Not yet diagnosed: After nearly 8 years of... - Endometriosis UK

Endometriosis UK

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Not yet diagnosed

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After nearly 8 years of unexplained pelvic pain, and a weekend of being in and out of my local out of hours GP surgery, my GP today finally suggested I may be suffering from endometriosis. I'm in a really bad place as unfortunately I was also told today I had lost my job, due to ongoing sickness related absence. Been in agony for four days now and could really use a friend to speak to.

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Tboag profile image
Tboag

Sorry to hear about your job, unfortunately ive also just lost my job due to absence, it was only part time and I only started in July, I'm still waiting my laporoscopy date, good luck xx

in reply to Tboag

Can I ask what led to your diagnosis? With me, it seems to have been a process of elimination- they've scanned my bladder and kidneys with ultrasound and x-ray but no such luck. Urine tests always show negative results for infection so I'm reaching the end of my tether.

Tboag profile image
Tboag in reply to

Hi, I've always had painfull periods but like most just thought it to be a pain in the @@@@, I've 3 sons and after my last 10 years ago ive suffered with lower back pain and pelvic pain, I always put the pelvic pain down to the back, but a year ago it started getting worse and I would be in a lot of discomfort after sex, so last April I went to the docs explained all the above, and she sent me for ultrasound and colposcopy all clear, pap clear water slightly up, so I then had a abdominal scan and they found a kidney stone, 9 mms so after that I was put on a list for lithotripsy to clear the stone, whist waiting my pains got worse so ended up in hospital, due to the stone, although the docs where saying they didn't think it was th stone causing the pain, they wasn't willing to investigate further until stone had gone, I had the lithotripsy earlier and no change, I'm now in near on daily pain that ranges from achy to real pain, so doc referred me back to gyne who thankfully is a endo and Aden, lap specialist, and I'm now waiting, waiting, waiting, again, again,

Oh goodness, I am so sorry to hear about that! I hope you get things sorted soon. I have had bad abdominal pains since I was about 11, I was always told this was down to painful periods, recurring urine infections etc. I went for an ultrasound on my bladder, urinary tract and kidneys at 13, they came back clear. For a few years they seemed to calm down, but around Nov '13 I had terrible pains, it seemed to radiate down in a vertical line from the top of my bikini line to my vaginal entrance (if it were a triangle it would be from the point upwards). Sometimes around my sides and the small of my back. Again I was told it was a UTI despite all my tests coming back clear. This flared up again in Feb '14 and continued throughout the summer last year, all my urine tests always came back negative, with slight variations, once showed protein in my urine, another a spot of blood, but never infection. In October I was finally sent for another ultrasound and x-ray, again on my bladder, urinary tract and kidneys, they had suspicions it was a urethral stricture (basically a bend in my urethra). Everything came back negative, bar some mild kidney scarring on my right hand side. This weekend the pain got so bad I missed shifts in work, and was unfortunately let go. I've been put on cocodamol, ibruprofen and buscopan in the hopes it can ease my pain, seems to be working for now and I was able to make it to university today but reaching the end of my tether. My own GP has referred me to a Gyno with suspected Endometriosis, where as the out of hours GP has told me he suspects it could be connected to my bowels.

Was just looking to hear others stories of their diagnosis.

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