I have found success via a rollercoaster ride

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Gav
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Joined: Sun Jan 21, 2007 6:23 pm
Location: London, UK

I have found success via a rollercoaster ride

Post by Gav »

Well, I’ve not posted here for nearly two years. Things got out of control and a bit mad. I now have my chronic prostatitis / chronic pelvic pain syndrome (amongst other things) under control and wish to tell my story.

Let me refresh you all…..I started having problems after an incident with a kidney stone and a ureteroscopy about 2 and a half years ago. Went through the initial antibiotics, with no help but did notice a difference with internal massage (using a prostate massager). At the time I thought this was because I was working directly on the prostate as I was sceptical about it being a muscle issue, but how wrong I was. :sad:

But alongside all this I was also practising stretches from the Headache in the Pelvis Book and taking tamsulosin (Flomax).

Anyway, unfortunately my already diagnosed (from 2003) Ulcerative Colitis then kicked in with a big and bad flare which saw me hospitalized for over a month where I ended up suffering toxic megacolon and having a resulting ileostomy (not too dissimilar from a colostomy). I was pretty much at rock bottom at this point. I was put on Elavil (25mg a day) for a few weeks my post op pains and all my pelvic pains disappeared. As a result of the ileostomy only 6 inches of disused colon remained in the rectum (I was too weak to have these removed at the time of the operation). This was giving me immense pain and yet again my pelvic pains started up. At this point I had quit the Elavil, but it a few weeks before the pain started again. :62_58_40:

After some rather lovely examination of the 6 inches of rectal stump left (the remaining part of my colon) I was told it was too dangerous to leave it as the chances of developing cancer there were far too great, so there was another major op to remove this and essentially have my butt sewn up! Of course I worried immensely about what this would mean for my pelvic floor muscles, especially with no possibility for internal massages after the Op, but I knew from a fellow sufferer of UC that it was bad to keep any rectal stump in for a long time as he had passed away from the cancer that it had brought him after he kept it in for a prolonged time attempting to avoid another major surgery.

The Op came and went and I ended up with some quite nasty pelvic pains once more. To add to all this, my girlfriend had become such a stress on my life as she felt like I had put her life on hold with my illness that I had to part ways with her for my own sanity (and hers).

My Urologist and my Gastro had long since washed their hands of me regarding the pelvic pain, but I had remembered how well the Elavil had worked with all my pain so went to my family doctor and he agreed I should try 30mg of the stuff each day. During all of this time I had been taking tamsulosin still. The Elavil had a decent effect after a few weeks but I was not 100%. It was only when I came off the tamsulosin that pelvic pains then disappeared completely. I have worked my way down to 10mg of Elavil a day and am now taking it every other day. :-D

I have also re-entered the world of the working, now working back in IT, this time for a major bank in the city area in London and have a new girlfriend who doesn’t care at all that I have a pouch on my abdomen where my stool flows out, in fact she has done her best to get to understand the ins and outs of it all. Throughout all of this that has been just a minor inconvenience.

I look back at the last 2 years, I am sure that the pelvic floor dysfunction I have suffered was due to my Ulcerative Colitis and the kidney stone incident that possibly triggered the Pelvic Myoneuropathy.

And Kudos should go to webslave, who actually said this to me on the spot when I first registered. All the “prostate massages” I had done two years ago had simply relaxed my levator ani muscle (I think that’s the one or two???) resulting in a symptom free time for a while.

I hope that with time, stretching and a much more chilled out life that I lead now I can eventually come off the 10mg of amitriptyline that I take every other day as well, but it’s a small price to pay for how I feel now, compared to the stressed out, unhealthy painful existence I had after my chronic prostatitis / chronic pelvic pain syndrome kicked off.

One last thing, I can’t remember who it was, but someone on here also posted (or had it in their signature) that the yoga pigeon pose was an excellent stretch for rectal pain. This particular stance helped a lot when I started on the Elavil. Thanks so much for that whoever it is that put that in.

This forum has an immense amount of experience and intelligence and a great amount of guidance. When I first joined I didn’t realise this. I am indebted to you all.

I have found peace, and it feels great to be able to get out there and live rather than just survive.

Thanks all. :-D

Gav
Age: 41 | Onset Age: 30 Symptoms Initially: Urine frequency, Rectal Pain, Bladder Pain, Penile Pain, Numb Inner Thigh Pain, Constipation, Fever. Symptoms now: None | Helped By: Resolution of phimosis /Elavil, Stretches. Worsened By: Stress Stress Stress!
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carld
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Re: I have found success via a rollercoaster ride

Post by carld »

Gav...This is wonderful news my friend....Thank you for stopping by and posting your success.

Lighting Tree was the one who talked about the pigeon pose and yes it's a fantastic stretch...

Be well and stop by from time to time to say hi... :-D

Best, Carl...
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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