Endometriosis UK

Recently diagnosed

I was recently diagnosed with endometriosis after years of suffering with what I thought was normal pain. Had periods that could last over 2 weeks, be so heavy I'd bleed through a tampon an hour and the most excruciating cramps that sometimes caused me to faint or vomit and I'd always be doubled over in agony and no pain killers could touch the pain. I thought this was what having a period was and I had to suck it up.

Last year I started getting period like pains constantly regardless of whether I was on or not. Sometimes they were just a dull ache and others times I'd feel like I was being stabbed in the abdomen and was in agony. I also started to feel tired constantly and when my period came on my bladder would be really overactive for the first few days which I'd never had before. It felt like I was going to burst if I didn't pee every 45 minutes to an hour. Making the journey to work which is under an hour could be bladder agony as by the end I'd be crossing my legs so tight and praying not to wet myself as well as suffering from hellish cramps. I'd usually have to run straight for the loo as soon as I got off the train. As soon as the first few day of my period were over I'd stop feeling the need to desperately pee constantly. My periods were constantly heavy and even more painful than before. I'd literally be lying on the bathroom floor curled up in agony and crying for at least 20 minutes and sometimes hours including when I was at work. I finally caved and went to the doctors. After lots of tests, scans and a lap endo was the verdict.

In October I was told to start taking the pill on my next period to try and ease my symptoms only problem being I haven't had a period since October so haven't started. My cycle has always been erratic not helped by some stress I'm also under just now. I can go a few months between periods, have 2 in a month, have a 3 week long period or just be regular. My cycle does what it likes! However the daily pain is getting worse. I constantly am cramping, going through naproxen pills as they are the only thing that works a bit and have to sit at my desk at work with a hot water bottle which is embarrassing. Today is the worst it's been. I honestly feel like I'm dying from the pain. I can't sit, stand and have been sick twice. Have been curled in a ball or bent double most of the day and now night. Am going to phone doctor on Monday but what can I do to help this pain?

3 Replies
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I'm currently waiting for a diagnostic lap but everything you've written was me, I say was because 2 months ago I was put back on the combined pill and it has reduced everything massively. Because I take it back to back at the moment im yet to see what the next period will be like but im dreading it.

I currently have some bowel and upper abdomen issues which could possibly be from previous abdominal surgeries so it's hard to say if related yet but could be.

I would go back to the doctors, talk about what to do regarding the pill and have a review on pain relief. There seems to be a wide variety and hopefully you'll find something that makes you more comfortable.

Did you have any endo removed at all, maybe that will be something to consider.

Hope you start to feel better soon x

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Hi first of all I'm so sorry your in so much pain sounds like you are having a hard time with it. I have my lap on the the 8th of Feb. Counting down the days . I feel a lot of the pain you do. I am In pain every day with period like pain even if I'm not bleeding it's there. I have the urge to urinate all the time to. Did they treat your endometriosis via the lap? Also as your symptoms are like mine can i ask where the endo was found?

As far as pain Meds I am on full amount of cocodamol paracetamol and tramadol and I'm also still in pain. They are going to fit me with a coil when I have lap they said this would help .

I hope you find something that helps with your pain take care xxxx

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Hi thank you for your replies it's reassuring to know I'm not the only one experiencing this. To answer your questions endo was found on my liver, ovaries and bladder and yes some removed. I was almost pain free for around 4 months but then it began creeping back and now it's as bad as it ever was. Have a docs appt later this week that can't come quick enough as the cramps have not eased off and are still absolutely agonising. I've taken some codeine and that has helped a bit combined with clinging to my hot water bottle. I hope you ladies find some relief soon

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