rpanons | no such thing as too many twinks

no such thing as too many twinks

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don't worry about rambling, anon. i've been pretty rambly about this myself, haha.

i'm glad to hear you eventually got treatment that worked for you! it's awful that it took so long to be taken seriously, but at least things worked out in the end. it's ridiculous how many doctors barely know about a condition as common as endo, let alone how many just wave it off as "eh it's just period pain, that's normal" or "you're just imagining it" even when it's pain way past what's normal and there's clear signs there's more wrong than just that. bc is great for keeping symptoms in check early on, but afaik it doesn't prevent the gradual spread of end and depending on what's affected won't even help, yet way too few doctors actually seem to acknowledge that.

orilissa/elagolix unfortunately isn't approved in my country yet :( i've heard good things about it overall, even if afaik it's not a permanent solution either because of the effect it has on bone density, but i wouldn't be surprised if that particular side effect keeps it from being approved here. i've been hoping for an excision via laparoscopy eventually - there's actually a clinic in my town that specializes in endo-related surgery - but i'd need a referral from a gyno for that, which means finding a gyno who'll actually take me seriously first, and so far that hasn't worked out. i'm making sure to do as much as i can to push for my case (keeping all files and tests from hospital stays/doctor visits, working with my gp to rule out as much other stuff as we can, have been noting down symptoms as they cropped up but will probably move on to full-on symptom journal keeping for ease of tracking starting next week, doing personal research into resources/doctors in my area/country, etc), but there's only so much a patient can do when their doctor refuses to take them seriously.

out of curiosity, since you've been involved with a study and seem pretty familiar with endo in general from personal experience, do you have any ideas for how to handle lower back/possible sciatic nerve endo? i can sort of manage the abdominal pain with heat pads for the most part, but short of pain killers i have no idea how to deal with lower back pain stemming from this stuff and it's probably the biggest problem right now. on most days it's persistent lower back pain radiating down to my right leg when i put weight on it, but on bad days it's insanely hard to walk without support because it'll hurt that badly if i do. i've been considering buying a walking aid (probably a cane) to see if it'd help, but i haven't been able to find much other advice for dealing with that particular issue that isn't just "take painkillers."

Yeah, it's really ridiculous how much doctors will just blow off. Surprisingly the worst treatment I got was always from women. I even had one woman GYN sit me down at 21 years old, and draw me a diagram of how the menstrual cycle works. I was floored.

I'm sorry to hear that! I didn't experience any bone density loss with relugolix (my study medication), but anecdote =/= data etc. etc. either way, I really hope they figure something out soon. Too many people suffer from this for it to just be a shrug. Your first step is definitely finding a doctor to be your ally on this, and it's unfortunately usually the hardest. You're doing everything right, so all I can tell you is to keep on and don't lose hope. ♥

The only thing that got me through my sciatic nerve pain was pain killers, unfortunately. I know there are some stretches that can help a lot, and outside of that, I would recommend taking time to rest when you need to and take hot baths if you can. It's possible that something to assist in walking would be a big help when you do need to be mobile during the flare-ups, but make sure you're using the cane correctly or you can hurt yourself more.

not ayrt but i once told a gyno that i was a virgin at 20.

she excused herself from the room for a moment, very obviously holding back a laugh. i could hear her through the door cracking the fuck up with a nurse. "wow, i have a patient who's still a virgin!"

sex isn't a priority to me anyway but it still made me feel really shitty. maybe she's used to sexually active teen patients but i still thought it was crazy unprofessional. wait until i leave, don't leave in the middle of asking me questions and talk loud enough for me to hear you through a closed door.

big surprise: she was absolutely no help and tried to jam bc pills down my throat even when i wasn't interested. she actually came off as very cranky and uninterested in what i had to say, like i was an inconvenience and not someone who waited over a month to get an appointment just to deal with a shit attitude.

no wonder misogyny is still an issue in tyool 2019 if some of us expect bullshit from people who actually go to medical school for vaginas.

so many people joke that if cis men dealt with menstruation, there would already be a fix by now. i don't disagree.

there is literally nothing wrong with being a virgin at 20. or 30. or whatever age you want to not have sex at. not everyone wants to partake. that's their right, male or female. and when sex can be painful for a lot of women because of vaginal issues, there's just no rational behind it if the party doesn't want to other than 'but everyone does it'.

it's the same as people not wanting to drink and people giving them shit over it. alcohol tastes like shit. the only purpose to drinking is to get drunk. if you don't want to get drunk, there's no reason to drink other than social obligation. you can say no to that.

other rambly anon here

jfc, that's insanely unprofessional of her. used to sexually active patients or not, that's not how you treat a patient, let alone during your appointment with them. i'm really sorry you had to deal with that, anon. :(

"so many people joke that if cis men dealt with menstruation, there would already be a fix by now. i don't disagree."

it barely even feels like a joke these days, tbh. i remember seeing an article recently about how later tests with viagra revealed that it works very well as a temporary period pain relief medication (because of its effects as a vasodilator, iirc), but that research was refused further funding because it "[wasn't] a public health priority" (+ it likely wasn't seen as worthwhile marketing-wise compared to what it's known for now). even if you argue that it's because of the side effects of oral consumption, vaginal consumption avoids most of those, yet afaik they didn't pick that research back up.

the medical field and industry really don't seem to care much about female health problems unless it's breast cancer or something related to reproduction.

what the fuuuuuck

I always had the opposite (kind of?) problem. NO one would believe I wasn't sexually active. the doctors would give me a look, ask again, and just nod like "okay, sure." when I assured them I was a virgin. I even had a doctor who I was a regular at, who knew my (lack of) sexual history, spring a pregnancy test on me before he even saw me in his office bc I was having back pain. Didn't even have the decency to tell me, just had a nurse come out to the waiting room and tell me to go to the labs.

I only found out what was happening when the phlebotomist asked if I was hoping for a boy or a girl.

Having a degree doesn't stop people from being complete, tactless assholes unfortunately.

...wow. that's... special. i guess there's something to be said about sex ed in a lot of places still being terrible and not touching on the way the female body works enough, but going as far as drawing a diagram for a 21-year-old is something else. i think i would've been tempted to file a complaint after something like that.

i'm trying what i can! i'm just. kind of running low on gynecologists in my area to visit. current order of business other than keeping track of things as they crop up is an mri in a few weeks to check on my lower back. i'm hoping there's a chance any endo in that area will be visible on the scans, but if not, it'll hopefully still work as proof that it's not just a pinched nerve or something. this whole thing's been garbage to deal with and is causing a lot of issues with my daily life, but having support from others helps a ton with pushing on.

i'll look into stretches, thanks for the suggestion! hot baths unfortunately aren't an option for me most of the time because of another health problem, but resting is something i'm careful about. painkillers are something i can't take often, unfortunately, so i try to save them only for the really bad 9-on-the-pain-scale flareups. if i took them whenever the pain is bad enough to be a problem with moving around much/leaving the house, i'd... be taking them almost daily at this point. orz

re: canes, though, thank you for the warning! i've looked into guides before when i saw someone mention using canes to help with walking despite sciatic nerve pain, but it's definitely something i'll make sure to get a refresher on if i end up buying one.

Yeah, I was too stunned and embarrassed to even say or do anything other than biting my tongue and getting out as fast as I could and begging for a different doctor.

Unfortunately, since endo is a lot of scar tissue, it doesn't tend to show on MRIs or CTs, but you're right that it should at least rule other things out.

If you can't do hot baths (I can't take them as often as I'd like for my own reasons) then a heating pad or a hot water bottle still helps. I found that sometimes a TENS unit could help, too, but it's another thing you have to be careful about using (and when it's on your back you may need help putting it on) although the Icy Hot smart relief is really easy and good for what it is! I can't believe I forgot that in my first reply.

i can't even blame you for begging for a different doc after that. being treated like that is just insulting as all hell.

yeah, i know endo doesn't show up on those tests often. it's happened before though, so i'm keeping my fingers crossed anyway. the next test should land close to my next period, so there's a chance that if another cyst crops up in the meantime (there's been a few the last couple months), that might show up in the scan. i just hope it's not gonna land on a bad pain day...

i have one of those heatable pillows, but i can't always use it because on bad days i basically can't handle any pressure on my abdomen at all. :( i keep some stick-on heating pads for bad days where i need to leave the house, though. a TENS unit... i've heard good things about those, but the icy hot one doesn't seem to be available here and the ones that are skew a little pricy for me. i'll try to look into it, though, so thanks for the recommendation!

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no such thing as too many twinks

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