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Q: Gilberts Syndrome
asked by: corn2468 on April 10th, 2009
New User
Hi,

Sorry in advance for the lengthy message, but I want to make sure I get all the details in! I am male, 31 years old, 6ft 3", always been very active through football, swimming, running and resistance training. I am a social drinker, non-smoker, non-drug user. Before my recent problems I had generally been in very good health throughout my life, I have always suffered with sinus congestion and hayfever, but that is not a real worry for me.

Basically my current symptoms are:

- Pain/irritated sensation in sacrum and leading to around to hip joints. Stiffness in hips. Slight pain leading from sacral area down buttocks to top of hamstrings.
- Frequent urge to pass stool even when I know I dont need to (tenesmus?), heavy pressure sensation on rectum. Passing stool temporarily relieves symptoms.
- Urge to urinate frequently, especially throughout the morning, feels like pressure against bladder. Urinating seems to temporarily relieve symptoms.
- IBS type symptoms - regular bloating, trapped wind, even when stomach is empty, cramps (rarely), pale stool on occassions, always have very slow digestion with mild constipation but stools seem to pass ok when I do go.
- Pain in testicle area, often as a sharp pain when a sudden movement is made. During ejaculation I feel 'tightness' in the sacral area and testicles.
- Sometimes feel like my feet are cold for no reason, when sitting?
- Gilberts syndrome - see recent medical history below.

I have been aware of the above symptoms for over a year and are worse when I am sitting. I work in an office so as you can imagine I find it very difficult some days to concentrate on anything other than the pain and discomfort! Standing is slightly easier, I am most comfortable when lying on my front, which is not how I want to live! Exercise seems to relieve the symptoms temporarily, and relax the sacral area and hips - especially when swimming.

The doctors say they cannot find anything wrong with me internally anymore (see below for my recent medical history) but I am in quite a bit of pain more often than not and its driving me mad, it has got to the point where I dont want to socialise because I just feel so uncomfortable and in pain, it is very distressing and embarrassing.

Aside from regularly visiting my GP, GU clinic, and a very unconcerned gastroentologist, I have also been to have acupuncture, seen an osteopath and a massage therapist regulary. The hands on approach has provided temporary relief for a day or so but no-one has got to the root of the problem. I have been told I have a lot of muscle tension in my hip and sacral area, and am doing specific stretches everyday to help with that, along with pelvic floor exercises. I am also waiting to see a chiropractor and a rheumotologist.

Is it possible that I have trapped nerves in the sacral area that are causing the symptoms I currrently have? Or is it something more sinister like a herniated disc? What action should I take and can it be resolved?! Please can someone advise me on what to do as I am running out of ideas, I don't want to keep living like this!! Thanks.

MEDICAL HISTORY 2006 - PRESENT

At the end of 2006 I visited the doctor, after a few visits of explaining my symptoms I was eventually (after a couple months!) diagnosed with Reiters syndrome (autoimmune illness). I was experiencing urinary discomfort and high frequency (infection) and painful ejaculation, with low volume, watery semen. I had an inflamed prostate, was constantly tired and had severe conjunctivitis. All of these symptoms occurred within a few months of each other and continued throughout 2007. By the end of the year I was making progress physically but still seemed to be having continuing problems on a milder scale. I also suffered depression after work problems and relationship issues so was put on antidepressants for a few months at the start of 2008. I was mainly taking Doxycycline for the Reiters but I cannot remember the name of any other meds now!

At the start of 2008, I came out of the depression and noticed my lower back area was aching a lot and my bowel movements had also become strained and was constantly bloated with pale stools. Thinking back I may have had this for longer than I realised but other symptoms seemed to overshadow this. Exercise seemed to relieve the symptoms so I continued exercising to help, but it would always return quickly. I just put it down to the Reiters and put up with it as I believed it would clear in time as this is what I had been told.

During my blood tests in 2008 I was told I also have Gilberts syndrome and was told it is nothing to worry about. But apparently (after my own research) it is a liver disorder, and may contribute towards my ibs symptoms as it affects digestion, also I seem to feel tired more than I should with spells of lacking concentration, this could also be influenced by Gilberts! This is hereditory so I have always had it but maybe the Reiters illness has made it worse?
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