Living with CPPS

[Niknak81]

I just recently came across 'Health Unlocked' when searching for Chronic Pelvic Pain Syndrome, and found several of the posts helpful, so thought I would share some of my experience with the community in hopes it may help others as reading some of the pots on this forum have helped me.

I am 35 and have been suffering from CPPS for the past 8 years. At first I was diagnosed with chronic non-bacterial prostates, as I am sure many of you have, but as my flare-ups became more frequent, I started to research my condition, and VERY quickly came to believe my condition had little to do with my prostate, and had everything to do with my pelvic floor.

I have had a variety of symptoms over the years, ranging from frequent urination / urgency, to a slight burn / itch when urinating, to a straining feeling in my perineum, testicles, and penis, to spasms in my perineum, to pain / extra sensitivity in my urethra when peeing, to a swollen feeling in my perineum, to tailbone pain, anal itching and swollenness - the list goes on and on. I have been to several doctors, urologists, only to get the same diagnosis - chronic prostate's. Time and time again I was prescribed antibiotics when I didn't need them, and told to monitor / change my diet, etc.

Since taking my treatment into my own hands, I have came across a tremendous amount of online resources, and experts who actually know what it is I am going through, and have real solutions for how to manage my symptoms / dysfunction. I am only now beginning to pursue many of the treatment options I have come across, but peace of mind, and an understanding that I am not alone, and am not dyeing, was the first step.

I recently came across a single website which summarized everything I had read online in one place. This website contains a wealth of knowledge on the topic of CPPS, and the author of the website, Jeff Gibson, has a ton of experience in the space, and in the treatment of CPPS.

malepelvicfloor.com.

I know there is a lot of information out there on this topic, but found this website to be extremely helpful, so I thought I would share. Hopefully you find the information as helpful as I did.

Would love to hear from others about their experience - what worked - what didn't - etc. Be well!

Nick

[jedinight]

I dont think one can call a purported therapist for free.. if that is the case, the above poster has an advertisement attached to it

[Niknak81 in reply to jedinight]

You are correct - the consultation was not free, and I was not aware I could not speak to / recommend such activities on this forum. I will remove that portion of the post and only focus on the FREE information available on the site. Just trying to help others by sharing what worked well for my personal experience. I have no professional affiliation with Jeff or his business.

[BaneBane2424]

Hey Niknak. May I ask you, how did your symptoms started, what do you think it triggered them? Have you had any infections or STD-s in the past before it all started? I suffer from this too. Do your symptoms get worse when you sit and when the weather is cold?

[Niknak81 in reply to BaneBane2424]

Hi! So my symptoms / first flare up came out of nowhere - not sure what triggered them. I have not had any infections or STDs. Sitting is actually the #1 trigger for my flare ups, so much so that I recently had to sell a car I purchased before I even made my first payment due to the seats (expensive lesson learned to take extended test drives), and I stand at work now vs. sitting all day.

I believe my symptoms are stress and occupation related (as I mentioned, I used to sit at my desk for 10 hours a day). When standing and/or moving around I don't have symptoms / and if I am dealing with a flare up, they improve with activity.

As for the root cause - can't say for sure. I have no family history of such issues, but have a theory. In my college days / some time post college I would experiment with recreational drugs - mostly uppers and MDMA - and I recall during that time, while taking the drugs, my pelvic floor would be extremely tense - as noted by the extreme difficulty I had urinating. Not sure if there is a connection or not, but perhaps my years of abuse started to ware on my pelvic floor.

I find practicing relaxation techniques, meditation, and Yoga to help - that combined with a clean and healthy diet. I plan to also reach out to a specialist in my area to do pelvic floor massage (heard great things) - if you have not heard of this I can provide a resource to you which will help you to locate a or practitioner in your area.

What type of symptoms do you experience? For how long?