Saturday, 25 January 2014

Others' Pelvic Pain - Male Pelvic Pain and Unprovoked Vulvodynia Stories

Recently I've had the opportunity to be in communication with two strong individuals each undergoing their own pelvic pain journey.

I discovered Robert's website through a PT's twitter account. Robert has a great YouTube video: Robert's Video
And he also has started up a blog to document his successes, symptoms, treatments, etc. Along with some other individuals stories (male and female): Male Pelvic Pain

Here's Robert's story:

About 6 months ago I woke up with pelvic pain.Initially my family doctor was convinced I had an infection causing my penile ache and testicular pains. I was prescribed a 10 day course of antibiotics (doxycycline) and sent on my way. These did not help at all, about a week into the antibiotics I ended up in the Emergency Room with severe testicle pain. They did an ultrasound and found no abnormalities, the doctor in the ER prescribed my a different 10 day course of antibiotics (levoflaxin) and sent me on my way diagnosing me with a testicular infection called epididymitis.

A few months went by and I still had debilitating testicle pain and penile pain so I scheduled with a urologist, I thought that surely this would be the solution to my problem. He spent about one minute examining me, checked my prostate and my testicles only to tell me there was nothing wrong and he thought it was all in my head. He asked if I had "contacted any hookers in my area," or "Been through a recent breakup." It was a very depressing visit and I was left, again, with no answers.

I immediately sought to find the most knowledgable urologist in the city, so I scheduled an appointment with the director of urology and urological surgery at the largest hospital. We scheduled another scrotal ultrasound and a kidney ultrasound, both were normal. We scheduled a cystoscopy where the urologist uses a flexible scope to look inside my penis, all the way to my bladder. Nothing was abnormal, the surgery left the urologist telling me "I'm sorry I cannot help you."

By this time I had already came across pelvic pain and pelvic floor dysfunction on the internet as a possible cause for pain in the private area. I asked for a referral to the only pelvic floor specialist in the state and he angrily told me NO. He did not think that was my problem and he began to degrade physical therapists saying, "They are not doctors, they cannot help you." He went on to tell me, "You should not be diagnosing yourself or looking for answers on the internet." I was naked, other than a hospital gown and I had just undergone a very personal and painful procedure and he was yelling at me for requesting a referral and trying to find someone who could help. He left me in tears and prescribed me medication for men with enlarged prostate even though I had no prostate issues. I tried the medication, I got dizzy and nearly fainted each day that I took the "alpha-blockers" so I stopped after 4 days.

I then went and contacted the pelvic specialist. Based on my symptoms she told me she believed PT could help me at least some, and she has 3 male patients on her workload already. The first appointment we noted my pelvic floor muscle activity was 10 microvolts, 2 microvolts is normal. This meant my muscles were in constant spasm. Through biofeedback and trigger point release, the internal kind, my baseline has decreased on the "Chronic prostatitis/pelvic pain" scale from a 31 to 25. I've only been going for a month or so. I also found that the PT I'm going to hosts a pelvic pain support group monthly in their lobby, although I'm the only male I found the females to be very supportive and the first meeting we spent 2 hours discussing our stories. I plan on going to all the future meetings.

I hope biofeedback and internal release has benefits for anyone else suffering. Internal myofascial release has shown the most improvement in pelvic pain in all the studies I've found. I know how demoralizing and stressful all this can be. There is not a cure for these types of conditions, so striving to maintain happiness is all we can do. It's nice to see that others are making the most of their experience. Together we can fight Chronic Pelvic Pain.

The next person I spoke with was Desiree, she sought me out and we e-mail back and forth frequently. She recently started her website (Our Pelvic Pain Stories) where she is posting other pelvic pain stories (including mine and Robert's).

Here is Desiree's story:

Hello, my name is Desiree, I'm 20yrs. My pain started at 14yrs old after being prescribed birth control for premenstrual dysphoric disorder. Soon I developed yeast infections then bacterial infections. Finally after several months my doctor decided to check me again for either yeast/bacterial infections and to both of our surprise there was nothing there. She then said you have vulvodynia.......I was in shock because I've never heard of that before.I decided I needed a second opinion so I went to shands hospital and was told I needed to work through the pain however pushing through my pain makes it worse. Next was florlida hospital where I was told I had an STD which was totally insanse because I'd never had sex. Needless to say we didn't go back there. From there we went to Miami where we found a doctor who was suppose to be educated but ended up causing more damage with steroid creams. I searched for days on the computer for a doctor who could help me and finally came across an educated doctor. She did the q-tip test which was very painful which is why I found out I had vestibultis, but I also have vuvldoynia which is unprovoked pain. She was able to rule out any infections and skin conditions by taking several biopsies. After starting medications she sent me to physical therapy, I was very nervous as I was thinking how awkward this would be (I was only about 15 at the time) but she is a wonderful therapist and made me feel comfortable.....I went to her for 3 or 4 yrs and have made a lot of progress over time. The pain was still intense even with PT and meds so the next step was to try nerve blocks and trigger point injections. Those gave me a little relief but not much. Next I decided to try a neurostimulator for pain before urination....that was the worst surgery I've had, because I had to be awake for part of the surgery. I just remember sobbing and feeling pain. Once I healed, the box located in my back wasn't working properly. It shocks me and is slowly bulging out of my back so I'll be having it removed very soon. Finally after a few years of every treatment available (except won't pay) we decided to do the vestibuletomy. The surgery went perfectly, and I healed very well. The surgery did take the edge off my pain which I'm very happy for but still in terrible pain. Since then I've been continuing therapy and looking and hoping for new treatments that will be becoming available.

Please check out their websites, and if you have a story to share contact Desiree, Robert and I. We all have the same goal: To raise awareness and offer support when we can!


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