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No. 2012359
This thread might belong more in /g/, but I like the concept.
>>2012341What are your diets like anon? I was having symptoms a lot like PCOS getting progressively worse over time, hormonal acne going crazy and huge lumps in my breasts that felt like they were going to explode, then I cut all sugar out for a month and the symptoms went way down. I was never eating a ton of sugar like a lot of ppl but clearly it was fucking me up. Then I went vegan and it got even better, now I only have mild tiredness on the first day of my period and I feel great all the rest of the time.
No. 2012563
>>2012359I started this thread in off topic because chronic illnesses are not really related to female socialization. Although some chronic illnesses only / discriminately affect women, anyone can get a chronic illness. I was posting on Reddit about long covid and ME/CFS but I’ve realized some moids are deliberately spreading despair and fear amongst chronically ill people and taking a pleasure from their pain.
Anyway, I’m glad anons are posting on this thread.
No. 2012658
>>2012565I have a condition that’s been co-opted by troons, pcos, I don’t appreciate my messed up biology being used to justify their messed up brains and inability to respect boundaries. It’s very disheartening to seek support and confirmation of symptoms and just find a bunch of self congratulatory morons calling me a man because I have to shave my face. I imagine it’s the same for you, a bunch of narcissists seeking a supply.
Are you worried your doctor will think you’re a munchie and drug seeking? You should try talking to them if you need support, don’t let your treatment be neglected because of morons if you can.
No. 2012723
File: 1716327309288.jpeg (26.77 KB, 480x480, gang sign eds.jpeg)
>>2012565yes! I was diagnosed with joint hypermobility syndrome at a very young age back in the 90s because of pain and injury, and since then a rheumatologist "upgraded" it to hEDS, based on my symptoms. I actually downgraded it to joint hypermobility syndrome because I think doctors respond better to it, especially in relation to chronic pain.
I never mention it to anyone in day to day life because it either
triggers people who don't believe it's a serious thing or, like you say, it will attract munchies who "think" they have it too.
which type have you got and how does it effect you nona?
No. 2012740
>>2012658nta and i don't have pcos but i have noticed deluded transvestite males comparing themselves to women with pcos on many occasions. classic insensitive and
clueless male behaviour. it fills me with rage tbh i can't imagine how angry it must make you.
troons have sort of overtaken EDS spaces too, since there is a huge autism comorbidity overlap. more FtM and enbies though. it breaks my heart sometimes because this condition is harsh enough on the joints and bones, without giving yourself osteoporosis and pelvic issues from hormones on top of everything else.
No. 2012745
File: 1716327922357.png (59.18 KB, 597x308, Beighton_Score.png)
>>2012735nope! most people can't. it sounds like you have hypermobile wrists. a lot of people have one or more hypermobile joint, so maybe that's the case for you but there is something called a Beighton test, and the higher you score, in combination with symptoms (like joint pain, fatigue etc.) the more likely it is you have JHS or EDS.
No. 2012781
>>2012658I don't bring it up mainly because the treatment for EDS is the same treatment as someone who would present with the same issue not caused by EDS. The only benefit would potentially be an insurance claim. I do tell doctors when it is relevant, such as when I am going in for surgery.
I suppose I mainly avoid it as I found some doctors tend to write me off as a hypochondriac.
>>2012723I tell people I have hEDs for sake of simplicity, but I have a type that is a bit abnormal in its presentation. I am currently part of a genetic study as every woman in my maternal line has been affected by it in some way. My main joint problems are that I have chronic tendonitis in my elbows going on five years now. The discs in my neck have a tendency to slip out of place but immediately slide back in, it's sudden and very painful. And in addition I have hip and lower back problems that have begun to develop as well, it makes exercising very hard for me and PT has been minimally helpful. The most bizarre presentation has been how it has affected my period which I don't see many people online talk about. What about you nonna?
No. 2014203
File: 1716377416146.jpg (80.06 KB, 1200x574, chronic-infection-website.jpg)
Oh wow thanks for this thread.
I have a fucking chronic UTI. Have had it for 3 years. During most of those 3 years I've been in pain 24/7. It feels like I'm pouring acid on my vulva all day every day. At some point it was so bad I wanted to die. If I didn't have anybody in my life I would have definitely looked into assisted suicide. I rawdogged this shit for like 2.5 years because not a single doctor offered me pain meds or told me I could get help. I just assumed there was nothing they could give me since they never offered anything. I finally went to a chronic UTI specialist 3 months ago and finally have some relief, actual treatment, and a diagnosis. 3 years of playing guess my illness with these shitty doctors has cost me so much time and so so much money.
Never let a UTI go untreated nonnies. Don't be stupid like me.
>>2014102It really is like that. I've had to put my life on pause. No friends, no relationship, no studies, no self improvement, barely any involvement in my hobbies. I would also stop working if I could.
No. 2014204
>>2014102You’re welcome nonna. I developed long covid after catching the virus in 2022 and I watched my friendships fizzle out during the past two years. I kind of understand, it’s hard to stick to plans when you don’t know how you’re going to feel next week or next month. You take it one day at a time. But it’s hard for people to understand to they eventually stop calling or inviting.
I stood by a friend during her chronic illness journey and she ghosted me, then came back with a surrogacy baby so I’m not even sure if I want to continue being friends anymore.
I have a friend who goes through PCOS and she understands.
No. 2014208
>>2014203Anon I am going through the same thing besides long covid. I’ve spent the evening in pain on all fours. I feel like this is a divine lolcow intervention, please tell me more about your journey.
Cranberry supplements don’t work anymore, uromune vax isn’t available in this country and I’m planning to bring low dose (100mg) antibiotics from overseas because the doctors only prescribe antibiotics and tell me “women just get them more frequently sorry”
No. 2014231
>>2014208I also got this after covid. I've always thought it was related, like covid fucked up my immune system or something. I'll give you all the help you need
nonnie.
I'm now seeing a specialist at the Harley street clinic in the UK. There are some specialists in the US too:
https://www.chronicutiinfo.com/treatment/ The treatment they give you is long term antibiotics and Hiprex. I'm on 1g Cephalexin + 1g hiprex twice a day. It's been helping a lot, I noticed a big difference right after starting the Hiprex. It's OTC in some countries so if you can you should get it.
https://www.chronicutiinfo.com/treatment/conventional-medicine/hiprex/ This clinic also does online appointments and works with doctors from your own country if they are willing to follow their instructions. You would need a doctor willing to do a urine microscopy on a fresh non-midstream sample, where they look for white blood cells and epithelial cells. If you have any, it means you have an infection. Be sure it's done correctly tho, if it isn't done soon after you give the sample, it will be negative.
Some things I've done to help with the pain is taking antihistamines/quercetin supplements and doing a low histamine/bladder friendly diet. Felt immediate relief after taking an antihistamine one day, but I now prefer the quercetin. My doc has also prescribed me amitriptyline so we'll see if that helps. There's some other supplements you could try:
https://www.chronicutiinfo.com/treatment/complementary-medicine/. This girl on tiktok also has a CUTI and she posts a lot of information about it and often does live Q&As:
https://www.tiktok.com/@chronicutifiles I've had the strovacc vaccine and it didn't work. I asked my doc about Uromune and he said it wasn't very good and that lots of his current patients only got temporary relief from it, so don't stress about it.
No. 2014858
>>2014280Aww you're welcome
nonnie. I always try to help other women with this godforsaken condition. Every day I pretty much post the same thing on the CUTI and vulvodynia subreddits. So many women with this get told it's interstitial cystitis or vulvodynia and get sent away with some crappy lyrica or gabapentin that barely helps. Women literally kill themselves over this condition and barely anybody cares.
>>2014283I was pretty healthy too. Whenever I got UTIs it would last 1 day and then go away on their own. I didn't even know they were UTIs. But this one started super bad and never cleared. I hate myself for getting Covid, it was my fault for doing something retarded.
No. 2015169
>>2012781oh interesting. I have presumed endometriosis (all the women on my mum's side have had it, confirmed by surgery but i'm still on the waiting list) and have heard period issues are common with EDS but don't know what the connection is exactly. do you have any theories?
i have a typical hypermobile presentation really, with joint and nerve pain, fatigue, scoliosis, digestion and autonomic nervous system issues. my neck is the absolute worst.
>>2014102it's really taught me to have boundaries in terms of what i can commit to and offer other people. i just don't have the energy to give a lot of attention to friendships, so i've just always been a bit of a loner as a result. but hopefully i will attract more people who are understanding of that, the more i'm up front about it. that's the plan at least. in the mean time i like venting here too.
No. 2015388
File: 1716424790336.jpeg (15.6 KB, 475x316, jointpain.jpeg)
>>2014095It's not uncommon for women with EDS to have very heavy periods. Googling will bring up a few medical articles that establish there is some connection, but functionally we do not know why there is a link. I'll talk about my own experience but put it under a spoiler since it's a bit TMI. If you're concerned you have EDS then you should ask your PCP for a referral to a geneticist.
I have always had heavy periods that would at minimum last a week. It was annoying but manageable for a few years. Then, for seemingly no reason, I had a period that lasted a year and a half. During that time I was bleeding heavily, going through a super plus tampon and pad every thirty minutes. I passed blood clots that I kid you not were the size of oranges. I gave myself burns all across my abdomen and lower back because that pain was preferable to the cramping I was experiencing. My hemoglobin became dangerously low and I was hospitalized for awhile, eventually having to get routine iron infusions. My condition was unresponsive to all hormonal birth control that I tried. I saw three different OBGYNs, a hematologist, and ended up having to see a reproductive endocrinologist at a research hospital. My cousin, the only other woman of my generation on my maternal side, had the same exact presentation and went through all the same hoops. The endocrinologist I saw was recommended to me from her.>>2015169I don't have any solid theories at this point. The one I have heard that makes the most sense is that the uterine lining has difficulty attaching itself to the uterine wall adequately, thus when you have a period it's much heavier due to the excess of uterine tissue. I have also heard the reverse, that because it cannot attach then it leads to longer periods. The reality is no one really knows and everyone is just guessing. It's really disheartening and so frustrating.
My last relationship ended in no small part due to my inability to function on the same level as my health boyfriend could. He was an asshole so I shouldn't be too sad about it, but knowing that something so outside of my control led to it is still hurtful.
No. 2015570
File: 1716434378766.png (1.25 MB, 1090x664, file.png)
any lupus babes here? don't forget your HCQ today!
No. 2015952
>>2015388the picrel in your post hits hard. I keep thinking if i'm this decrepit
now what is it going to be like when i'm older? it's so bleak.
No. 2018833
>>2012311I have acid reflux and it fucking sucks. I know the only solution is the diet (despite how many people online are convinced otherwise) but it’s so hard to avoid temptation and eat something you should not have.
I have been having a flare-up for about 6 months and it’s my second attempt to hardcore diet for 30 days to make my symptoms better.
No. 2018848
File: 1716604460166.png (553.24 KB, 2000x1675, Joint-Hypermobility-Syndrome-2…)
>>2012745>>2012723Help, I've actually been wondering if I have this for years. My joints are super bendy like that except for my elbows, everything else is on point. My knees are so hyper mobile that they tend to pop out or something idk how to explain. I've always been told my issues are just because I'm overweight so I doubt a doctor would say I have it. I live in a third world country so I think I'm fucked, I don't think anyone would diagnose me. What am I supposed to do about this?
No. 2020659
>>2019769I feel you nona… Tomatoes are so good.
Regarding ibuprofen, my doctors always told me to took an omeprazol with it just to be safe.
No. 2021125
>>2012565>>2012723I have "just" joint hypermobility, I'm a very clear case for it. It never bothered me until recently. It was just a neat party trick until I developed lower back pain and sciatica due to it which lasts for months and is really painful. Predictably I sit in all sorts of weird positions which caused the sciatic nerve to get stuck in the first place and I feel like a massive retard getting hurt from just sitting. My good friend has it too and she gets hurt a lot easier than me which forces her to skip out on most physical activities like hikes, so I know it can really suck.
Searching for any type of exercises or help online was hell on Earth. It was co-opted by both old people
and munchies, and while I don't mind the former, the latter is full of annoying healthfags with a laundry list of conditions (usually EDS + POTS + fibromyalgia + "AuDHD") constantly whining and making it their whole personality.
>>2012735You can have hypermobility without it impacting you much, especially if you're relatively active, and it's not always EDS. Muscle strengthening is one of the main ways of management so you may not feel anything is wrong until you get much weaker and more sedentary.
No. 2021131
>>2019565IBS is a common 'side effect' of PCOS, PCOS has autoimmune qualities. I had both too. My advice for PCOS is heavy weight training rather than extensive cardio, with higher testosterone we build muscle easier but it tends to be less hard on the body and joints than heavy cardio. Burning calories in the short term isn't even worth it if you're causing a severe inflammatory condition because inflammation can worsen weight retention. Counterintuitively once I stopped overexercising I had better weight loss results with PCOS because inflammatory responses spike cortisol which exacerbates other hormonal abnormalities common with PCOS.
I too have PMS-related digestive issues
triggered but personally I have figured out a good diet for non-PCOS times and a different diet for the week preceding/during the first days of my period and that seems to work well.
BTW sorry for unsolicited advice but BC can actually worsen PCOS long term if it contains estrogen, I had the best results with cyclic bioidentical progesterone therapy while BC actually exacerbated my symptoms.
No. 2021525
File: 1716747506518.png (479.57 KB, 2150x1204, checklist.png)
>>2021155yes but i thought my stretchy skin was normal until the rheumatologist i saw tested it and said it was very stretchy.
for anyone wondering about the hEDS diagnostic criteria, see picrel. this is in addition to the beighton test posted here
>>2012745 and requires at least two of the following to be present:
>unusually soft skin>stretchy skin>unexplained stretch marks (striae distensae) not resulting from weight or pregnancy>papules on the heel (little bumps)>atrophic scarring (scars that look like papyrus sheets)>prolapse and hernias>dental crowding/narrow palate>arachnodactyly or positive walker or steinberg signs (fingers around the wrist and thumb across the palm)>arm span-to-height ratio ≥1.05>aortic root dilationalso need to have at least one of the following:
>chronic MSK pain in two or more limbs>recurrent joint dislocations in absence of trauma plus family history is also taken into account.
i got 8/9 on beighton and 7/12 on the second criteria and have a diagnosis. unfortunately it's so vague because there is no definitive blood work or imaging test etc. - it's only based on symptoms and the hypermobility test (and i think something like 10-30% of the population has some degree of hypermobility). hence one of the reasons why it attracts munchies. when you think about it a lot of people also have thinks like stretch marks and dental crowding.
rarer forms of EDS can be diagnosed more definitively.
No. 2023807
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Any diabetics in the house? I have T1D and some days I feel like I'm normal and other days I feel like it's a completely crippling disability. Thankfully, my diagnosis was so traumatizing that even my worst days feel like a breeze.
No. 2024004
>>2023807Hi
nonnie I'm also a t1d. Been diagnosed for 20 years and it still sucks but I'm in the process of getting approved for a pump. Have you thought about getting a pump?
No. 2024007
File: 1716897632253.jpg (33.28 KB, 1155x648, chiari_malformation.jpg)
I have recently been diagnosed with Chiari Malformation which was an incidental finding on an MRI scan, which now explains many many things for me, including frequent headaches and more. Does anyone else have anything similar?
No. 2024837
>>2024353Ayrt
>medical device responsible for the most deaths/injuries in my country. Which brand(s) was/were responsible? And which pump did you have in high school?
The pump I'm in the process of getting is a tandem tslim and now I'm kind of worried kek. And that sucks that the insurance doesn't cover it all the way. Have you looked at any other alternatives, maybe they'll be cheaper.
No. 2026915
>>2014102Yes, I fucking hate this.
With my acid reflux, it’s really hard to be around food with people sometimes. Like, if I’m visiting someone I have to bring my own food because the last thing I want people to do is be accommodating and cook for me. And I also hate when my friends ask me to choose a restaurant according to what I can eat. I cannot eat anything most of the time, it doesn’t really matter where we are going. The majority of restaurants sells fatty, acidic, over-fried food. Even the vegan ones and the “healthy” ones. God, I wish there was a chain of restaurants for people with stomach issues.
No. 2034368
>>2034268I'm not american but I know in the US it's really bad. Look up Claudia Merandi, she's a pain patient activist. She has endless horror stories on her tiktok about people left to die without pain medication, people killing themselves because of the pain, people forced to live in pain, and several doctors who're like 70 years old and in now prison for prescribing opioids to patients who needed them. She frequently mentions a doctor who says women with fibromyalgia have pain because they were molested as little girls, so they don't need meds because it's psychological.
Even pets now don't get prescribed pain meds. Your poor pet gets surgery and he gets sent home with gabapentin. It's awful.
This makes me pretty upset because I have chronic pain and no doctor has ever offered me real pain meds. Idk if opioids would work on my type of pain but at least I'd like to try. They don't care and just left me to suffer.
No. 2034414
>>2034368Yeah I'm not American either, I'm living in Canada though which has US-level opioid crisis blowback despite not having the same level of overprescription that the US did in the first place (we did have an overprescription problem and we do have a fent problem but the fent problem seems relatively separate and the overprescription was not ever to US levels from what I understand). Most EU countries will still happily give you opioid painkillers for stuff that merits it but Canada is really bad after the opioid scare, walk in clinics even have signs on their doors that say they're not legally allowed to prescribe painkillers now.
I will look up Claudia Merandi, thanks. I don't even follow 'pain activists' but just in my personal life I know several horror stories of people whose lives have been ruined by sudden withdrawal of prescriptions with no alternatives or treatments offered, including my own family members (who I know are not addicts or faking because I have known them my whole life). My doctor acts like legit viscerally scared of prescribing me opioids even though I literally take like the minimum dose possible for only 3-4 days per month for endo, and I take XR which can't even be resold as a street drug. I also heard from other endometriosis patients that they weren't even given painkillers (other than OTC tylenol) after laparoscopic surgeries or hysterectomies. They are so paranoid.
There's almost a 100% chance opioid painkillers would help with your pain since they act on the brain/neurons, not on inflammation or whatever. I also have the unfortunate situation of not being allowed to take most other pain meds (NSAIDS for example) because they caused a chronic illness I have now, so my options are opioids, TENS machine, hot water bottle basically. For pain so bad I've literally been tempted to jump off buildings to make it stop. Opioids are actually one of the 'safest' pain medications out there if you dose them properly and don't take them continuously/don't take them with other drugs that interact with them, unlike Advil and Tylenol which can and do cause deaths and long term problems even if you don't take more than you're supposed to. If you take the amount of opioids you're supposed to and don't take them together with other drugs there's basically a near-zero percent chance of anything negative happening to you at all except for the potential of dependency/addiction (which aren't even the same thing), and that can be prevented by just not taking them continuously. The fearmongering is so insane. This is one of the oldest, effective and natural drug subclasses we have on the planet.
No. 2035270
File: 1717505941716.mp4 (2.34 MB, 1080x1920, kittykittyivy.mp4)
No. 2035899
>>2035326So why were doctors giving pain medication to people who didn't need it in the first place, and why did they then turn around and start punishing people who need the medication for overprescribing themselves? You need to be giving someone a lot of pain medication for a long (uninterrupted) period of time to get them addicted, and obviously no one should be giving anyone that amount of an opioid if they don't have a condition that requires it.
Do you have a source for the claim that 'what would be minor pain' to a normal person is unbearable pain to an opioid addict? I've known a couple opioid addicts/opioid dependent people and this was never true of them, I've also never seen any research suggesting this is the case. The people I know who are dependent are dependent because they need pain medication because they are severely ill or disabled. Them being 'dependent' on pain medication isn't a bad thing, it's just a reality and has nothing to do with addiction. Anyway I do think it's kind of suspicious that no one worries about other extremely addictive drugs like adderall, SSRIs, benzos, etc. being prescribed to people even though they also have potentially dangerous side effects, it's just the one random drug pharma got sued for shilling too much 10 years ago that's the problem.
>>2035326I agree with you that it's really humiliating and I hate when random people try to give 'advice.' Someone literally told me to cure my endometriosis by eating bananas once and would not stop insisting it 'really works.'
No. 2037450
>>2037411I started this thread because the long covid subreddit was infested by depressed moids who want to off themselves anon.
My chronic illness is still quite controversial, before the university of Zurich discovered the blood markers for long covid, some right wing anti waxers would raid the online communities for long covid and bully the members by telling them they are sick because of the vaccine. On the contrary, there are lc patients who are waxed and not waxed, the disease doesn’t seem to discriminate based on vaccination.
I think batshit insane people like extreme right wingers or mentally ill people love to bully sick people because they can and they find us beneath them.
The communities themselves also have echo chambers, there ways to manage ME/CFS I’m experiencing and some people just want to cry and complain and never listen. It’s better to manage your symptoms and get exhausted after a day (and still have a sense of normalcy) than being housebound.
The worst is people who trauma dump and talk about their suic*de plans. That’s the last thing I want to hear about. I want to stay optimistic. Every other day I go through something that would send a normal healthy person into the emergency room. Some days it’s very scary and I break down crying. Some days I have such a terrible brain fog that it feels like I have dementia. I’m actually going through a flare up this week and I have tachycardia and dizziness and struggle to eat or even go pee. But I will not go cry about how I want to kill myself and bring others down. I want to live. And I know you Stacies want to live as well. So that’s why I created this thread here on lolcow.
No. 2037468
>>2037427NTA but I feel exactly the same. It's so cringe and depressing how all their content centres around their illness and they constantly point out how sick they are and that ME is literally
INCURABLE actually!!
>>2037450I have ME too and I swear it's one of the worst chronic illness communities (but maybe I'm biased kek). I'm really thankful to have made some progress in managing and improving my symptoms over the past couple of years, and it's just so depressing to see people wax lyrical about their suicide plans or the fact that they're housebound because they won't even go for a short walk even though they haven't tried. Of course there are days where I can't do as much as I can on other days, but I would prefer to keep trying and stay optimistic (like you, based nonna) than just sit and wallow and whine about how incurably sick I am.
Stay strong nonnie, it's so hard some days but know I and everyone else here is rooting for you ♥ No. 2037617
>>2037450Yeah I actually relate to the suicidality I was suicidal like 3-5 years ago because it seemed like there was no viable treatment for my problems but I didn't sperg about it online and instead I tried anything and everything I could find that people said might work, eventually I found things that worked, got officially diagnosed, and now I'd say my symptoms have been reduced by 60% or more and I am functional again just because I didn't give up and make my illness my whole identity. Most people can't even tell there's anything wrong with me now unless they catch me on a really bad day.
>>2037468Especially if you're chronically ill I don't think it helps you to spend too much time hanging out around depressives who define themselves by their illness. Especially if you're chronically ill I think this affects you mentally and you start to feel hopeless when what most chronically ill people need is hope and a viable path forward. I have chronically ill people in my family who resisted viable treatments for years because they were so 'cynical' about anything working and all they did was wasted time and energy and dragged everyone around them into a constantly low mood because they never found any way to be positive and optimistic, it doesn't help anyone especially not yourself. I get just wanting to vent sometimes about feeling bad but it becomes a problem when it's your whole lifestyle and way of relating to other people.
No. 2038243
>>2037617I understand
nonny. I am privileged to have a supportive husband and family and I don’t know how I would feel if I didn’t have the support system I have. I hope you can understand that I’m not criticizing the negative feelings about your condition, but the people who have narc tendencies who just won’t let others feel okay about life.
>>2037468You too
nonny. We got this. I’m slightly better today. Actually went grocery shopping, had to take a taxi back home after dizziness and chest pain but it’s better than yesterday.
Last year I was sick for months and suddenly I started to feel better towards the end of the year. However, my symptom came back after a second covid infection. I want to believe this too shall pass
No. 2039330
>>2039103>they can turn into competitions of who is sicker which is very annoyingGod. I am the anon who first asked the community question and this is where I'm at now. I'm surrounded by people who want to play oppression olympics and shout down others who aren't as worse off as them. Literal check your privilege type talk. Would you believe it's majority belligerent personality disordered moids who are the most vocal? They make everything about themselves too. You need to add disclaimers to your posts or else they get
triggered and think you're talking about them. I got better by not being brought down by these types, and I'm sure they're seething that I can live a better life than I did before
No. 2039540
>>2039330I don’t have the energy to join in person communities at the moment, but the subreddit for long covid is occasionally raided by depressed moids who love to fear monger about how we will never get better and we are all gonna die!!!! I have this tinfoil that some of them actually take pleasure from seeing people with chronic illnesses suffer and they want us to feel more depressed about our situation. And then the gate keeping and piss contest about who had it worst and longest and how the newbies don’t even know what’s coming at them.
Ironic how they complain about society’s attitude toward people with chronic illness and then behave in a similar way. Moids are gonna moid.
No. 2039598
File: 1717768537900.jpg (32.93 KB, 526x526, k.jpg)
i'm not trying to turn this into the gender critical thread but do any other nonnas with health issues that only impact women find themselves increasingly frustrated with the language used to discuss our conditions? i'm very tired of medical establishments and awareness groups prioritizing gendie feelings in spaces meant for serious discussions regarding women's health. it's bad enough that diseases like endometriosis are direly under-researched, have limited treatment options, and are overall misunderstood or outright ignored by people who think it's acceptable for women to suffer with horrendous symptoms, but now we can't even talk about it without once again being reminded that troons can't handle it when the attention isn't centered on them. an endometriosis charity even appointed a TIM as their CEO and responded to the backlash by stating that endo isn't a gynecological condition.
No. 2039640
>>2039598This bs and then there's the troons I've seen claiming that endo is in itself somewhere on their weirdass
>well actually everyone's technically a tranny if their body isn't doing exactly what it's meant to be doing, exactly rightThat new batshit definition of the how far the trans umbrella reaches. Trying to use every womb related condition to relate it back to your body betraying you just like a trans persons body does! So deep. SO similar. First they did it with pcos and now having endo by default makes you not entirely a woman?? ffs can they leave anything alone.
No. 2039693
File: 1717776110205.png (411.25 KB, 600x600, men.png)
>>2039540They really are. The worst I see with women is the munchie types who use their illness as a quirky label or post hospital selfies but I'll take that any day over moids gatekeeping and screeching about mild people. Or having no empathy towards anyone but themselves since they
clearly have had it the worst. Bunch of whiny cunts. Picrel is how I imagine them kek
No. 2039986
>>2039598That TIM CEO you mentioned is from one of my local endometriosis support groups. that really made me lose it when it was announced. Reminder here in case anyone missed it
>>>/snow/1927676 (this guy has also inserted himself into pregnancy charities, and is trying to establish himself as an expert on women's health when he has zero experience).
The language erasure is so insidious and I will strongly push back against it anytime I come across it, I don't care anymore.
Like you say, it's been hard enough getting to the point where we can talk openly about women's health issues before it's policed again.
No. 2040003
>>2039994I haven't but my doctor suggested it and then the gyno I saw told me it's probably not worth it because it often grows back and it can lower your fertility if you're considering that you might want children one day (not the only reason why that would be bad, I think if they take out too much of ovarian tissue it can also lead to other problems like hitting menopause early or it fucking with your hormones). One thing I read while researching it is that if you get the excision or ablation surgeries you can prevent it from growing back by taking high dose progesterone for like 6 months to a year after, it makes you sleepy so it's often recommended to take it as a vaginal suppository. There's a website I found useful for women's health issues called cemcor or something, if you google it plus the keyword endometriosis you'll probably find articles on treatment options. It's one of the only really cutting edge research labs I've found that talks about new evidence for treatments.
On the other hand depending how bad you have it I think excision can help, the issue being that the tissue often grows back so you want to figure out how to make it stop growing back if you choose that option.
No. 2040051
>>2040033I think it largely depends on how good the surgeon is as well. From what I understand some surgeons end up taking out too much healthy tissue and will struggle to get all the endometriosis from a certain region, which makes it more likely to grow back quickly and also can damage your fertility. If you get a good surgeon I think they can get rid of the endometriosis without affecting too much of your reproductive tissue (assuming it's not completely covered).
I'm still considering it as an option but I would want to know how experienced the surgeon was and I'm trying other things first. I've heard very mixed reviews from women who got these surgeries, some of them saying it did practically nothing and others saying it massively helped with their symptoms and took years for them to start to worsen again.
No. 2040927
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looks like there is now a saliva test for endometriosis, but it's extremely expensive and not widely available yet. still, glad the technology is there and hopefully it will make sure more women get diagnosed earlier, and without going through surgery as a first step.
>>2040003>>2040033thanks nonas. i'm unable to take progesterone-only because it really fucks up my joints, and gives me worse depression. so i need to research other options but there is so little out there. i've had gynaecologists tell me surgery is not worth it because it will keep coming back and the only way is birth control, but now i'm in my 30s and the symptoms are so much worse so i think it needs to be addressed.
>>2040865so glad you finally got answers, did you have it excised? school days were the absolute worst because of endo. i ran home from school a few times. once because i bled onto the chair, despite wearing the thickest available pad… horrific and mortifying.
No. 2042119
>>2040865Went through the same experiences since I was 10 nonna I feel for you and am happy you got diagnosed. I have an almost exactly identical memory from a class in 7th grade where it literally hurt so bad I fell out of my chair onto the floor and couldnt get up and was like biting my shirt to stop from screaming lmao and the teacher was like 'omg you're being so dramatic all this for a little tummyache' lmao
>>2040927I think birth control in most cases is a bad idea because it will worsen the root cause (high estrogen) by adding more estrogen into your system when it is already unbalance. Have you tried bioidentical progesterone, or only 'progesterone only' i.e. synthetic progestin BC? Apparently bioidentical has a lot fewer symptoms, you can also get it in creams or vaginal suppositories that might not affect the rest of your body as much but otherwise I've only tried 'old wives tale' type remedies and a TENS machine (which kinda works but not that much) plus strong painkillers. My mom is swearing up and down that doing castor oil compresses 'really works' for a bunch of people she's talked to lmao and I think I might actually try it just out of sheer desperation because I don't want to go the surgery route quite yet.
No. 2043402
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EDS anon here. I woke up today with my left arm in severe pain and being unable to drive, use a shopping cart, or close my car’s trunk after grocery shopping. All I did the day before was cut some vegetables for dinner. I’m so tired of this nonnies.
No. 2043915
>>2043402is it nerve pain? or more joint or muscle? do you take pain killers or are they useless? i get arm nerve pain that is
triggered by seemingly nothing, but find regular nerve flossing helps keep it at bay (you can search on youtube for the exercises).
No. 2044016
anyone have any advice for navigating a relationship with someone who isn't disabled when they are struggling with feeling restricted because of your own capacity? i don't want to make him feel like he's missing out on a normal life and im working extremely hard to improve on my own self & health but there is some things i'll never be able to do "normally", my strength has gotten so much better over the last several years but i still have to use mobility aids, i can't walk as much as he wants, i can't go as far or stay as long, i go to physio weekly, i do my exercise programs, i see an ot, i have support workers ect, like i am extremely well supported but its not like i can just cure it, it impedes on my own life enough and i dont want to impede on his.. its an uncomfortable reality that i hate admitting to, but i just dont know what else i can do.. i work ontop of attending my appointments & support stuff so im generally busy during the week, a lot of the time i find it hard to do anything else aside from my "responsibilities" but its been a massive goal to do more and feel good while doing it. i think he assumes that me being in pain = can't do, but pain is just an experience i have had to accept and i still want to try even if it's painful, idk, just want to see if anyone relates or has gone through this before, and if they can work around it, we're almost 2.5 years in and i really love the relationship, i just want to do better in it
No. 2044029
>>2043915It's chronic tendinitis, I have both "golfer's elbow" and "tennis elbow" in both of my arms. It sounds like no big deal but the pain is so bad I wake up unable to move my arms sometimes. I have been living with this for ~6 years at this point.
I do nerve flossing on occasion to help with my ulnar nerve, since my pinky and ring finger will go numb occasionally.
No. 2044044
>>2044024Seconding this. It's not your fault that you can't walk as much as he wants you to and it sounds like you're doing more than enough to try to treat and control your illness. If you've had this illness for 6 years and he started dating you 2.5 years ago he knew what he was getting into and should understand that this is just what you're dealing with, possibly forever.
My bf knew me for many years before I became severely chronically ill and has never made me feel bad or guilty about the things I can't do anymore or the times he needs to help 'care for' me, but I do sometimes feel guilty anyway without him guilt tripping me in any way so if that's what's happening, then just try to work through your guilt yourself and talk to him about how you're feeling if you think he's going to be supportive. But if he is the one actively making you feel bad that's not a you problem, that's a him problem.
No. 2044108
>>2043993Neural Blockers, i had been on botox and medication since i was 15 and it was
genuinely horrible experience i dont understand how other women can put up with it
No. 2099757
File: 1721656713084.png (4.09 MB, 2542x1020, Screenshot 2024-07-22 at 15.52…)
Kek nonnies I want to kill myself. I just came back from seeing my ex (we broke up due to my illness) and on my way home some guy handed me a flyer for an "international healer" lmao. I almost want to believe this is divine intervention and that I should call him. I just stood there crying after reading this, it's both funny and sad.
No. 2100676
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Does anyone else struggle with chronic exhaustion? I sleep 12 hours minimum everyday and some days need a 90 minute nap after being awake for only a few hours.
It’s been this way for as long as I can remember, with little to no improvement. My last blood panel flagged my ferritin levels as being dangerously low at 8, and despite taking supplements for three months nothing has improved. Last time this happened I ended up needing multiple iron infusions. I just want to feel normal and be able to do my work.
No. 2100932
>>2100695Thanks for the suggestion, your advice is 100% right. I already eat a red meat heavy diet. I know OTC supplements are trash as I have been down this road before, but I need to take them for a few months before my doctor will approve the iron infusion. Also so my insurance will pay for it.
I am pretty certain I have a processing issue with iron, I do for b12 and need to supplement with injections. No matter how much or what I eat it is never enough to keep my levels in a normal range. I am hoping to convince my doctor of routine iron infusions going forward since obviously my body is too fucked to be bothered to store it. In the meantime I have no idea how to cope with my constant fatigue while everything else in my life suffers. It’s so frustrating this happened again.
No. 2101095
>>2100676I have very bad exhaustion issues but other than high HG and high hematocrit my iron levels tested normal and I've no idea what's causing it. It's weird because I'm a self harmer and high HG is probably the opposite of what I should be considering how much blood I've lost over the last few years. Like I should be anemic but my hg levels are fucking high.
The rest of my panels are clean besides genetic high cholesterol.
No. 2130739
>>2130731I've tried to be referred to a cardiologist but because an ecg where I'm just laying down normally, is normal, nothing comes of it. I've been sent to the hospital for fainting in public before and staff or passerbys have called an ambulance. By the time I'm seen, usually about 8 - 10 hours later, the moment has passed so nobody bothers to look further in to it. I've spoke to my GP about my hospital visits and these occasions, a nurse gives me an ECG, its normal they tell me to drink more water, I say I drink plenty of water, they say come back if it happens again, it happens again and I go back, its a different GP, same thing happens again
No. 2132270
>>2130727Are you able to sleep well? Do you take any kind of medication?
Be sure to take most tests available to you. Heart scan, holter, brains scan, go to a neurologist too if you can, and extensive blood tests of course.
I used to have something similar years ago, hot flashes, high heart rate at all times, tremors in the evening, a lot of pain and nausea all the time and instances where I would jolt awake at night for no reason. Could not shit solid for a good two years, I would retch when drinking water and eating light things. I've never fainted but I had many moments when I would feel lightheaded, numb and my vision would go away for a moment. After taking most of the tests available, finding nothing and being hospitalized for low weight they just concluded it was all the result of burnout from stress, close to a mental breakdown either from depression, chronic anxiety or cptsd. I also thought it couldn't be stress because I felt like shit even when nothing was stressing me out but in cases like this it takes a long time to wear off. The doctors I had (finally, after two long years, but I had troubles even before) thought of a psychosomatic disorder because of the constantly elevated heart rate but nothing showing up in heart exams. It's a hard thing to come out of and I had to resort to medication because it was like my body was stuck in that state and couldn't return to normal no matter whan I did. I'm still not how I was before this shit all went down and probably never will, but it's relatively normal if I can manage stress.
No. 2132300
>>2132270My sleep fluctuates, at the moment its difficult because its very hot, but even when I've been consistently sleeping well, its still a problem. I don't think its stress as I'm in a very good position with very little stress, a stable good income, a good job where I work from home, very understanding employers in terms of my mystery condition and symptoms. It has been identified that my heart rate does elevate quite high based on the Heart monitor I wore over 3 days, but the tremors and fainting are still a mystery. I just dont understand what I can do, I started taking vitamin supplements, I gained weight, I've had countless blood tests. I do wonder if something is wrong with my brain, as I occasionally get random leaks of liquid from my nose when I bend down and get up too quickly and thats been happening since I got a head injury back in 2017, but my doctors said the leaks are so infrequent its likely not a problem, but my head was smashed in to a wall very hard and nobody really took a good look at the lasting effects and they don't seem to want to. I think things will have to get worse before anything is really looked at. Which is frustrating