I'm 18 just been diagnosed with Endometri... - Endometriosis UK

Endometriosis UK
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I'm 18 just been diagnosed with Endometriosis I need some help/advice

Katiee123
Katiee123
6 Replies

When I was 15 I got into into a relationship with a boy and by the time I was 16 I ended up being sexually active with him, I started getting severe pains when doing this, then when I was on my period I everything was just getting more and more painful. I had spent 2 years going back and for the doctors each one telling me nothing was wrong or that I was 'too young', even one doctor had told me to 'go and live my life be positive and come back when I'm older'. I finally had a laparoscopy and got diagnosed with Endometriosis, then got fitted with the Mirena coil. However I still feel so alone, no one has really explained anything to me, it was only the day I was going in for the operation I was even told I was going to be having the coil! Numerous doctors have just left me to research myself and fobbed me off, finally feel like I've got somewhere but then it was still like they didn't want to know. My old boyfriend was so understanding which was so good especially because we were young, however we broke up a year ago now and I have, the past 2 months met someone else who I really like, I have sort of explained the pain but I'm too scared to tell him the pain I get during sexual intercourse and I have been on my period and had horrible cramps ever since I had the coil put in over 2 weeks ago. I have done my own research and read some stories where they have been on for about 3 months which is terrifying me. I have come on the coil to get rid of my periods and its not even likely to stop them! I just need some help and advice as no doctor seems to care and I am clueless to ask doctors questions and I have been left to research Endometriosis and the coil myself.

6 Replies
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Char11

Hey Katie, this is like reading the story of my life! I'm 22 and had a laparoscopy in February. The doctors ignored my pain for so long, scans came back clear and they seemed to think it was all in my head until the operation. Doctors have just left me to figure out pain management myself, they never explained endometriosis to me and the process is so overwhelming and emotional! GPs never seem to want to deal with the long term symptoms and specialists just suggest surgery, it's awful and I totally understand! I would say that what doctors aren't willing to explain you sadly have to figure out yourself. I keep myself sane by googling everything, using online forums and groups on twitter and facebook and this app, being firm with my doctor when my medication has no effect, and at the moment Im making diet changes to see if anything sets me off. I am also really new to this and really clueless and frustrated but doing my own research is the only way for me to deal with this condition which isn't going away. I think so many women feel like this which doesn't make it right but we can support each other. Feel free to message me, take care xxx

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endopains

Give the coil longer than 2 weeks. It takes 6 months for it to sort itself out. I've just started on it too. But im going to persevere to see if it does get better with it. I hear rave reviews. Don't worry about new boyfriend. You dont have to sleep with him until you're ready. My experience is that real men wait and dont pressure you to when it causes you pain. There are positions that are better or worse for it depending where your endo is xxx

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Fabbird

Hi, endopains is right, you need to give the Mirena time to work. It may well be worse at first, but with time it may also stop your periods and reduce your pain. The good thing about it is that the dose of hormones is low, which makes it safer for the long term - so important when your starting young. So if you can bear it, then persist. I nearly had my first one removed, but I'm so glad I hung on. After a few months it was all much better. It has really helped me. I'm now on my fourth! The good news is that in my experience you only go through these initial problems once - they don't happen again when you change the coil. I've found it lasts about three years (not the full five) but I imagine that's individual.

Take care.

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Lou7707

Hi Katiee123

Very sorry to hear all this. If you would like to talk it through with someone we have a team of volunteers on our helpline who would be happy to have a chat.

endometriosis-uk.org/helpline

Louise

Endometriosis UK

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Katiee123

I've read all your comments, its so nice to hear people are going through the same thing! I'm going for a check up in 4 months at the hospital so I'm going to do all the research I can and unload with questions! It's hard as I've never had an op before and never had anything wrong with me so having something I know so little about I find is such a struggle. Thank you so much tho everyone!!

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