Endometriosis UK
34,793 members31,016 posts

18 Months of Bleeding and Need Your Ideas!

(I passed ‘wits end’ some time ago…) After having my daughter nearly 18 months ago, I’ve had exactly 5 bleed-free days. I would like a last attempt for a sibling for her but despite saying EVERY. SINGLE. TIME. that I don’t want the mirena coil, it’s all they mention. I had a endometrial biopsy 3 months ago and the results only just came back in saying I have a polyp, no mention of endo and they recommend the coil. Arrrrrgh! My doc only just put me on tranexamic acid, which doesn’t seem to work for me yet. He also put me on amitriptyline which has considerably reduced my need for codeine and oramorph (after 4 years of just being given large quantities of cocodamol, but never enough, and being told to 'get on with it’).

Does anyone have any suggestions at all how to stop this, even just so my wonderfully patient and considerate partner can just enjoy some ‘us’ time for a change? I’m 43 or near as damnit and we have little time left. I have only managed pregnancy 3 times in 20+ years and the first two ended tragically, the last and almost fatal one can be finally credited (a year after losing it and still having constant labour type pains) with my diagnosis of endo after nearly 30 years of problems.

When the doc tells you that you need to ‘bang on desks’ to get things done and asks what the hospital treatment plan is, inside I died a little. There is no plan, I was diagnosed one day and never given any information about it. I’ve had to teach myself and the docs I’ve come into contact with either don’t care or simply don’t know. As this community is widely experienced, can anyone offer any suggestions how to stop the bleeding so we can try one more time? We were incredibly lucky to have our daughter after labour began at 27 weeks and I was bleeding a lot of the pregnancy so I know there are no guarantees for a future pregnancy but I don’t think it’s fair to put me on a treatment which voids all hope, without properly checking why the bleeding won’t stop. I never had this before my daughter, many days of each month, but not nearly every single day! 

It’s so frustrating that nobody including the hospital seem to have any answers or even try to find out why. What is the point of ‘banging on desks’ if you can’t even get to see someone with a desk to discuss it?! I feel really invisible right now and it’s not fair to my little family who suffer as a result. Nobody but us endo girls even know the half of what we go through just to have a ‘normal life’, whatever that may be!

Yours hopefully x

You may also like...