Guidance please

[LK09]

Hello Ladies

My name is Lisa and I have been struggling with Endometriosis a number of years now. I am diagnosed as stage IV. I have had a BSO in 2012 and several other ops since then. Unable to have a full hysterectomy as it's too risky I am told and could lead to bowel injury. I still have bleeding and pain despite taking zoladex injections, progesterone tablets and evorel 100 patches. Recently I had to replace a mirena coil under general anastasia as the previous one was out of placed and embedded . 4 weeks later I am still having problems with pain and bleeding. Does anybody have any advice or guidance to help me please. I am so frustrated at myself for always being ill.

[Hidden]

Are you being seen at a bsge centre?

[LK09 in reply to Hidden]

Thank you for your response. I am being seen both at St George's hospital gynaecology and QCCH. Currently I am taking mefenamic acid and tranexamic acid tabs to reduce pain and bleeding but I stopped after 3 days due to side effects (diarrhoea)

[Lulububs in reply to LK09]

I take the transexamic it is something i only take as soon as start period then for about four days. Yeh it will give u a bit of a gippy tummy first couple times u use them but stick with them they have been a blessing for me...

I clot badly through period which is why im on them and it has made my period more easier to pass as the clots are more just thinner blood(tmi) and less painful periods..

[LK09 in reply to Lulububs]

Thank you for your reply. I am post op menopause and am told that I have residual ovarian properties that is causing my bleeding. The mirena is meant to help and I am told it takes a while to 'settle '. I never was able to have kids so not the best person to judge types of pain but the pain I get comes in waves and feels like I am having con tractions

[Lulububs in reply to LK09]

I dont have kids either both by choice but i dont think i would have been able to either but that exactly what mine were like, id b laying on floor puffing, sweating in contractions and it was because my blood was so clotted i was giving birth to clots size of a lemon... which tricked my body into thinking it was pregnant...

The tranexamic acid has worked well for me as it has thinned my blood so i still get cramps and the normal pain but not labour pains.. seriously i dont know how people do labour lol

[LK09 in reply to Lulububs]

Gosh that sounds so awful. Happy to hear it's more manageable now. I think we women are so resilient! Despite all this we still manage to find the way to carry on. Thank you for chatting with me x

[Hidden in reply to LK09]

I don't know either of these hospitals, sorry. The list of bsge accredited centres for severe endo is here: bsge.org.uk/centre/

[LK09]

Thank you for sharing. Reading the link no I have never been to any of the centres before. Thank you x

[LK09]

Do you know how easy it is to get an appointment? Is it via GP referral ?