Good and bad days: I haven't yet been... - Endometriosis UK

Endometriosis UK

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Good and bad days

JustSomeGirl_ profile image
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I haven't yet been diagnosed with Endometriosis but I'm on the waiting list for a Laparoscopy. I have many symptoms that point to it being Endo. I have an almost constant cramp sensation that a lot of the time means I cannot walk or do anything. I have never experienced pain like this. I vomit when the pain is too intense, I have back ache, I sometimes get a pain in my leg, I bleed between periods (that's a new symptom for me), I've always had irregular periods and I am ALWAYS tired!! No matter how much I sleep.

I just wanted to ask others if the bleeding is really that normal if you have Endo? It happened very suddenly the other day and I hadn't realised until going to the toilet and it just poured out of me. Sorry for details but I was so scared when it first happened as I'd never bled so suddenly and so heavy. Yet my periods are extremely heavy and painful. This was different, it wasn't period blood, it was just blood with a few clots. Again, sorry for details but I just want to understand more about what is happening.

I have researched Endometriosis a lot but I want to hear from people that are actually experiencing it. Thank you in advance for anyone that could help.

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JustSomeGirl_
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emmaquinny profile image
emmaquinny

Hello, I haven't had a formal diagnosis yet either, but have many of the symptoms. Consultant is seeing if the pill will calm them down before a laparoscopy. It hasn't yet but it's early days. I'm always exhausted too, have pain beyond belief and heavy bleeding. I use tranexamic acid which makes the bleeding more manageable, but the bleeding between periods is getting worse, over 6 months changing from spotting to more heavy period days-I usually get abit of warning before it starts to pour out (abit of older blood for example-sorry tmi!) , but today I had really sharp pains and within five minutes I felt the flood gate open. I was feeling extremely low until I found this support group, talking to people who understand and know I'm not just being dramatic really helps. As does reading others symptoms and knowing I'm not alone. It is still however ruining my life and I just want to get back to normal. I hope you find some of the answers you're looking for x

JustSomeGirl_ profile image
JustSomeGirl_ in reply toemmaquinny

If I hadn't been on the pill since I was 12 to try and manage my periods then they would have tried that first. Obviously for me it's not made a difference but I really hope it begins easy some of the pain for you. I hope you're feeling okay after what you say happened. Having this support group is really helpful, I don't feel as alone. But I do still have days where I just want to give up. I don't know how any woman has lived with this for a long time, it's only been since February when the pains really started. Thank you for explaining that you have a bleeding problem too. I was worried so I needed to find out. Hopefully we both get a diagnoses soon. If you ever want to talk I'm always here x

emmaquinny profile image
emmaquinny in reply toJustSomeGirl_

Thanks so much Hun. Same goes for you; I too was on the pill from age 12- 30, and my periods were more manageable so here's hoping. I too can't imagine living like this over a long period of time, and I take my hat off to women who have. They really are survivors- we can do it to, it just won't feel that way everyday x

JustSomeGirl_ profile image
JustSomeGirl_ in reply toemmaquinny

No, thank you. It makes it easier hearing what others have gone through or done to help. Do you do anything to ease the pain? I have a wheat bag that gets heated up and that helps with the intense cramps. The not knowing what wrong with me hasn't helped, I don't know what I can do. Something else I've learned, never let doctors walk all over you. I'm ready for answers and just want to know what's going on inside of me x

emmaquinny profile image
emmaquinny

Yeah I have one of those bags at work or a hot water bottle at home and hot baths which usually soothe if it's just the bad cramping dragging (most days now period or not) , and I use paracetamol, ibuprofen and codine (sometimes tramadol) too. It's worse when the awful stabbing pains in my abdomen, vagina or anus come because they are totally debilitating but subside (thankfully) before any painkillers would kick in. The dr (gp) suggested taking them constantly but I don't want to end up dependent on them-i need some control over it. Hope that helps x

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