Staci, 20
I first started my periods at 11, I remember it like it was yesterday and it was awful… I had these awful “stabbing pains” and irregular periods that would last 5-7 days and sometimes would miss a few, I went on a medication (can’t remember what it was called) and it didn’t help at all.
At 14 kept going on and off of contraceptions, trying to keep my periods normal and regulated as recommended by GP.
Nothing just ever helped my periods, not paracetamol, heat packs, and contraception at that point. I felt helpless. I remember at one time I bled for 7 months straight, heavy and no break and it was awful.
During the ages of 15-16, I was in and out of A&E in unbearable pain, going home with Codeine and Tramadol. Eventually, I was referred to a Gynaecologist.
I’d never really heard about “Endometriosis” let alone a Gynaecologist so I was nervous but just wanted answers. Eventually I met this amazing doctor who managed to give me the answers I was searching for, he told me he wanted to do the surgery.
At 17, I went in and had the surgery. I just remember going in and coming out and being told “You have endometriosis”. I felt relieved and hoped it had all gone and my pain would be no more. I also had the Kyleena coil (IUD) put in.
After a while I noticed my pain was still there so I went back to my Gynae and told him that I was still in large amounts of pain. I went on the Zoladex injections to induce menopause and have been on them for 2 years. I haven’t bled since being on Zoladex but the pain is still there. Although the condition is hard, and at times unbearable, I try not to let it affect my life too much, I think over time I’ve tried to just get on with it.
Maddie, 24
I started having symptoms as soon as I had my first period when I was 14. Over the years, I continually was struck by worsening symptoms of my period. I bled for weeks on end, in agonizing pain, pushing through because I thought I had to. No one ever sat me down and talked with me about what a period was “suppose to be like.” Due to the house I lived in at the time, I was told to suck it up. It took from the time I was 14 to the time I was 17 until someone started talking with me. Even then, it wasn’t until I was 20 years old that my symptoms had gotten so bad that I would struggle to walk because of the 24/7 pain I had down my legs even when I wasn’t bleeding. I went through numerous doctors before one did surgery and confirmed I had endometriosis. However, after that, I continued through doctors because I kept getting on medications that would cause me to bleed. I spent 295 days of 2021 bleeding. By 2022, right before I turned 24, an endometriosis doctor moved to my city. He did surgery on me this year in March. He found that my colon, uterus and pelvic wall were all fused together intensely. So badly, they couldn’t fully separate them. He also found that I was silently loosing my kidneys. The endo is growing on my uterus and bladder as well. I’m thankful it’s not above my stomach; I’m SO thankful the doctor found what he did this year and he took the time to do so. I realized quickly that the surgery I had before we rushed and sloppy. It’s been years of pain, especially ovary pain that I can never shake and worsens when bleeding. Much of that was caused by my uterus being titled and fused to the other organs. I don’t know what steps we’ll take next but I’ve continued to become a voice for endo and am continuing to in my local area. Too many girls and women struggle silently, myself included, because of so many reasons. It’s not normal and more people need to know that. This picture I attached with sunflowers are the flowers that remind me of endo and our yellow support.
Katy, 20
I started my periods at 15, and they were always really painful and heavy; so much that I’d pass out sometimes. I saw my doctor several times and was put on 3 different pills. During COVID, it was hard to be seen by any doctor and I was even turned away from the hospital. I eventually got sent to a gynecologist when I was 18 and had a laparoscopy that diagnosed me with endo, but they just did ablation. At the time I thought this would make everything better. After, I realized that excision is the best standard but is a lot harder to access. So I was desperate and tried another pill, and even medically induced menopause for 6 months this year. None of these have helped and it’s interfering with my university work and quality of life so I’m looking for a specialist that will perform excision.
Kaitlyn, 20
Hi, my name is Kaitlyn, and I started my periods at 12 years old. This is when all my symptoms started. The irregular, painful, long heavy periods. I was told for years this was normal and put on birth control. None of my symptoms got better, instead, they actually got worse. I saw multiple doctors and they weren’t sure what was wrong with me. Eventually, I was told it was all psychological or normal because imaging was clean. When I was 17 I had my first laparoscopic surgery with a regular obgyn and was told I had some adhesions but no endometriosis was found. It was absolutely devastating that nothing was found and part of me believed that it was psychological. A few months after my first surgery my pain and symptoms worsened and I contacted a few endometriosis specialists and found one. He believed me from the start and worked with me and then a few months after that we decided it was best to do another diagnostic laparoscopic for endo. He found out I actually had endometriosis and Interstitial Cystitis.
Lucy,18
My pain was ignored for years by my family. It was only at age 16 when I moved out I was able to take matter in to my own hands. I changed my diet and saw every doctor I could find- only to be completely dismissed by everyone. After a while my family started to believe and support me and it felt like a weight had been lifted by having a team on my side. Together we paid to go see a specialist and I had my laparoscopy! I was diagnosed with severe endometriosis. After years of battling in pain, missing work, school and time with friends I was listened to and understood. I am now 6 months post op and despite being on birth control and changing my diet I still have bad flares and hurt every day.
I wish I could’ve enjoyed my teens.