Hello! My phone’s on 5% so I’m typing really fast right now; apologies for typos &/or poor grammar! I deleted reddit when the protests happened in June/July (??) & switched over here to lemmy. I suspect i have endometriosis and I used to love the endo communities on reddit, but i no longer have access to that & i’m just feeling kind of alone i guess …. So far, I’ve felt the most at-home here, which is why I’m posting this here, and I’m just curious to know if there’s anyone on here who has a uterus & either suspects they have endometriosis or has an actual diagnosis. I have a consultation lined up later this month. I’m just in a lot of physical pain & i don’t want to feel alone right now. I keep trying to find communities here on lemmy where it’s appropriate for me to talk about this stuff but it’s all been to no avail. Sorry if this isn’t allowed. Thank you for reading :,) <3
TL,DR: i think i have endometriosis and i don’t want to be alone, so I’m desperately searching all over lemmy to find people who understand me & relate to my experience
I have polycystic ovary syndrome PCOS not Endo, but I share some of the pain. It caused me to miss so much school that I was at serious risk of being held back despite having high grades in high school. As an adult, I frequently use all my sick days just to cope. Last year my new gynocologist finally took me seriously and realized that I was not just over exaggerating. Since I had very high blood pressure on the combo pill, we decided to try the IUD instead ... I had it placed 3 times! Each time, within a week or two, my body expelled the IUD on it's own.
Anyway, we gave up on the IUD because it wasn't working. Instead she put me on Slynd (drospirenone) a progestin only pill. For some people it stops menstruation completely, and I was lucky enough to be one. After 19 years of pain, I've finally had 9 months of feeling great! I don't have those stabbing knife pains in the middle of the month when I would get cysts. I no longer get anemic from blood loss or have 7-13 day periods with cramps that feel like I'm in labor. I don't have a period at all!
I know that I've read stories of women with Endo who say they've had success using birth control to stop their cycle which stops the Endo tissue from growing each month.
The slynd is prohibitively expensive if insurance doesn't cover it. However, there's another progestin only pill that is coming out next year in the US that will be over the counter and supposedly affordable. That med is called Opill (norgestrel).
Sorry for the wall of text. I just want you to know that I feel for you and you have my deepest sympathy. It sucks trying to get a diagnosis for reproductive pain, and please don't ever let them wear you down. The pain is not normal and someone should be doing something for you about it! I hope your upcoming appointment goes well and you get some relief soon.
Another option to consider would be the Depo Provera shot. Without insurance, it would be about $60-70 every 3 months, but I don't think there's an insurance plan that doesn't cover it. It doesn't contain estrogen and is a common treatment for dysmenorrhea and endometriosis.