How long did it take to get diagnosed wit... - Endometriosis UK

Endometriosis UK
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How long did it take to get diagnosed with endometriosis from symptoms starting?


Hoping someone could offer some advice.

I start getting pelvic pain and bloating and stomach issues after having my second child may 2017 but put it down to having kids.

Then ever since, every month my periods have gotten more painful or more symptoms. Now my pelvic and lower abdomen is extremely tender, burning and cramps in pelvic area and ovaries. Pain in hips and back, painful and heavy periods, feeling sick, severe pms, no energy, tired all the time, severe pain in thighs, weeing a lot. Stomach problems. Pain when going to the toilet when on period. Bloated most the time. I can’t function when I’m on my period.

I’ve been to doctors lots of times and they keep fobbing me off, I’ve seen a gynaecologist once and she said my ca125 levels were high and to have them re tested but as they fell back into normal range at 29, she didn’t want to investigate further.

Now every month I’m scared of my period coming cause it is so painful and heavy I can’t go out or do anything. I’ve had a colonoscopy as I had stomach problems but that was clear.

Hoping someone will read and give abit of advice as what to do now and if it could be endo. Thanks and sorry for long paragraph.

8 Replies

I was fobbed off for far too many years until I never gave up & that took around two years from symptoms to operation but in all honestly symptoms started 12 years before.

I found the best thing I did was keep a pain diary. I made it visual and then turned my pain and bleeding into a percentage, my worst month before seeing the consultant was 84% in pain - she then agreed for an operation.

HiddenThis reply has been deleted
Jemcc22 in reply to Hidden

I’ve never heard of that before, is that similar ? I’ll google it x

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Jemcc22 in reply to Hidden

Thanks, I’ve had a look on google on a few sites but I think something is affecting my other organs as well because my symptoms, I’ve also found out endo can be caused because childbirth if a woman had post partum bleeding and I did and the lady manually removed blood clots so I’m going to the doctor and I’ll suggest these things to them x

I’ve had issues for over 11 years, i had my first lap yesterday where i was diagnosed with severe Endo. I literally went to the doctors 1-2 times every month for 15 months straight until they referred me. I then only had 2 appointments with my gynae and was told i needed surgery. Keep pushing your doctor to refer you i was only referred because i cried x

Jemcc22 in reply to jelleytots10

Hi thanks for replying. Doctors just don’t listen do they. What symptoms do you have of endo if you don’t mind me asking ?

jelleytots10 in reply to Jemcc22

Really bad period pains where I can’t get out of bed for 2 days, heavy bleeding, bowel and bladder issues and a dull ache in my left side. I have Endo on my bowel and bladder and left fallopian tube. My bowel is stuck to my uterus so got to have another lap in 3 months time after being on zoladex injections x

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