Endometriosis UK
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Please help I need any form of advice!?

I got diagnosed with endo in August last year, after being rushed into hospital in the middle of the night because a 12cm blood filled cyst had grown on womb & left ovary and was on the verge of bursting. I had open surgery and was in recovery (off work) for 2 months. I was put on the pill where you take them for 3 weeks and bleed for a week. Which I thought defeated the point of being on the pill because the bleeding is the problem?

Anyway, a year on and my pain has got progressively worse and I've now been bleeding for an entire month. I can't even describe how terrible the pain is, I've had to call in sick from work on numerous occasions and it really does effect my every day life. I'm only 21 and I'm going into my 2nd year of uni next month and I'm worried this is going to effect me and my education, as it's a;ready effected my work life.

I've been booked in again for key hole on the 28th of this month so my doctor can have a look and see what is causing my pain and the bleeding. My pain tends to be on the left hand side of my stomach and its either a dull, deep aching pain or a raw stabbing pain, but it can also sometimes be across my whole stomach.

I know the risks of organs fusing together etc and I have such a terrible feeling that this is the case. My doctor warned me of the risks of operating again and how it could result in damage to my organs.

Its all just a lot to take and any advice, or own experiences would help me I'm sure!

Thank you.

1 Reply

I'm always sad when I see posts from people so young; I too was diagnosed at 21 (I'm now 42). There are always risks but hopefully along with keyhole your doctor will be able to identify specific areas of concern and operate/remove some of the scar tissue and/or endometriosis. There is unfortunately no correlation between the amount of endo you have and the pain suffered.

My one regret was no children...I put it off focusing on my career although I have had four miscarriages; the pain I totally get...I'm now immobile using a rollator to get about and luckily work are pretty good. You should be covered under the Equality Act for long-term disability and I would suggest you start making noises about this. Your university (like mine) should be able to support you through the process with tutors allowing for extensions to coursework, etc. (though admittedly, it depends on the type of degree you're doing).

The pill was, I suspect, prescribed to allow some control of the level of bleeding; if you're bleeding constantly, however, it may be they need to change the prescription or type you're on.

Rather than think about things long-term, focus on the short-term periods as it could (and did for me) overwhelm me....when I focused on getting through weeks rather than months and years, I coped a little better. I hope that helps....sorry if it doesn't....

Good luck with your next procedure.


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