New here, just been diagnosed with endometriosis

Hello everyone

Sorry in advance for this long post! So I've always had really bad period pain, I started my period at 11 and now i'm 26. I've also often found intercourse painful. I'm feeling annoyed that i left it so long to go to the doctors to get it checked but what can you do.

I had a transvaginal ultrasound and was told that the lining of my womb was abnormally thick and that she could see a polyp and that I had a cyst on each ovary and that endometriosis could be a possibility but they couldn't say from the transvaginal ultrasound. I was however just about to get my period so the nurse suggested that that could explain the thickness of the womb and the polyp.

I was then referred to a gynaecologist. She performed a hysteroscopy and said that the lining of the womb was fine and that she couldn't see a polyp. Which suggested that the nurse had been correct. This felt quite positive.

The gynaecologist referred me back for another transvaginal ultrasound to check on the cysts. The nurse said that the cysts were still there (2cm on the left and 3cm on the right), and that I definitely have endometriosis.

This was yesterday and i'm feeling extremely despondent about the whole thing. I would say that my period has actually gotten a little bit better as I've gotten older, i will occasional (every 6 months), get a really painful one where I cant leave the house or exercise but painkillers always work. But my period is generally still pretty painful every month on the first day of bleeding. Long story short its manageable. I'm just really worried about fertility as I really want to have children.

I'm wondering if the cysts are a bad sign and this indicates that my endometriosis is further along?

Any advice would be greatly appreciated.

Many thanks

Claire x

7 Replies

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  • Hi Claire, I'm sure you'll get loads of comments :). I had similar- I had an ultrasound back in September and diagnosed cysts. There was no mention of Endometriosis though until I had a laparoscopy in October. They removed the cysts from my ovaries and found Endometriosis. At first I had no idea what it was so I went home and googled it. OMG. Like you I felt despondent....my periods aren't too bad but I cannot conceive (me and hubby been trying for 4+ years) .God did I cry and shout...I was so so low. I kept thinking why me? I thought I hadn't had any symptoms but looking back I always found sex painful in certain positions. Having cysts on the ovaries well, the ovaries are one of the most common sites for Endometriosis so it doesn't neccesarily mean it's at a severe stage. Some professionals take a watch and wait approach to cysts. However if they suspect Endometriosis the only way to know for sure (and the extent of it) is a laparoscopy. Don't be fobbed off. Get those cysts removed.I've found they're quick to push drugs on us and not quick enough to follow the gold standard guidelines. As for your fertility well over half of ladies with Endometriosis will conceive naturally. It depends where it is and the severity. Hell they don't even understand how mild Endometriosis causes infertility so there's a lot about this disease that they don't know. You need answers sweet. Best way forward is laparoscopy. It's great you've joined this site- there's loads of advice on here. I ordered lots of books about Endometriosis which empowered me. I really hammered home to friends and family what it is and how it affects your life.

    I'm having excision on Monday and hopefully that'll keep it at bay for a couple of years.

    I hope you're okay. You will get over the initial shock of this but don't be too hard on yourself. You've just been told you've got a chronic incurable disease!! Be kind to yourself xxxx

  • Thank you so much for your kind words and for taking the time to write back. x x

  • Hi Claire, hope your ok.

    Have you had a laparoscopy done?

    Fertility is a hard one for all us endo sufferes I myself would also like children at some stage, I have friends who have more advanced endometriosis myself who have very happy healthy children

    I guess it just depends on us all as individuals I know I have to have a consulatation with my specialist if I even want to begin to consider having children x

  • Hi, no i havent had a laparoscopy yet. My understanding was that that was the only way to detect endo for sure, but the nurse said that I had it just from the ultrasound x x

  • That's what I was told and in the end it was the only way mine was detected for certain, but I'm no medical professional so I could be wrong. Hopefully some further tests and treatment will be able to help.

    As others have said don't be too hard on yourself you've just joined the 'endometriosis club' and it's not easy to come to terms with a chronic incurable disease. I brought a book and I call it my endometriosis bible (I'm not religious at all) but it helped me to understand things so much more I will try and find it out to tell you the name it is in my opinion well worth buying.

    Hope your ok xx

  • thank you x x

  • Dear ClaireHandley11

    Below is some information about understanding endometriosis and getting a diagnosis

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    Louise

    Endometriosis UK

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