had to keep waiting in the line. When i finally got to the urinal, for some reason i couldn't pee, like my bladder was over filled and couldn't flex to let the urine out. I was tipsy and tried to force it. Looking back I think i may have hurt something at this point, i just don't know what.

Later that night the urine started coming out slowly, drop by drop.

Starting from next morning, after the whole alcohol effect was over, i could finally pee normally again, but woke up with pain in the area, and it just never went away.

If feels like a dull ache in the lower ab / bladder area. It started there and slowly extended instead of improving, after about a month it started shooting into the groins as well.

The pain is there all the time like a constant ache, but it does get more intense while i am urinating, and there is an extra discomfort during the 5-10 minutes after urinating.

Have seen tons of doctors of all areas (mostly urologists) during these three years. None of them found anything wrong with me. At this point i dropped all painkillers since they don't fix the problem and i don't like being high or having side effects.

The worst thing about this is that it also affected my sex life and relationships, since i have this it's been very difficult for me to perform, and even when i do i just don't enjoy it since i am in pain.

Just wanted to know if anyone in this forum is going through anything similar and would like to talk about it. I do feel that sometimes when patients talk with each other they can find more solutions than talking to doctors who just dismiss you.

Cheers and if someone is going through something similar, please contact me!

Post Edited (Guztavo1) : 8/21/2013 6:55:30 PM (GMT-6)

Sookie, thanks for the quick reply. Yep, Ultrasound, MRI and blood and urine tests came clean :(

Just seems to be a pain "out of nowhere" and doctors dismiss me. Guess it's something i just have to live with for now.

Thanks for the comment

Hi Vickie, thanks for your message. I did search for it and actually found a couple of threads of people with similar symptoms. But when i posted on them the moderators closed it for being "old threads". So i did a new one. Wish i could get in touch with these people but not sure if they read this.

cheers and thanks for the help.

Thanks Vickie, none of them had emails listed. But will check about newer posts.

Thanks for the support!

Guz, just a suggestion here. If you've not visited the PC forum I would certainly give them a try. Not indicating you have any prostrate involvement but when it comes to male pain and problems in those parts of the anatomy those fellows have the low down!

They are an awesome group in there and love supporting those with like problems, they welcome everyone and its a high traffic area as CP so more exposure? Possibly someone will see something we aren't?

See Guz! HW has that kind of awesomeness! We wished for someone? There is Mike to your aid. I knew when I saw him it was his description of pain that sounded so like yours.

Hopefully you two can find some answers, I'm certainly praying for that.

Hi guys,

i really appreciate everyone's support and comments. It's nice to have a community where people help each other.

@Sookie Snows: Regarding back pain. I have no back pain (luckily) in all these years, only on the front. However, i heard that some of the nerves that come from the back go to the pelvic area and can cause pain in that region. I had a MRI of the back a couple years ago and everything came out normal, no visible alterations on the back. However, i never really visited a back specialist, it's one of the things i have on my "to do" list. Thanks for suggesting it.

@bwfm: I had cistoscopy and it came out "normal", except from some mild contraction of the urethra. I have tried a few IC drugs (oxybutinin, darifenacin), with no success. If you have any other ideas of things to try, let me know, i am open to trying anything at this point.

@Mike212221 , i just added my email address, please contact me there, would be happy to hear from you.

thanks all for the support again.

Hi Lindsey, i appreciate the comments. I never heard about epidural injections on the back for pelvic pain.

Can you move around normally and pain-free or does it have some side effects?

And finally, do you know what kind of doctor i should see to have this considered?

Thank you for the info! It's really appreciated,

Post Edited (Guztavo1) : 8/25/2013 4:11:08 PM (GMT-6)

Gus,

Keep in mind you don't need to present with back pain to have pelvic problems. In fact, that's a primary region where the nerves from your low back innervate, so it might be worth seeing a neurologist since you've seen, it appears, everyone else.

Don't give up. And you are far from alone.


Sookie

Hi Gustavo,
You may want to see a urologist and ask about interstitial cystitis. Try googling it. It affects the pelvic floor region. You want to be sure that the dr treats many people with this complaint.

Good luck

I get my epidural type injections from a pain managment doctor. What they go by depends.

Hello Gus,

I am in a similar situation to you. I am 43 and my pain started only six months ago. Prior to that I was extremely healthy—very physically active & fit.

The onset of my pain occurred over a weekend in October of 2013. Discomfort in my perineum increased steadily for a few days until I was hunched over in agony. I went to a walk-in clinic and without an examination a doctor stated I had a prostate infection and prescribed me Ciprofloxacin.

Through October to December I continued the antibiotics without resolving the issue. By January my GP had stated that I had a chronic inflammation and recommended the diet changes that interstitial cystitis patients follow. I quit coffee and alcohol for a month and nothing changed that I could see through January-March 2014. In fact, maybe things got a little worse. I was missing a few days a month at work, getting depressed and very quickly losing hope.

Through early 2014 I had several manual prostate exams, once in the ER after a terrible day and at no time did any doctor feel anything unusual about my prostate and never once was there any bacteria in urine or blood tests.

about March 2014 I learned two things that changed my view on my diagnosis: 1) I saw an infectious disease doctor who believes I never had an infection. Specifically, he was annoyed that the first doctor didn’t do a prostate exam and also pointed out that a true prostate infection is a major event. I never had a fever, discharge, chills and the antibiotics were not effective. Also, I had felt the same way or worse at other times when my prostate was found to normal and no bacteria in my system 2) It happens that I keep a spreadsheet of workouts for the last few years. It happens I had a bad back injury about 10 days before the onset of my symptoms. The conclusion of these two points is that it’s less likely I have a prostate problem and more likely I have either a nerve/muscle issue that is causing my pain.

It turns out there are many theories about pelvic pain being related to muscles and nerves—in particular the book “Headache in the pelvis” suggests that people can hold tension in their pelvic floors and this can cause pain. It’s convincing that pelvic floor muscle tension can cause pain but I disliked how the authors are dogmatic that it’s necessarily “holding tension” and meditation is the only way to relieve the issue. As well, the book is essentially a promotion for a series of classes the authors hold every now and again in California. This reduced their credibility with me. A different book “Healing pelvic pain” by Amy Stein made much more sense to me. She is a pelvic floor physiotherapist. She specifically relates athletic trauma to pelvic floor issues in a way that made sense to me and recommends a series of stretches and (internal) self massages.

For a month I’ve been trying the Amy Stein stretches and I believe there’s been some improvement. I’ve had some very good days in the last month—days where if I were not now so hyper-attentive to my crotch I may not have thought anything was wrong. The bad days seem less bad than they were three months ago. I track every day in a diary to try to judge objectively if I am improving over weeks and months. It’s hard to tell because the issue has so much emotion in it. I have not done the internal (rectal) massage simply because I don’t know what to do. For the next two months, I’m going to keep doing the stretches and adding in some additional yoga too.

There was another event that made me think it was muscle/nerve rather than prostate. I love playing touch football and a few weeks ago, I thought I was feeling good enough to play again. I played a two hour game and was very sore after in the hamstrings and lower back and all the other areas that would usually be sore after two hours of stop and start sprinting. My pelvic pain was bad for a week after this and seemed to settle as my body limbered up a little.

Yesterday was the best day of the year, but today was a bit of a setback.

Gus, I’d recommend you give the stretches a try and simply see if they do anything that changes the feeling of your discomfort.

Best,
Ian

Hi Gus

My names Mal and I know just what your going through.

6 months ago I was diagnosed with chronic pain syndrome and I am only 34.

It's been 6 months of hell and I've had every test in the world that shows up nothing Mri ct scans X-rays etc.

Every day and night my pain is like yours 24/7 in the pelcic region and lower back.

I also have trouble passing urine which has resulted in having a catheter having to be put in for the last 10 weeks.

Countless doctors and urologists have seen me and can't seem to help me.

The only thing that helps me a bit is pelvic floor exercises and now my catheter is out having a bath to relax the pelvic muscles and passing urine while in the bath seems to help as much as it feels disgusting.

I'm seeing the Victorian pain specialist on the 4th of February if he can shed anymore light on this I will post you the outcome and see if it helps you also.

Regards Mal