Please help/advise

[xRCx4x]

Hi, I’m new on this but thought reaching out for advise from other sufferers would help me.

I’m 25 and was diagnosed with endometriosis when I was 19. Diagnosis consisted of me being rushed into hospital in the middle of the night in complete agony and having emergency surgery to remove a 12cm blood filled cyst caused by endo which ruptured during surgery (close call). This was a laparotomy so was left recovering for a significant amount of time and have the big scar.

Since then I’ve had 3 more lots of surgery, thankfully only laparoscopys, as my endo fuses my surrounding organs together bowel, bladder etc.

I’m due in for ANOTHER laparoscopy sometime soon (original surgery got cancelled on the day).

I’m in constant pain and my doctor has made it clear my endo is pretty severe. I have issue with both my bladder and bowl. I’ve tried all the contraception methods and none of them agree with my body at all.

It’s effecting my entire life, due to this upcoming surgery my work have decided to let me go as it’s occurring during my probation period. Each time I have surgery it has repercussions on other aspects of my life such as my career.

I’m interested in the ablation but due to my age doctors are hesitant. Has anybody had the ablation at a similar age? I’m 26 next month. I have no interest in getting pregnant or carrying a child, my partner would be the one to carry if we decided to have children.

Any advice would help as I feel like something has to be done as I can’t carry on like this. Does it help? Will my age mean I’ll have further complications? ANY info/experiences will help.

Thank you.

[Christin_a]

Hello a couple of questions so I can try to help as best as I can.

Are you based in the UK? If so are you being seen by a BSGE centre?

What symptoms are you hoping to alleviate with utrine ablation? Has anyone suggested you may have adenomyosis? As if so ablation can make things worse apparently.

It's not something over personally had but I know people who have and have done some research on it. So will try and answer what I can.

[xRCx4x in reply to Christin_a]

Hey thank you for replying. Yes I’m in the UK and no I’m not unfortunately I’ve not heard of that?

I want to stop the heavy bleeding. And what I know about endo is that it’s the menstrual bleeding that causes a lot of the problem, and that’s what attaches itself to my other organs. Am I right in thinking this? If there’s no menstruation there will be less of a problem?

Thank you!!

[Christin_a in reply to xRCx4x]

Okay so bad on the fact you've had 4 surgeries in what 6 years? Suggests that you need to be seen by a specialist. If you Google BSGE centre you can find where you closest ones are. Depending where in the UK you are you can either get referred by your gp or by your current gynecologist. These are centres set up to deal with endo stages 3 and 4 but also people who have reoccurring surgeries in short spaces of time as it suggests someone with more specialist skills needs to have a look.

Unfortunately that's incorrect. By definition endometriosis are cells similar to (but not identical) to the lining of the womb. So just because you wouldn't have periods would not mean that you wouldn't have endo pains. As it's outside of your uterus and it's these cells that can cause the pain/can cause organs to stick together. Utrine ablation is just about reducing the flow of your period it is unlikely to have any effect on pain.

Guidelines for treatment of endo can be found online. In England you can search for the nice guidelines which is the recommended route for treatment and the options they consider for the treatment of endo under the NHS.