Newbie - so much to think about...

[PinkDaisy]

Hi everyone I'm new to the site and to Endo. I thought I'd explain a bit about my circumstances in the hope I can get it straight in my head and try to deal with it all.

I'm 36 and although my periods have been quite heavy for a few years I hadn't really thought this was something I could do much about. Whilst in London in June I had sudden lower abdo pain which moved to the right hand side & I was admitted to UCHL thinking it might be appendicitis or connected to previous medical problems - I had kidney cancer when I was 16. A routine ultrasound for that showed up cysts on my ovaries and whilst at UCHL I was told I had severe Endo & that everything was stuck together. I was given painkillers and allowed home.

I had already been referred to one gynaecologist for the cysts and met him when I got back from London but he just referred me to another Gynaecologist who I met 2 months later. I had another internal ultrasound & was told that my Endo was very severe, I had numerous cysts on my ovaries which were all twisted and stuck to my womb & each other and also probable Endo in the pouch of Douglas and on my bowel. Possibly also adenomyosis although not confirmed. They were surprised I wasn't in more pain than I am and for that at least I should be - and am - grateful.

I was put on the pill to try to prevent things getting worse but my blood pressure is borderline so ive cut out caffeine, started eating less & more healthily and exercising more to lose weight. I was sent for an MRI and this has confirmed cysts, one of which is 7cm and pushing everything else over to one side.

My gynaecologist now needs me to make decision. Either continue as i am managing things with medication until I decide I want children or the Endo causes a problem and then have surgery OR have surgery straight off - firstly draining cysts and checking extent of Endo and then trying to remove all Endo possibly requiring bowel resection too.

I had previously told dr that I want to keep my fertility because once someone tells me I can't do something - eg have kids - then I immediately want it. Suddenly everyone around me is pregnant or has a baby and I feel so upset thinking I might not have that. But then I'm sensible and know my husband and I are happy without kids and I don't want to bring a baby into the world that we can't afford just because it might be too late if I wait.

Then there's the fact that with my cancer treatment and radiotherapy I might not be able to conceive anyway and how pain and heartache do i put myself through TTC when my chances are slim.

In all honesty what I want is for me to be the healthiest and pain free I can be for as long as possible. If that means not having children then I would be prepared to do so. My husband is being so supportive but he just wants to make sure I'm ok and not putting myself at risk.

So that's my story - sorry its so long. If anyone has any pearls of wisdom or suggestions of anything that helps in decision making and getting your head around this awful condition, I'd be grateful to know. Thank you for reading.

[missteal]

Did you have a laparoscopy for them to diagnose endo? They don't normal give a diagnosis unless it's been seen in the flesh (so to speak). Plus I've never heard of endo being diagnosed by a scan of any kind as you can't see it

If it was me, I'd want them to do a laparoscopy (key hole surgery) to check to make sure it's endo. There are lots of other reasons you could have scarring sticking everything together, including infection.

I'm amazed you haven't had any symptoms though. I have heard that gynea issues are strange when it comes to pain, some have small problems and have loads of pain, others have lots of different problems and have no symptoms at all!!

Fertility is a funny and miraculous thing. I was told I probably wouldn't have kids because of some abuse I went through as a child. I had a child age 21 and another age 23.....then age 25 found out I have mild endo, lots of scarring and adenomyosis (endo inside the muscular wall of the womb). I've known friends who have no gynea problems where it took a year for them to conceive! It's one thing you really won't know until you try so I wouldn't put children out of your head at all.

Welcome to the forum and I hope you find it as useful as I have xx

[PinkDaisy in reply to missteal]

Hi thanks for your comment. Re diagnosis by lap, that was my understanding too but i was told that luckily I'd been admitted to University College Hospital London which has specialist endo centre and is one of few places in uk who can diagnose without lap. I don't know how the transvaginal scanner there is any different but I understand they're some of the best gynaes. I'm making an appointment to discuss options with my gynae. Don't want lots of ops if pain will get worse but might consider draining/cleaning cysts and exploring extent of any endo at same time? We'll see - but thanks again for your comments