Endometriosis and TTC...any experiences to share?

[annabanana84]

Hello,
About 5 years ago, I started continuous bleeding, very heavy and depositing blood clots, along with severe, agonising stomach cramps. I was losing so much blood, I was diagnosed with anemia. I went back and forth to the doctor, to the hospital, but nothing wa ever found, but I am almost certain I have endometriosis after reading so many stories and symtoms online. I had put on around 8 stone in around 7 years, so maybe that had something to do with my abnormal bleeding and pain.

The only thing the specialist at hospital could suggest was to put me on the mirena coil to stop the bleeding, clots and pain, and it's worked, I now have no periods at all, and free of pain, but now my partner and I are hoping to start a family. First I need to lose an awful lot of weight beforehand in the hope that when the coil is taken out, I won't be bleeding abnormally like before, and i'll have normal periods, but I'm very much aware that the road to becoming parents may be a very difficult one.

Does anyone with any experience of this have any stories (happy, or not so happy) to share?

My guess is that five years ago they poked and prodded you about and got nowhere. You were fobbed off back then unfortunately and I would bet on it as well that they did a lot of tests but not the one that really mattered - a laparoscopy. Endo if it is there is usually diagnosed through a lap op, no blood test or ultrasound scan will pick it up.

If your bleeding becomes as bad as before (and I would say this could well happen) seek advice from a gynae who actually specialises in endometriosis (ask them outright about their experience in dealing with endometriosis); some generally qualified gynaes are not up to speed and can in some cases make things worse.

With regards to a blood test, have your thyroid levels been tested to date?. This may also account for the weight gain (its not beyond the realms of possibility).

I have endo and am a parent but I needed lap type surgery in order to conceive. Endo does not go away of its own accord and can recur.

www.endo.org.uk is a good website.