Newly diagnosed - need advice: Hello all... - Endometriosis UK

Endometriosis UK
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Newly diagnosed - need advice

HazelGecko626
HazelGecko626

Hello all,

So I’ve just been diagnosed with extreme endometriosis. It’s been found in my womb, ovaries, vagina and tubes. They couldn’t really get in much because all of the adhesions. My ovaries are now ‘kissing ovaries’ and meshed to my bowel. I had my laparoscopy this week and I knew it wasn’t good because of all the pain I’ve been in for a long time. I had prepared myself but I’m still looking to see if anyone had a similar experience. My womb was also tipped forward so everything was a bit of a mess, plus my consultant told me my pelvic areas were obliterated. I’m 35 and I’ve not had children yet and I’m now looking for some hope that maybe some other women have managed to get pregnant still or give me some advice that have been in a similar position. I know one of my tubes is unfixable but the other leaked a little. Think the priority is the bowel issue so any advice from recovery from laparoscopy to fertility stories would be extremely helpful. Thanks so much in advance x

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This isn’t very helpful for you so sorry I cannot be of any help for you however I wonder if you are able to answer a question I have. Before you had the laparoscopy which picked this up had you had any other scans like an internal ultrasound and where they clear? X

Hello, I had an ultrasound back in August last year that picked up endometriomas in both cysts and got referred to gynae hot clinic almost immediately. They did an internal ultrasound as well which confirmed this. When I went to gynae hot clinic, they said I was in the wrong place and referred me to gynae outpatients. Then I had to wait until October to get another double scan in which they had actually shrunk. The doctor I saw then was incredibly unhelpful and unknowledgeable. He didn’t ask me any questions about my symptoms, the cyst had shrunk but he said he couldn’t be sure what was in them and one point shrugged at me. It was me who had to tell him my other symptoms, and ask what happens next and he actually had to go out of the room to ask for help. So I had an unlucky experience I think but got on the waiting list then for the laparoscopy. However, I pushed around December as my health was deterioting, getting more digestive/diarrhoea issues. Then that consultant pushed me back to my gp to look for IBs. So it’s been a bit of a journey for me, but I’ve got my diagnosis in the end. Things are severe for me and I think I’ve had some uninformed people along the way so that didn’t help. They didn’t do another scan on me at all even when I went back in February. Now I’ve got to have an MRI in the next few days.

Oh wow you’ve had a nightmare then! I’m not long in to this whole situation. Only just over 3 months in of being in pain daily to the point I can barely walk. But I had an internal ultrasound which was clear so it’s a bit of a waiting game at the moment to see what will happen next! X

I really hope you get sorted soon, it’s such a painful condition that sometimes can only really be diagnosed with a laparoscopy. Just keep pestering that’s what I did x

Thank you and I hope you get some answers to your question x

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