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Pelvic pain for 2+ years...please help!

Posted , 2 users are following.

paul_b
paul_b

Hi,

I've had chronic pelvic pain for over two years now and am very worried about it. It started one day at work when I kept going to the toilet to pee. There was a burning sensation and a lack of force when I tried to push to empty my bladder. Also, pain across the whole of my pelvis - especially the right-side.

I went to A&E a few days later and they said that I had suspected epididymitis, although they weren't sure. Took a course of antibiotics that they prescribed but the pelvic pain that I was experiencing wouldn't go away. Then had two ultrasounds on my testicles - both clear. My GP then said that he thought I had a hernia. I asked him if he was sure and for some reason he got annoyed. He told me that he'd been a GP for twenty years and that he was convinced that I had a right-side inguinal hernia. Was put on the waiting list for an operation and eight months later (in December 2012) had a laparoscopy (I think that's the term for it!). No hernia found. Then had a CT scan - again, clear.

Pain has intensified over the course of the past three weeks and last week I was getting up to pee lots of time during the night. My GP said that the PSA blood test I had last year was fine: reading of 0.3.

Having another blood test next week to double-check levels for prostate problems. Have pain after intercourse and sometimes have a dry ejaculation i.e., no fluid comes out even though I get the sensation of having ejaculated. The pain after intercourse takes 3 to 4 days to subside.

I'm really worried that, if the blood test next week comes back with yet another low reading, I'll be stuck with this mystery pain. If it isn't the prostate, what on earth is it?

Anyone had the same experience?

Many thanks.

0 likes, 8 replies

8 Replies

  • shak2340
    shak2340 paul_b

    Posted

    Sorry you to hear you have had this issue..it's strange how one min your fine and the next you have a mystery illness..I'm in the same boat as you my symptoms started the same as yours pain started after...anyway it's been over a year since you have posted I was wondering if you found anything to get relief
  • Guest
    Guest paul_b

    Posted

    I have had chronic pelvic pain on the right hand side of my bladder for 3 years with intermittent aching pain in my right kidney.  I have had virtually every test they can think of but came up with zilch on infection, cancer, stones and strictures.  I do have an enlarged prostate, last PSA was 2.1 in June.  I don't have prostatitis nor prostate cancer.  I had a cystoscopy with distention and biopsy in August 2015. The biopsy showed significant mast cell activation and inflammation in the bladder wall which is giving the pain but the cystoscopy didn't show much in the way of visible inflammation.  The urologist is reluctantly confirming interstitial cystitis, which occurs mainly in women, and is prescribing bladder instillations to hopefully resolve the pain.  I have a number of other allergy related conditions like asthma, non-coeliac gluten intolerance, allergic rhinitis and urticaria,, I believe these are related to my bladder pain.

    Hope this helps you on your quest to find out the source of your pain, from my experience it may take quite a while.

    • shak2340
      shak2340 Guest

      Posted

      Hello twiglet21...ur symptoms sound quite similar to mine,did ur symptoms start out of the blue or did somthing trigger it,I've had a lot of test through the NHS but still no closer to find any answers or relief
    • Guest
      Guest shak2340

      Posted

      It seemed to start out of the blue, the only triggers I can think of are the other allergy related conditions I have.  I initially thought it was a stone but that was quickly ruled out by a CT scan followed by a cystoscopy and ureteroscopy.  It then took 5 urologists to work it out, am now having bladder instillation treatment which is showing some signs of working.
    • shak2340
      shak2340 Guest

      Posted

      Ok that's interesting what other allergies do u have if u may ask?because I don't have any allergies or any previous medical condition so to me this is really strange.one min a normal fit man and the next someone with a chronic problem!im trying acupuncture but unfortunately I've had stop that for time being because I broke my ankle..do u recommend anything?
    • Guest
      Guest shak2340

      Posted

      I have an allergy to house dust mite primarily.  This causes allergic rhinitis and itching.  I also have asthma and gluten intolerance.  All these conditions are allergy related.  From the evidence I've read there does appear to be a link between other allergy related conditions and IC.  Unfortunately it is very difficult to get the medical profession who tend to be specialists in ENT, urology, gastro-intestinal, etc to take a broader view across conditions.   Check out the IC-Network website as they recommend a diet that can reduce IC effects, if it is that.  What I have done is to cut things out for a couple of months to see if they make a difference.  If they don't I start eating them again as there's no point in not eating what you like if it's not having a positive effect.
    • shak2340
      shak2340 Guest

      Posted

      Yes thanks I will look into that..my primary symptoms are pain on bladder filling and relief once I urinate,this discomfort comes back after every 2 hours fortunately not every 10 Mins like I have read with other people.i was wondering if anyone can recommend somthing good for the pain/discomfort.im on amitriptyline 50mg and gabipentin but not sure if that's doing any good
    • Guest
      Guest shak2340

      Posted

      I tried Gabapentin, Pregabalin and Amitriptyline and found the latter made me like a zombie but and give some pain relief at 75mg /day.   But it also made my urine stream so weak my urologist told me to come off it as he was worried I'd get AUR.  I haven't found anything else that works yet though the bladder instillations are showing some signs of improvement.
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