Never give up and always advocate for yourself. You know your body better than anyone.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis? I technically started my medical journey when I was 10 by visiting pediatric specialists, but never got an answer, and I gave up eventually. I restarted my journey on September 2020 at the age of 15, and after months of traumatic experiences, I got my diagnosis on April 26th, 2021, but that wasn't the end of it all. What were your initial symptoms? Do you feel they've progressed or...
Hi everyone! My name is Sydney and I am an 18-year-old endometriosis warrior. I live in Connecticut but am from Rochester, New York. I first started experiencing symptoms of endo at age 12 when I got my first period. It took lots of visits and time to find the right doctors but I received my diagnosis via laparoscopy at age 14. This procedure was done via ablation. During this procedure, I was told that I had stage 1 endometriosis and that the majority of it was on my bowels. It took me 2 years to...
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis? I was extremely young when symptoms started, much before my first period which was when I was 11! I was told about endometriosis at 15 when I visited the ER 2 weeks of extreme pain that caused me not to be able to eat. I perused that lead for nearly two years before having my first surgery, which was done by a surgeon who should not have been performing...
At the age of 14 I had my first period and was bedridden. Bleeding through super pads in an hour, throwing up and dizzy. At 16 I had my first ovarian cyst and threw up at the mall where I worked and drove myself to the ER. They gave me major painkillers and sent me home. From 16 on I have had over 30 (known to me) ruptured cysts. I struggled to stay pregnant for years, having nine miscarriages and one ectopic pregnancy. Following the ectopic surgery a dr mentioned endo. Five years later I...
How long did it take for you to receive a diagnosis? How old were you when symptoms started? how old were you when you received a diagnosis? 13 years to be diagnosed I was 13 when symptoms started but by age 19 I was really begging for help I was 32 when I was diagnosed What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with? It initially started with severe pain and heavy periods. I leaked regularly. Then it progressed to more bowel issues....
Medical care has improved, but I often feel out of place in the endo community as a young person.
When I was 16, thats about when I started experiencing endo symptoms. At the time I didn't know what endo was, just that I was extremely painful when my period came around. I was always just told "pain during periods is normal", and I have always had a high pain tolerance so I figured it was fine and I was being dramatic. Fast forward to when I turned 20, symptoms got worse. I started being more sexually active around this time, and it was somewhat painful, but again brushed it off. I got the IUD sometime...
Currently 34 I was diagnosed with endometriosis after a laparoscopy in 2019 and recently diagnosed with adenomyosis in October 2023 I’ve always had heavy periods when I was younger to the point of having to wear adult diapers in high school because I would bleed through my clothes. It got worse in college when I was stressed in school. Migraines and dysmenorrhea were unbearable. A visit to my OBGYNE a few blood tests and an ultrasound later. Everything was normal except for a 2cm cyst found in my ovary. They said it was nothing to be...
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis? I was 12 when the symptoms started and diagnosed at 21. What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with? Horrible pain that ibuprofen would barely touch. And very heavy periods. I would faint and get so light headed. Ever since I’ve learned more about endo I find that what I eat and how and when...
Movement is everything… Even if it’s a quick walk around the house on your worst days.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis? Symptoms started at 15-ish, diagnosed at 20 What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with? Initially I had IBS symptoms . Heavy or no periods. Nausea and fevers with periods. Passing out from pain during my cycle. While my symptoms have been marginally better , I’ve found lifestyle changes accompanied by a wonderful team of...
I've lost my peace of mind. It's like never knowing when I'm going to end up in the ER.
When I first got my period which I got late in life, like 14yrs old. And then put on the depo shot but not because I was having painful periods. So for the majority of my young womanhood and early adult life I never had periods to know. The depo shot was giving me boils so once I became an adult I got off of it and it took a long time for it to get out of my system because I was on it so long. Eventually I just got on the pill. A few...