how do you deal with your endometriosis?

Hi Ladies,

I'm new here - hope this is in the right place! There were some infertility and health type boards but none of them seemed to suit endo.

I was wondering how other ladies here with endo deal with it day to day, and has it affected your fertility.

I had my first lap in February 2011, after 14 years of crippling pain which resulted in a lot of missed days of school, uni and work! I also have considerable back problems, fatigue and IBS, which evidently are associated with endo!

I had an endometrioma in one ovary, it wasn't huge but it was substantial, my doctor also mentioned popping a few little blister like cysts (sounds like PCOS to me) but she seems to think I don't have PCOS, so quite confused about that one.

My doctors advice was to either start TTC straight after the op, or to control my endo with a hormone supplement of progestergone. So we ended up deciding to control it with a Mirena.

It's been fairly awesome since - I've had three periods, and although they've been crampy, they definitely haven't been crippling :) but now I wonder - when I have it removed when we decide to start ttc, will my periods go back to being abnormal, heavy, and short luteal phase like they were pre-op?

Didn't want to read and run - although I'm not in the same boat as you, I have had an op for endo. From my experiance, periods on the pill were great, it wasn't until I came off it with the intent of having a baby that they got bad. Probably not what you wanted to hear - but then again, that wasn't after an op or anything, I was just on the pill for about seven years.

I can't really answer the post-op question, because I got pregnant straight away after mine. But my first after having a baby was pretty dreadful; I'm hoping that was just my body getting back into the swing of things rather than the endo having come back.

And it is possible to have cysts on your ovaries without having PCOS, as weird as that sounds! Hopefully your Drs right, you don't need another complication in the mix!

Thanks for your replies guys :)

Mummy_becks - my gyno told me that the mirena should slow, or even halt endo growth, so basically my endo is being held at bay until we're ready to try.

I'd love to start trying now, but now isn't the time unfortunately.

Halted - good call with the gym, a girl I know mentioned the gym really helps her so I'll give that a go once I start my new job! (Health allowance ftw!)

The mirena should usually do that but it doesn't work the same for everyone.

I also agree exercise does help, I do a lot in a short amount of time when I go to the gym, it isn't easy exercise I do either.

 

My endometriosis is caused by ovarian cysts that recur and continue to rupture damaging the surrounding tissue causing it to scar. i have had 2 surgeries for this and am at risk for ectopic pregnancies and possibly eventually having a hysterectomy to deal with the pain. I am not sure if this helps at all considering that mine is not caused or diagnosed as an auto immune disease.

treatment for menopause
http://www.womenhealthzone.com/menopause/treatment-for-menopause-cognitive-behavioral-therapy-cbt/

I can't feel my Mirena, but I can feel the strings when I am in the bath. It is soemthing you should do to make sure you can still feel them or you can pay to get your dr to do the same thing.

Nay,

The Jadelle is like the pill, doesn't suit everyone. I know of someone who had constant bleeding while she had it in.