Endometriosis UK
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Hi everyone I just joined the group as per my GP my symptoms are more likely endo not pcos. Im off sick at the moment as Im suffering from intense pain and heavy period, its unreal. Im waiting for my ultrasound on Friday as Ive done my blood test already. Im just wondering what should I expect? Will i always be in pain like this? how did you guys cope with pain?

thank you!

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Hi,

Sorry to hear that you’re suffering. Pain varies between people & it could be worth having a quick search through other posts as there are lots of ideas.

For me, electrical heatpads, tens machine, paracetamol, codeine & tramadol get me through the worst of it, although I can’t have anti inflammatories due to sensitive stomach, I’ve had them as suppositories and they’re really good.

Progesterone only pills helped me for a while, as much of my pain was when my oestrogen was highest, but it stopped working after a few months but I may try it again in the future.

Keep track of where, when & what the pain feels like so you have evidence of what it’s like when you see specialists. If you see them on a good day, they don’t see the actual effect it has on you, but if you can show them a diary then it can help them understand. (I once went on a good day and felt stupid for ‘wasting their time’ until I pulled out my pain diary and saw that there were only 5 days in 37 when I didn’t have severe pain).

Hope you find something that helps xx

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Hi, Jellykat! Thank you for quick response.

Ive had tramadol and paracetamol as Im still awaiting for the ultrasound. Im so lucky that my GP did believe me because I looked horrendous last week and I didnt have any period for 2 months and the pain is unbearable. I even asked them to sedate me.

Thank you for advice, when were you diagnose? Did you get the minor surgery that I think my GP mentioned, I can barely remember xx

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The gp was probably referring to the laparoscopy, under general anaesthetic they make three small incisions, fill the abdomen with gas and have a good nosey inside. They’ll take pictures, maybe remove some lesions there and then depending on what they see. They’ll sew you up and send you home later that day.

Recovery time differs from person to person, generally 1 - 2 weeks, with left over gas causing some pain in your left shoulder and tenderness in the abdomen.

It’s good that your gp is talking about that as the next step.

What they see is not proportional to how much pain you’re in.

It’s just over two years since I had my laparoscopy, but they couldn’t see anything to remove and couldn’t suggest why I had terrible pains mid cycle as well as period pain, they ended up calling it “endometrial related pain syndrome”, (but if it walks like a duck and quacks like a duck... )

Glad your gp is helpful 😊 xx

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yes thats what she was talking about, my husband was listening to her more than me to be honest, its been ages now, I hope you are not in so much pain xxx thank you youve been very helpful xx

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Hiya! I am so sorry you're dealing with this pain aswell.

I know this isn't what you want to hear but be prepared for a lot of being let down by doctors and gynos! if your US comes back normal then still keep on pushing because they will just try and palm you off! thats exactly what happened to me.

pain wise, it all varies from person to person, different remedies work for different people. I really hope you can find something that works for you!! :) my number one is a hot water bottle. I live and breathe with one, even when theyre cold now lol! pain medication does help but after a while they can become addictive so atm I am trying my best to only take at my very worst!!

sending my love xx

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Hey hun, Im sorry thats happened to you. Hot water bottle lol that used to be my remedy years ago so I dont blame you! but now I know theres something really wrong and Im worried now because I want to have a family soon and it just not happening so Im trying to find a way to get myself sorted. I will keep you guys posted and see how it goes xx

Thank you xxx

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Oh yeah, get the fax numbers of your gp and anywhere you’re referred to... it’s shocking how many letters get ‘lost’ in the post when they’re communicating to each other, for me the only way to get them to communicate was to call each side, give them the others fax number and ask them to send it that way

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Thank you! I’ll keep in mind x

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