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Women's health

do clots always mean endo?

2 replies

bobbythejobby · 03/07/2020 19:52

Wondering if anyone can help.

I have always had horrifically painful periods (I posted not that long ago about how painful my periods are) - every period I get is painful but some months (too many in my opinion) are so painful I can barely walk, barely talk, my legs shake uncontrollably, panting as if I'm in labour, sweating so bad my clothes and the bedsheets are completely soaked through, vomiting, you name it, it's absolutely horrific.

I've had a laparoscopy six years ago where nothing was found but I've always swung between believing my painful periods are not endo and then the next month believing this pain cannot possibly be normal.

I do seem to have quite a lot of endo symptoms. Aside from the painful periods I also get painful bowel movements but only when I have my period, an intense sharp shooting pain right up my arse (can't think of any 'polite' way of putting that), some months I get very brown blood instead of red, pain all down my legs to my ankles and a leaden, heavy feeling in my legs but only when I have my period and, what's worrying me most of all at the moment, massive clots of blood during my period. I've noticed on exceptionally bad months that the bleeding stops and starts - the pain will start and I will be absolutely floored for a few hours and the bleeding will be extremely heavy (soaking through the normal pads in less than an hour and full of large bright red, sometimes black, clots) then the bleeding completely stops for six or seven hours and then comes back again (and I'm floored by it again). This will go on for days and I'm literally exhausted after having this today and it's only the first day so probably got another day of this tomorrow.

I was on the pill for many, many years and funnily enough the pain disappeared for all of that time and then reappeared as soon as I was contraceptive-free.

I've always been confused that they didn't find endo when I had the lap - even my GP was completely convinced it was going to come back that I had endo because i've had so many problems with my periods. But then I have heard of some women who have had several laps before the endo was found. Honestly, I just wish I knew one way or another as I'm really struggling with my periods and now I'm in my 30s they're only getting worse. My mind keeps coming back to the thought that there is no way 'normal' periods should be so painful to render me completely incapacitated for several hours, shaking and sweating and throwing up into a bucket at the side of the bed because I can't walk to the toilet.

For anyone who has endo does this sound like endo? Did it take more than one lap for it to be found?

OP posts:
AttilaTheMeerkat · 03/07/2020 20:19

Hi bobby

It looks like the surgeon who performed the lap six years ago missed any and all endometriosis present at the time. Not all endometriosis presents typically and it looks like it got missed.

The pill certainly dampens any endometriosis right down only for it to recur with a vengeance when the pill is stopped.

Your paragraph stating symptoms is all highly suggestive of endometriosis being present; I have had all those symptoms including the brown blood (yet another indicator of this), the pain down the legs (in my case the endo was aggravating the sciatic nerve causing pain), the javelin arse (there can certainly be rectal involvement with endo) and the clots (endo can also cause heavy bleeding to arise). I sometimes got painful bowel cramps too; this can be due to endometriosis on the intestines.

I would insist to the GP that you are referred asap to a BSGE accredited endometriosis centre; link is here:-

I was fortunate in that my endometriosis was found straight away but I do know of women who have had more than 1 lap op. It took a long time (17 years to be precise) for it to be diagnosed mind you, my problems with endo started directly with onset of menses at 14. I realise that now but the internet did not exist then and I had no idea.

Another good website I would direct you to is this one:- and do read this section too:-

Best of luck and do not be fobbed off.

bobbythejobby · 04/07/2020 09:50

My problems also started as soon as my periods started. Thanks for the links - off to have a look at those now.

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