Endometriosis UK
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undiagnosed newbie- do i have endo ??? what happens now ???

hi, this is my first post here, after months of researching online i'm convinced i have endo. Way back when i was about 15 (20yrs ago), my periods started getting very painful, severe cramps , back pain, aching legs, nausea. I assumed it was normal and thought nothing of it (i went on the pill at 16).

I had my first child at 18 and my periods got less painful and lighter. A year or so before my second child was conceived i was getting cramps, bloating and visible 'bubbling', waves in my stomach as if i was pregnant. The doctor laughed when i described the movement in my stomach 'well you're obvs not pregnant' (i was a size 6 at the time, struggling to keep weight on) he diagnosed IBS and sent me on my way.

Years later when my daughter (2nd child) was about 4, my periods were becoming irregular, bleeding in between periods, fatigued, and i was very low, emotionally. I was taken off the pill, given iron tablets even though i wasn't anaemic and i had the depo injection for 2 yrs. I hated it and was still not right so opted for a copper coil as the doctor said he wanted to try non-hormonal contraceptive. It was fitted in 2010, when i was 30.

My periods went back to normal after a while, until christmas 2013 when i started getting severe cramps, nausea, lower back pain to the point i couldnt stand up straight, one morning i went to the toilet and was hit with an horrendous pain in my pelvic area and my back passage, i couldnt get up off the toilet. Eventually i managed to crawl to my bed, my partner came home and took me to docs who took swabs, blood test, urine tests - everything came back clear- i was diagnosed with P.I.D and given antibiotics, after 3 weeks i felt better.

Over the last 3 yrs my periods have become a lot heavier and more painful again. In april this year, the P.I.D symptoms started again to the point i had to have a whole week off work ( id only had 3 days off in 5yrs). diagnosed P.I.D again, more antibiotics, which didnt work this time, since april i have had maybe 7 docs apps, and 2 ultrasound scans, first scan showed a 2cm cyst on my left ovary, docs said it could be twisting, causing the pain but yesterday i went for my 2nd scan (inc transvaginal this time) the cyst has gone, but the pain hasn't, the last 4 days have been pretty bad. After the internal yest my back is in bits, last night i cried when i walked to the kitchen as i felt like my uterus was pushing its way out, stabbing pains like a hot poker shoved up my back end and this morning im bleeding a little ( not my period, only finished last week). What i want to know is where do i go from here, can i DEMAND a laparoscopy or M.R.I, i feel like im going in circles, being pushed from 1 healthcare'proffesional' to the next, im back at work next week and not sure how im going to cope. Just a little advice and support would be appreciated

2 Replies

I have a long list of symptoms which may or may not be connected, not always the same symptoms. Stress and worry seem to exacerbate the condition. whilst on holiday for a week i had only 1 bad day out of 7.

my symptoms are:

-worsening period pain/ heavier bleeding/ spotting mid cycle/ ovulation pain

-pelvic pain, dull aches to severe cramps

-exhausted and unable to focus on simple tasks/ conversations

-lower back pain, particularly the left side

-bowel pain when going to the toilet

-feeling of unemptied bladder/bowel when in pain


-leg aches/ numbness which sometimes reaches down to my feet, mostly left side, like ive done a 3 hr session at the gym

-loose bowels before/ during period, constipation when not on period

-painful bloating especially after eating only a small meal

-gritty looking dark brown blood for first 2 days of period

-pain during sex and cramps/ spotting for couple of days afterwards

-feeling low, weepy- uncontrollable

-fever during an episode

-blood in urine


-hips and thighs ache, feel heavy/ stiff

-dizzy spells/ swimming feelin in head as if im watching from the outside (if that makes sense)

-i had a black stool a few days back

-smelly discharge sometimes, pink discharge on occasion


Hey! Sounds similar to what I've been through! I was also treated for p.i.d etc!! I've still not got a confirmed diagnosis but they are doing a laproscopy soon hopefully to find the cause! One surgeon told me he wouldn't give me a ct scan for "belly ache" - I broke down, and told him at 22 years old I shouldn't be having to deal with this much pain on my own, and that its disrupting my family life, sex life and work!! He soon took me seriously! Just keep pushing and pushing! I hope you get an answer soon! Xxxx

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