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 don’t want this to be an accusation about lemmy’s user base, so take this next comment with a grain of salt:
I feel like lemmy slants male the same way early reddit did, and the same way a lot of more technical communities seem to. I’ve definitely seen threads where the perspectives being shared feel alien and out of touch, and although I’m sure that they have valuable insights about many topics, it does feel kind of… homogenous?
One specific example is the threads arguing about whether to make lemmy more like reddit or not. Often, there are a lot of comments arguing that they don’t want to change lemmy in ways that would make it more inviting, because then more people from reddit would show up. The implication is that the average user of reddit is an idiot or should be unwelcome in some way, but to me it seems that they are just trying to select for men in technical disciplines and who have similar world views to the current user base. Idk, it’s not a great look.
Anyway, I’m non-binary and I don’t have endometriosis so I’m probably not part of the communities you’re looking for… still, I wish you all the best looking for your space. I think it’s truly less homogenous here than it seems… We’ll get more diverse perspectives over time!
-waves nonbinarily (my uterus is homicidal quite often but since I’m not even remotely attempting to utilize it for its intended use, the gyn just shrugs nbd)
That is so infuriating!!! “You don’t conform to gender roles so your reproductive health issues must not be real”
Literally what the fuck
What a dystopian ass society we live in
If you have ungodly heavy cycles, I still have a coupon for 10% off a merula cup if you want it lolol (it’s one of the higher capacity ones)
Just wanted to say that I see you, & that your pain & experience with your periods are valid!! You deserve outstanding treatment and the utmost respect from doctors who are willing to help you, just as we all are, and it saddens me so deeply to know you’ve been offered anything less. Please don’t let practitioners who discriminate impact your view on your experience!! YOU ARE VALID!!!
Thank you so much for responding!! You’ll have to forgive me, I’m currently having a flare up & currently in the midst of midterms, so my energy’s a bit low & my response might not be as thorough as i would like. I don’t want to leave you hanging though; this response was super touching & i’m very grateful for the support <3 <3 perhaps the reasons you mentioned are exactly why i feel so comfortable in this space; the crowd is much more diverse here & i feel like i fit in a lot better here. i see lots of room for growth on lemmy as a whole but i’m very grateful for this space; thank you to everyone on here for existing <3
I found this:
https://www.myendometriosisteam.com/
It isn’t lemmy, and I can’t speak to how it is, as I’m a guy. Might be worth checking out, though. It was recommended from speakendo.com.
Thank you so much for sharing this!! I’ll definitely check it out!! :))
Np, hope it helps.
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.
I can 100% relate while I’m intersex (no assignment at birth, identify as female and have equipment minus uterus now) I still understand where you are at with the amount of pain you are in. I had a hysterectomy several years ago and it made me feel so much better. If you are curious about that process I can expand.
Sending you love and soothing. I’m a non binary AFAB who was diagnosed with endometriosis over 10 years ago via laparoscopic surgery. Endo sucks. I’m coming to the end of my reproductive years, thank fark, it’s been a painful ride.
I have endometriosis. I had all of the endometriosis removed last year and haven’t had any issues since. Getting to the point where it was surgically removed was the worst part. I went through a few doctors before I found one that took me seriously.
I can answer any questions you have on this. :)
If you’re in the US, see if you can get into “Nancy’s Nook Endometriosis Education” Facebook group. I don’t normally recommend Facebook but I was pointed to this group from Reddit originally. Not only will you find a community of people experiencing similar things as you, they also have a list of endo-educated doctors in the US.
There are a few comments on here that I don’t have the energy to appropriately respond to rn (i’ve gotten 8 hrs of sleep in the past 3 days) (22f physics major in the middle of midterms lol) but i just want to say thank you to every single person on here from the bottom of my heart. Truly. Thank you for making my feelings of loneliness & isolation surrounding this experience melt away. Thank you for giving me a sense of community, for empathizing with me, sharing your experiences, & for giving me all of these resources. You all just seem like such wonderful human beings & I’m so grateful for you all. I hope you all have a beautiful day. I’m gonna try to respond individually to everyone as soon as I can !!!💗💗💗💗💗💗
