Endometriosis - what to do?

(7 Posts)
woodpigeongrey Mon 01-Feb-21 13:27:57

I was told I have endometriosis last year, after I was reffered for a scan following a severe pain one night. They decided the pain was probably a cyst bursting, and told me I had another (unburst) endometrioma about an inch big. This all came as a surprise to me as I'd never had any gynae problems before this point, other than heavy periods (I'm 43).

Anyway, I have now tried out the mini pill which I stopped as it made me really anxious. I started on the combined pill in August but stopped that recently due to spotting all the time and I think it might have also been affecting my mood. I've since spoken to the Dr who has prescribed a higher oestrogen version of the pill for me to try out to reduce the spotting. She's also still talking about the Mirena but I'm wary of that as I don't get on particularly well with hormonal things and I'm concerned about them refusing to remove it if I have problems. Since stopping the combined pill I'm getting some discomfort on the side with the cyst...sad

Am I being unrealistic to think I can find a treatment without any side effects? Please does anybody have any advice on what I should do next?

OP’s posts: |
Inthesameboatatmo Mon 01-Feb-21 13:48:22

Hi op.
I've got endometriosis and pcos.
Im 41.
I've bit had the coil as I have heard awful things about it. But when my son was born 7 years ago by ecs I had the cyst removed and was sterilised at the same time.
The xyat I had was found to be a dermoid cyst which is made if keratin so it had teeth ,nails and hair and was the size of a grapefruit.
I would suggest seeing if you can get the cyst removed if its causing discomfort

SinkGirl Mon 01-Feb-21 13:53:01

I was diagnosed with Endo at 22 and then adenomyosis too.

Unfortunately all hormonal treatments have side effects to some degree, finding one that suits you can be a long process. Mirena releases a very low dose of progesterone only and works well for some but was hideous for me and took a long time to get it removed.

Ideally you need excision surgery with a specialist - that’s likely to make the biggest difference without ongoing side effects but obviously there is a recovery time of a few weeks and risks as with any surgery.

woodpigeongrey Mon 01-Feb-21 15:36:21

Thanks both of you. I bet you were glad to get rid of that inthesameboat!

Unfortunately I'm burying my head in the sand about surgery at the moment as I had a very bad experience the one time I've had an anaesthetic. The discomfort is only low level at the moment so maybe I'll try out the stronger pill. Just collected them from the chemist. It's weird because I took the pill for years before I had children without any problems.

OP’s posts: |
SinkGirl Mon 01-Feb-21 16:28:54

Unfortunately many GPs aren’t too clued up on different kinds of pills - I was on it for 20 years on and off before I found the info on this page which was a genuine epiphany. Hopefully it will help you too.

I need pills at the oestrogen dominant end or I lose my mind

woodpigeongrey Tue 02-Feb-21 09:14:07

That's an interesting page thanks. I couldn't take microgynon years ago and also didn't get on with the progesterone based mini pill, so I think I probably need the more oestrogen based ones as well.

OP’s posts: |
SinkGirl Tue 02-Feb-21 10:54:55

Microgynon is the worst pill I’ve ever taken. For some i am sure it’s great. Marvelon works well for me usually. Of course being over 35 means combined pills come with a higher risk too and this is more true for those with higher oestrogen. It’s so difficult.

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