Anyone else with Endometriosis?

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- farahziya
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Anyone else with Endometriosis?
OP - December 06, 2017, 04:02 PM

Topic that some readers may fine horrible / too detailed - right, so I'm quite happy to discuss body goings on, health, reproduction e.t.c. as they're all part of ourselves to understand ourselves is to be happy.

So Muslim families do not discuss health issues let alone "women's stuff"; I've been suffering with heavy periods, random pains, headaches, feeling dizzy, faint, nauseous and tired, for about 15 years. When I've mentioned it to my mother as I was growing up I got the response of "It's okay, it's what us women go through", as they don't discuss female health - I didn't even know what a period was until I started and I thought I'd done something wrong or bad. That thinking about boys or sex causes spots, breasts and you'll be a sl*t just for thinking it - so anything to do with female / male is not discussed even tampons, pads, hairs and shaving.

I left home and found out myself that what I'd been going through is not normal; to add to it sometimes if relatives have problems I could have too; well it would have been nice to have been told rather than thinking I was alone, in pain, and that I was just weird and I should just cope as it's part of being a woman.

I am happy to talk about everything body-wise as I have no hang ups.

I'm recovering from a laparoscopy where they diagnosed and removed a lot of severe endometriosis. Which the doctors are surprised I've managed this long without help. I have a very supportive partner which is great. We're now coming to terms with that it's an ongoing disease and there's no cure. But I finally have a diagnosis after all these years - we together will get through this - it is emotional not just physical.

Anyone else have endometriosis? I'd like to find people with a similar story
- PeruvianSkies
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- La Illaha Il al FSM
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Anyone else with Endometriosis?
Reply #1 - December 07, 2017, 08:40 AM

Our lack of discussion regarding health is so fucking stupid isn't it? You end up going through everything alone, and then when old enough to see a doctor yourself you don't even think about discussing 'irrelevant' details like pain until it becomes too much.

I'd never heard of endo until now. I actually had many of it's symptoms but I went on birth control years ago to stop the heavy bleeding. Even the biggest pads were not enough for me, and I still went through several a day. I remember telling my mum about heavy bleeding but she said it's normal. I used to lie there on the sofa in front of her in so much agony, but no one pointed out that it was abnormal. Next time I see my gp, I might just ask about it. But at least with my birth control, I don't have periods at all anymore.

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Which the doctors are surprised I've managed this long without help. I have a very supportive partner which is great. We're now coming to terms with that it's an ongoing disease and there's no cure. But I finally have a diagnosis after all these years - we together will get through this - it is emotional not just physical

I've been through all of this for my cystic fibrosis diagnosis. I have a milder version of it thankfully, but it's still been a horribly emotional ordeal. My partner and my closest friends help me get through it all now

What treatment do you get for endo?

~My story~
~Collection of unethical hadiths/surahs~
- farahziya
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Anyone else with Endometriosis?
Reply #2 - December 07, 2017, 09:06 AM

Wow good to know it isn't only me that feels this way - I do feel for you, it must have been awful

I would suggest if you feel something isn't right get checked; mention it, and do it as soon as possible; we all are known for putting it off, there's no time like the present. If you've been on the pill for heavy and painful periods it will stall endo or any other hormone dependent problems for a while. Other things to consider are fibroids and polycystic ovaries (PCOS). Endo is as common as diabetes in women - 1 in 10. Unfortunately it's diagnosed later in life when women realise they have problems conceiving, intense pain and irregular bleeds (inbetween periods) or heavy bleeding (mine was pads and tampons often for 7 days or more about three times a month)

Definitely worth keeping a diary of pains, bear in mind this can include at any time of the month:
abdominal pain (if endo is sticking organs together)
bloating
frequent urination (if endo is on the bladder)
digestive problems (if endo is on the colon)
bleeding and spotting that is not normal
headaches
back pain
dizziness
feeling sick
tired or feeling exhausted
recurrent infections (colds, uti, upset stomach)]

The only way for a confirmed diagnosis is laparoscopy, which I suggest going for - it is still an operation but if it helps to see what's wrong then it's a step forward it can also be used to do a health check of reproductive organs. If you have insurance to be referred privately or pay on your own go for it - they will take the extra step and remove what they can if they see any in one operation. That's what I went for. Also less waiting time; I went from consultation to op in less than a month.

Fibroids and PCOS they can do an ultrasounds both the normal stomach one and an internal (scanner up the vagina); it feels like a smear test.

Bear in mind if it is that, it is a disease, it will either stay the same, or get worse, and there is no cure, treatment (surgery / hormones) and getting to know your body is best. But we endo sisters can help each other
- PeruvianSkies
- Ex-Muslim
- La Illaha Il al FSM
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Anyone else with Endometriosis?
Reply #3 - December 08, 2017, 07:48 PM

Thanks for the info. I haven't had any symptoms since getting the coil thankfully. My sister has PCOS though, she had to get hormone therapy.

Quote
Bear in mind if it is that, it is a disease, it will either stay the same, or get worse, and there is no cure, treatment (surgery / hormones) and getting to know your body is best. But we endo sisters can help each other

I already have a chronic disease so I know the feeling. You learn to accept it eventually. It really is a shock to realise how mortal you are.

~My story~
~Collection of unethical hadiths/surahs~
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