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Managing endometriosis: first-person experiences

by Nicole Telfer, Science Content Producer
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Endometriosis is a disorder in which endometrial-like tissue (tissue similar to that which lines the uterus) grows outside of the uterus. Many people struggle with getting an endometriosis diagnosis and finding the right treatment option.

We asked the Clue community about how they manage and treat their endometriosis. Here are some of the responses:

“When I was 19, I developed an endometrial cyst on my ovary. I had always had painful periods, but this pain from the cyst was unbelievable (I thought for sure something had ruptured). My gyno did a sonogram, discovered the cyst, and put me on the pill. However, my gyno didn't tell me anything beyond that! She didn't even tell me that had endometriosis. She just said I had a cyst, and the birth control would clear it up and prevent more. Luckily I knew about endometriosis from my studies, and was able to research the issue myself. I wish my doctor had done more. Anyway, I've been on the pill ever since (~5 years). I can't imagine life without it. But even as helpful as hormonal birth control is, it still just feels like a temporary solution to my long term problems. I wish I had more options for long term care.” - Courtney Lynn @BlondieCLJ

[I was] diagnosed at 32 after 20 years of [abdominal] pain. [I] had a [laparoscopic surgery] at 13 which didn’t pick it up (or it wasn’t yet present), and then didn’t get anywhere with doctors until I struggled to get pregnant in my 30s.” - Elise Kumar @elisekumar

“I was diagnosed at 19 after four years of symptoms. I’m now 32 and had laparoscopy number six last Thursday to remove and treat my endo. I’ve had induced menopause twice [this is called a hypoestrogenic state], but have however managed to have two healthy, beautiful children.” - Ally @Smalldoot

[I] had a unilateral oophorectomy [the surgical removal of one ovary] and was started on Lupron [a GnRH agonist medication which suppresses the cyclical hormone changes of the menstrual cycle] to knock it down to save my other ovary. [I] went from 8/10 pain to zero [after surgery]. If you have painful periods, that’s not normal. See a doctor and don’t let them tell you it’s normal.” - Anonymous

“I was diagnosed with endometrial tissue at my c-section scar area. I was having horrible pain and could feel large painful lumps above the old incision. An ultrasound revealed old blood, from endometrial tissue. Surgery was an option, but timing when that tissue would be visible to the surgeon would be tricky. If they performed the surgery when the tissue was not bleeding and swollen they may not be able to remove it all because they wouldn’t be able to see it. I tracked my swelling (of little lumps) in that area carefully using an app. That way, my surgeon could see the tissue easily in surgery. I ended up not having surgery for non-medical reasons, and the pain and discomfort I was having went away. I now can feel the areas when they are swollen, but am not in excruciating pain, like I was the time I was diagnosed. I barely even notice. You may read scary things online, which may be rare complications (endometrial tissue being found in other parts of the body, trouble reproducing, etc.), but from my experience that information is more scary than the reality. Work with your doctor for the problems you have. They do have options.” - Jen O.

Download Clue to track pain and heavy menstruation, or create custom tabs to track your individual symptoms.

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