Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Pain in pelvis

by Anne

I am a sufferer of extensive endometriosis found in fallopian tube previously removed. Ended up losing both due to damage and furring up.

Lots of operations over the years, Laparoscopy and Hysteroscopy in Dec 2007 confirmed tube stump stuck to bowel and tethered by filmy adhesions both sides, and in stomach (belly button area).

Initial relief after op removed as much as possible due to close proximity to bowel. Symptoms came back and tried Mirena, Zoladex, plus HRT addback Tibolone (nothing worked).

Surgeon felt adhesions ware likely to be culprit. After another visit to consultant he said pain could be muscular skeletal but if things didn't improve with menopause would consider
Bilateral Salpingo Oopherectomy.

Was warned a big operation like this could make adhesions worse, a big gamble so waited even longer.

Symptoms: Right (deep) pelvic pinching (worse when sitting or after eating) Cannot bear anything tight round pelvis (waistbands,) pulling tugging pain, low back ache, bowel problems either constipation (made worse by codeine based pain relief - have to take a variety of stool looseners such as Fybogel, Merbervine, Lactalose and the odd Senna.

Also get bouts of diarrhoea and get sudden need to urinate and frequent trips to the loo. Fatigue a big problem, feel quite sickly and unwell, stiff and achy body.

Often get ache down to right knee too, bloating along with anxiety. Sleep is poor despite sleeping tablet.

Wake early and often, as if there is any pressure at all in pelvis, stomach, bowel or bladder due to bowel or bladder being even part full it hurts.

Find myself contorting my body and pulling right knee up to chest in bed to try and stretch out pain and loosen tightness in pelvis.

I do also have Diverculitis Disease, Hiatus Hernia and Prolapse to complicate things. Have been told I have IBS but now I am 6 months into menopause these symptoms are probably more likely to be other health issues ie adhesions, diverticulitis disease, prolapse.

But not at all sure which is causing what symptom. Recent ultrasound inconclusive and indicated normal uterus so radical hysterectomy probably slightly less likely.

Discussed with GP possible referral to endometriosis/adhesion specialist. Really confused as to what is the best next step but these are the symptoms.



Title: Thank you

Just read your article and thought you where talking about me, my symptoms are the same except pain is on left side, and also shoots right down to my knee. It is now 2am and i am sitting here with a hot water bottle on my stomach and top of my leg to ease symptoms.

Trying not to take painkillers tonight as cannot go to the toilet because of them, as you said they cause bowel problems.

I feel like no one takes this illness/disease serious. Don't talk about it with family as they just give me a blank look and tell me to take a painkiller!! Trying to keep up with working and bringing up my two sons, lone parent.

Try everyday to be positive and eat right etc.. Just had a really bad week, fourth day of BAD pain, tired and feel low. Hope tomorrow is better.

Thank you for sharing as it made me feel less alone and like someone does understand. Good luck and hope things work out for both of us.

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