Endometriosis UK
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Trying to get some support and not feel so alone!

Hi, ever since I started my period when I was 14 I've always had really severe pains, I went on the pill which didn't manage much for the first 7 years. I spent every month in the doctors explaining how much pain I was in and felt I was ignored. It was getting to the point where I had to plan my periods to start on my days off using the pill so I didn't have to get out of bed, or risk having to phone in sick because I was in so much pain I could barely walk. I moved house and went to a new doctor who referred me to a specialist straight away. I went for scans on my ovaries and all clear, but was told I had the symptoms of endomitriosis, they would not put me on a waiting list for a larascopy as this was a 2 year wait and because I was 22 and very young. I changed my pill and this managed my pain better and stopped my periods after 6months of constant spotting. But then randomly, i woke up at 3am and ended up in a&e because I passed out in pain. This has happened 5 times since the first (in nearly 2 years) but hasn't resulted in a&e as unfortunately it's become a "normal" thing. I went back to my specialist who recommended me getting the mirena coil. I was open to the idea but when I tried to get this fitted, it got to the point where they apply lubricant to the womb to insert the coil and I almost passed out from the pain so decided not to go ahead!

I was referred again to the hospital where a Dr advised me to try the coil again with a local anesthetic. Which put me off, as to me, my body had already told me no!

I was asked to give this a go before being referred to get a larascopy, but it freaked me out and annoyed me. I've been trying to get help for 10 years (I'm 24 now) and feel like they're trying to deffer my problem another 5 years by fitting the coil!

I was open with my partner and made it clear that I didn't want the coil, because that means waiting 5 more years for the possibility of children and to find out wether that is even possible.

Instead i freaked out and came off the pill in May to see how my body is without added hormones. I have noticed my periods have become more irregular but much lighter and less painful. Has this happened to anyone else?

6 Replies
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I can relate with the reluctance to have a lap as I was in so much pain before this new pill and they told me I was only 20 so they wouldn't consider it, which was a bummer given I need an official diagnosis so work can reduce my hours. And for me, after not having the lap, I was told by them I HAD to be on some sort of birth control to try and reduce it, so I chose to stay on the pill, though in the 3 months or so I came off it my first period was non existant and the next 2 were excruciating!

And I'm in the exact same place with the coil, they told me if they pill doesn't work then I have to try the coil before they'd even consider me for a lap, I feel like I'm just going round in circles with them!

Let me know how you get on, I'm here if you ever need to vent x

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It gets me so upset, it's affected my mental health because I'm so worried about the future, I feel if I had a diagnosis it would help alot, I think I'll just keep pestering for the larascopy! My mum thinks I should go private and get a second opinion!

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Yeah I feel you there, uncertainty about having kids or keeping a job doesn't help and my mental health has gone to pot, plus constantly changing pills doesn't help either does it? Private can be a lot of money but if you feel like you're waiting too long then by all means go for it x

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I whole heartedly support getting second opinions, whether that be from other NHS doctors or private health care. When I first started down the road to diagnosis, I spent about three months with doctors telling me that I had STIs before I hit on to someone who believed that neither me nor my partner had been sleeping around. It was ridiculous, but I had to keep pushing and so do you! Xx

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Hi there, I'm sorry to hear that you've been through such a traumatic time! I've been on the pill since I was 13 due to heavy, painful periods. I'm now 21, I was diagnosed with endometriosis through laparoscopy just over a year ago, at first they told me to take my pill for three months in a row and then to have a break, the break was so painful it was unbearable so I decided not to take a break then next time. I went back to my gynae who then recommended the mirena coil, which I was open to. I got this fitted nearly two months ago and yes, it was the most painful thing I have ever experienced and I did pass out, for the following 48 hours it was almost as if I was having contractions, it was agony. I waited a few weeks and the pain was still there but a lot of people told me to hang in there and two months on, it has helped so much. If you do think you could get over the initial pain, it may be worth it. I hope my post has helped

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Thanks for replying, I think I've maybe got myself in such a mess over it all that I'm literally scared of the pain now, I just want to avoid it at all costs! Haha. Going to wait a few more months and see how it goes and if my periods become regular again without any extra hormones! See if the pain gets any worse (which im praying it doesnt) Then maybe pester my gynae again..my mum suggested going private so that's also an option for me. I just want a nice easy stress and pain free life. Too much to ask I know haha

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