Pain and Fears

Hello Everyone! This is going to be pretty long so please bare with me.

For reference I am 23 years old. I guess I’m maybe making this post for some comfort or advice. I have severe health anxiety but I’ve just never been as sick as I am now so I’m very freaked out.

I’ve had suspected endo for years now, i guess it was just never “bad” enough for them to ever actually go in and look for it. My mom has it and her mom had it. I was put on birth control from the start of my periods at age 11 because of how heavy they were, but went off of all forms at the age of 19 to give my body a break. I was finally able to get into an endometriosis specialist when I bled for 2 months straight this past March and ended up needing 2 blood transfusions (I also have Von Willebran Disease). While I was bleeding I was put on Norethindrone which I feel personally made the bleeding worse at the time, the doctors kept increasing my dose until I hit 20 mg and the bleeding finally stopped. My periods have pretty much always been ultra heavy and I also experienced clotting but they had gotten worse over the last year and the clots had gotten bigger as well as my periods getting longer.

Anyway, something I had also experienced on my periods for years was horrible leg pain and pretty bad cramps either right before my period or in the first few days. Now, I’m in constant pain daily and the leg pain is so bad along with bad pelvic pain, back pain and hip pain. It hurts to go to the bathroom both ways most of the time, which my doctor suspects me to have both bowl and bladder endo as my mom and grandmother did. I’ve been on Norethindrone since March but about 4-5 weeks ago they decreased my dose from 20 mg to 15 mg since the bleeding had been controlled for 2 months and of course I’ve had constant spotting since they decreased it and worse pain since. I do have a laparoscopy and hysteroscopy D&C scheduled for July 20th.

I guess what I’m asking is it normal for endometriosis to just get so worse all of the sudden? Could I be feeling worse because of the Norethindrone? Could this be something super bad like Uterine cancer and that’s why my periods got longer in the past year? My grandmother had stage 3 serous caricnoma of the uterus post menopausal so sometimes that freaks me out. My last ultrasound was back in October when my periods started getting really long and that was normal. I of course had several pelvic exams the last couple months and a Pap smear done, they felt my uterus for any masses or abnormalities and everything came back normal. My endo specialist is confident all my issues are related to endometriosis but I on the other hand am so scared that my daily pain is so bad and it feels like something has to be super wrong. I realize I’m young but nothing is impossible. Of course I’ve done the worst thing I could and looked up stories of people with Uterine cancer to see that their symptoms match up to mine. I’m so scared they are going to go in there and find something besides endo. Not that endo isn’t serious on its own of course.

My biggest dream has always been to be a mom and to experience pregnancy, sometimes I feel like it’s being ripped from me by the second. Maybe I’m jumping the gun, I just don’t know how to feel.

Anyways, I’m sorry this was so long. If you’ve read this through I love you and thank you for listening 🫶🏻. If anyone could provide any words of advice, similarities or just their story, I’d be happy to hear it all. Thank you 💜.