I was around 8-9 years old when I first got my period and even that young the pain I had with my periods was awful. I remember I’d cry and not go to school the whole week I had my period. I would go to the ob and they would tell me it’s normal, periods are supposed to be heavy and painful, and to get on birth control. I would dread every month because I didn’t want to go through the pain. Fast forward to when I was 15 I went to the ER for severe stomach pain and they found an ovarian cyst. I had that removed and when I was talking with ob I remember telling him I think I have endometriosis because my mom has it and had to get a full hysterectomy in her 30s and my dr fully ignored me and said no you don’t just take birth control and it will help. My health had declined tremendously since from the age of 19-22. I started having uti like symptoms (pain when peeing, burning, bladder spasms, feeling like I have to per but I don’t) so I thought it was a uti and I would go to the dr and they would tell me yes you have blood in the urine it’s a uti and give me antibiotics. From being on 10 different antibiotics in the span of a year for what I was told was a uti ended up messing my stomach bacteria up royally and ended up giving me SIBO (small intestinal bacteria overgrowth) and that it a whole another story in itself. After I healed my stomach I decided I was going to research and find someone who specializes in endometriosis because I never got answers and I fully believed (and knew in my heart) I had endo and that it was pretty bad. I found an endometriosis specialist and met with her and I told her all of my symptoms throughout the years and how they have gotten so much worse and she told me yes let’s do a lap and see if you have any endo and if you do I’ll do excision surgery. She just so happened to just have a cancelation the following week for surgery and fit me right in. February 2023 after what my endo specialist thought would be a quick procedure turned into an over 4 hour surgery of her cutting out tons of endometriosis that was on my bladder, uterus, pelvic floor, ovaries, colon, and so much more. My endometriosis specialist woke me up from the surgery and told me I was one of her worst cases of endometriosis and that she is so glad I came in and got the surgery so quick. At my post op appointment with her she told me I have severe stage 4 endometriosis and she also told me I might need to look into freezing my eggs because she didn’t think I’d ever be able to have kids because of how bad it was. I’m happy to say I did end up getting pregnant 4 weeks after my surgery and just have a successful pregnancy and welcomed my baby girl into the world December 2023. I’m so thankful I have found such a good endometriosis specialist who actually listened to me and helped me get some relief from the pain. Now I’m 2 months postpartum and I can say my endometriosis symptoms are back and so much worse but at least I know what it is and have a specialist who can help me and there’s so many products that I learned about from Emma (endometriosisem) like the myobi, tens machines, cramp cream and such!
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?
Over 10 years
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Painful ovulation
Heavy periods
Nausea
Constipation
Bloating
UTI like symptoms