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orangeblossom

Updated 1y ago

Fear of Diagnosis: Seeking Advice

hello! i have not been diagnosed yet but i fear that i will be this month. my mother had it and we believe i do as well. could anyone share how or what they felt that made you want to look into your symptoms more and led to the diagnosis?

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Spencer25

2y

I haven't been diagnosed either but i Definitely know I have it I changed my whole diet and it changed my whole life because certain foods flare up endo
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orangeblossom

2y

ooh do you have some examples?
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jamin90

2y

I was diagnosed and got surgery 2 years ago this August. My periods were so bad back when I was 16 I was almost passing out. My mom put me on birth control and later told me she had endo in her 20s. So my symptoms were mostly my periods. They were heavy, black blood, lower back pain, extreme nausea, dizziness if I hadn't taken pain killers yet, taking 6+ pills a day during period, 7 day long period, bad cramps that made me freeze but I couldn't be sitting down either and if I was then I had to hoist my butt to hover over the chair until it passed. Even though I was 90% sure I had endo at 16 I wasn't mentally ready for surgery and recovery until I was 20. The birth control actually helped quite a bit (less days bleeding) and surgery made my periods 100x better. Now I just take 1 pain killer for the first 2 days and the last 2 just chill. It has cut down on the bleeding, pain, just everything, and now my blood is red instead of black! But I had to fight tooth and nail to be heard by doctors. The local place just kept saying yeah what do you want us to do? And I just wanted anything to help. I found a specialist who heard my symptoms over the phone and asked why I hadn't had an ultrasound yet. You are your biggest advocate. Do not be silenced.
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orangeblossom

2y

definitely! I am super big on never letting it go if you're in pain or highly concerned about something. Doctors don't want to believe anyone, especially women, when we say we're in pain cause they believe we have no pain tolerance. I'm glad you were finally able to get diagnosed and treated!
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BusyB

2y

I was diagnosed 3 years ago when I had a chocolate cyst removed and it was diagnosed as endo. Another lump showed up and I had to have a hysterectomy and lump removal, but they got everything out so very little to no pain now!
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orangeblossom

2y

I'm so glad you have less to no pain now! I'm concerned about a cyst that a doctor found on a CT scan last fall that I didn't find out about until this past week because I've had recurring pain in that spot. Getting checked out this coming week!
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Kiki_Kiwi

2y

I was diagnosed last year. I always had very painful periods since i was 10 but I thought that was normal until it got worse. Last year me and my boyfriend noticed that all of our pregnancy attempts were absolutely failing. I explained everything to my doctor and that’s how I was diagnosed.
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Mop

2y

I would start having terrible cramps about a week before my period, the period would last more than a week, and then I would continue to have terrible cramps for about a week after I stopped bleeding. So I was nearly in constant pain, but I thought it was normal and I just had a low pain tolerance. One time the pain was bad enough to cause me to faint and throw up, so my mom asked my if I had any clots in my blood and took my to women's health right away when I described how big they were (which I also thought was normal) that's my diagnosis cause story.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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