Could it be endometriosis?: Hello everyone... - Endometriosis UK

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Could it be endometriosis?


Hello everyone - I'm trying to arm myself with the right information before my gynae appoint on 24th November and I just wanted to ask if you have any light to shed on the below ... I believe I may well have endometriosis, but was wondering/hoping you could give me some confidence/assurance that I may be right?

I have crappy periods, they aren't massively heavy (but they do hurt, a lot), but I have an incredibly irregular cycle & bleeding. Before children my cycle was small at 22-26 days. Since Max (my youngest), so almost 6 years now it's been a living hell of 10 days on 10 days off, for the majority of the time. In the last 18ish months it's gone from irregular to completely haywire, the gap between bleeds has lengthened to 14-20 days between periods and the bleed is anything from 5-10 days.

However, on about day 10 of the gap it really really feels like my period is coming, I'm lethargic, bloated, head-achy & have bad cramping in my back and lower abdomen (won't even mention my bowel movements - yikes!) ... but my first bleed doesn't come until day 14 or later (see above). It's almost as if it's stuck or something is blocking the way or that my system isn't working properly. e.g. it was Friday last week when I thought "here it comes" and I've spent every day since assuming it was going to arrive (specifically Tuesday), but still today it's not here - but the cramping is suggesting that it will be any second now!

On top of that, there's the PMT which starts before day 10 of the gap, so I probably have 7 "normal" days each month - humph! I can't go on the pill, cos of my migraines, I tried the mini pill 3 years ago but it sent me totally crazy & I bled continuously as opposed to not at all. In all honesty, right now, I actually would just love to have it all stopped, or to have a blood test and be told that I'm peri-menopausal, but 18 months ago, when they last did a blood test, I wasn't. My last ultrasound was 2 years ago - so I know I need to get another one.

Btw - my mum had a full emergency hysterectomy at 33 because of endometriosis, after 4 children & 2 miscarriages. I still vividly remember her in pain, which is why I have put off this line of thought for myself until now - my pain is not as crippling as it was for her (or I'm much tougher ;)).

I know self-diagnosis is bad, but the last time I tried to deal with this (some 18 months ago) I was brushed aside by the gynae, and the gynae before that said it was all in my head!!! This latest gynae comes on a recommendation, so I want to go in and push hard to delve deeper. So any clues, tips, advice would help me considerably.

Thanks in advance (and apologies for the long post)

1 Reply

Hi. Sorry you are going through so much. I have been fortunate and never felt brushed off by gynae consultants, but have had to to fight with GP's to get an initial referral. I have found that writing a list of symptoms and taking it with you is helpful, as you can get nervous and forgetful during the consultation. Don't forget to mention emotional as well as physical symptoms, and how it is affecting work, family, social aspects of your life.

Also if you can take someone with you for support, I find if i forget things my partner will jump in and answer for me (then spend the rest of the day apologising and ensuring i'm not mad at him lol!!) But, having him there for support, and as the person who deals with my grumpiness when the pain is bad he can shed light on the situation from a rationale perspective when I can perhaps be viewed as overly emotional!

Good luck, I hope you get some answers.

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