Answers please: Can someone please help... - Endometriosis UK

Endometriosis UK

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Answers please

Rachel20 profile image
12 Replies

Can someone please help with some advice or answers.Do you need to be anemic to have endemetreosis

Also do you have to loose clots that are as big as your fist to be deemed to have endemetreosis .Does clot size matter at all

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Rachel20 profile image
Rachel20
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12 Replies
Lindle profile image
Lindle

No you don't need to be anaemic or have clots to have endo. Endo is a very complex disease involving abnormalities in immune and endocrine function and other irregularities that we don't fully understand yet. Some with endo do have heavy clotty periods and can be anaemic as a result and while this may be quite common there are others with endo who don't experience this. At the same time there are many with heavy periods who don't have endo. They might have adenomyosis or fibroids or there may be no cause identified. Abnormal periods can also be caused by hormone imbalance which is a characteristic of endo but again others can have hormone imbalance without having endo.

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Rachel20 profile image
Rachel20 in reply toLindle

thanks for the info Lindle..its much appreciated.Just have so many questions now after gyne appointment.I dont suppose it matters though as i havent been offered a lap as deep endo isnt there.I have had an uktrasound and internal exam.But i have had contradictory info since my gyne appointment.Especially about sciatic painThank you so much again.

Lindle profile image
Lindle in reply toRachel20

With a clear scan the pathway is now to offer you medical treatment or a diagnostic lap at your choice (ESHRE Feb 22). Feel free to message if you need more info on this.

Rachel20 profile image
Rachel20 in reply toLindle

i have been thinking of saving and having a pelvic and back mri

Michelle_2022 profile image
Michelle_2022

no & no 🙃

Kinder_Cat profile image
Kinder_Cat

Bit redundant maybe, but to echo others definitely a no to both questions. Will also add I do have deep infiltrating to the point of losing parts of intestines and multiple laps elsewhere and it was only picked up via lap and MRI, all other tests missed it. I had horrific pain but clots where not that big at all most the time and no anemia. In contrast a woman on the ward the first time with me had gone through it all with the "traditional" symptoms, had the lap and was told there was no endo. Lindle is so right that it varies so much person to person. I don't want to dishearten you, but this illness has been a real eye opener for me that it is so different for everyone and that some medical professionals will so easily dismiss you as not having it and others will be quick to put things down as endo and move on when actually there are other possibilities it may also be.

Rachel20 profile image
Rachel20

thank you.Just wanted some clarrification after my gyne appointmen.Lindle has wonderful info.I just felt as if i was being dismissed as if it wasnt that bad.Yet it really is.Thank goodness for all the ladies on here, giving advice.It really is so important as medical professional knowledge differs so much.

TogetherWeAreStrong profile image
TogetherWeAreStrongModeratorEndometriosis UK in reply toRachel20

thank you Rachel20 to you for your valuable contributions, opening of discussions and allowing us all to see how this condition affects people differently, I also agree with you, that the advice given here is invaluable as medical professional knowledge does differ so much.

Lindle , Michelle_2022 and Kinder_Cat goes without saying, but I will anyways, thanks a million for sharing.

Rachel20 profile image
Rachel20 in reply toTogetherWeAreStrong

Thank you so much for your reply.This forum must of helped so many women.We are stronger together.And thank goodness for that

Stitchrunner1 profile image
Stitchrunner1

I am not medically qualified. This is only my experience. My message to you is; Don't Die of Shyness. Tell your doctor everything. Frankly and bluntly. Doctors are not subtle. They do not understand hints and innuendos. Speak up and Speak loud. Never, ever be afraid to ask stupid questions. When you get blood results, ask what they mean. AND go for your examinations. Doctors look in places no one else dare look. Just get on the bed, look at the ceiling and think of whatever you like. Don't make assumptions about having endometriosis. There are lots of reasons for clotting and anaemia. Every woman who is brave enough to speak out about their periods and their issues, helps break down the barriers. So please. Get check and do not take no for an answer. Keep on nagging. You may save your life. I hate intimate exams but as one doctor said to me "you have no problem letting a dentist examine your teeth. This is just a different bit of the same body." Best of luck.

TogetherWeAreStrong profile image
TogetherWeAreStrongModeratorEndometriosis UK

endometriosis-uk.org/suppor...

We are here for you, as you are for us, sharing, face to face is very empowering, please look at your local support group if you think you would like to explore this option👍

Rachel20 profile image
Rachel20 in reply toTogetherWeAreStrong

Thanl you..so kind.Such a wonderful forum.A place where we all can turn

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