Zazz

All I can say is that I've experienced all of what you describe. I had an endoscopy that found gastritis and villi atrophy. I ended up in desipramine (antidepressant that oddly works better for nausea than depression) which offered a modest improvement, and Zofran (anti-emetic). Motility test was normal, Celiacs was negative. Never got any solid answers. For me, my GI system definitely responds to stress (and heck I'm always stressed about something)... PsA and POTS definitely contribute, but I do get instantly nauseous to certain types of stress and anxiety. I personally think the rabid appetite is kinda a balance thing... I get so nauseous so often that sometimes all I have in a day is what I can drink, so when I'm not nauseous and do have an appetite I get really, really hungry. It kinda has turned into this restrict/binge cycle, which I think makes it worse, especially if I eat a lot before bed (this pretty much assures I'll wake up with an upset stomach) which idk could be GERD since there's inflammation in my throat. I know my hubby has problems with eating before bed but he actually wakes up in the night and I don't. Idk that's often kinda a hollow, acidy feeling and I think it's kinda about stretching the stomach out before having several hours for the food to digest... potentially ending up with an empty stomach that's irritated by stomach acid. What I can say is that the nervous system is hooked up to the GI system and one effects the other pretty intrinsically. Belly problems are extremely common with anxiety.

If she says the same thing, idk. If she claims the biopsy is somehow wrong, I'll fire her too, get through the taper on my own, and use my derm for prescriptions. It's that simple. I think they make tests for yeast that can be bought OTC, they definitely make tests for vaginal pH... which I could use and at least guess if I need the help of a doc to treat something like an infection (pH is generally high in bacterial infections). There are other gynecologists in this town... I don't have to go to them for the LS. The only thing I don't think my derm wants to do is offer me long-term steroids, which is fine because I don't want to be on them long-term anyways! You say it can be healed and man I believe you. Studies show extremely high efficacy rates with treatment. I fucking want that. I want that so bad I've already shelled out a few hundred on various topicals before we knew what it was. I've tried everything (and why should I continue to take treatment that doesn't work?). Betamethasone was the first thing that had the entire area feeling normal, and I want that beyond words... so help me. I also cannot emotionally tolerate a doctor that's rude and rough and treats me like a dishonest child... and it worries me that the treatment in their hands may be intentionally insufficient (a la prescribing a topical for an infection that didn't respond to the first round of systemics and has been left alone for a month... still seems negligent to me). It's a trigger... like a trauma trigger (not just about doctors). Not even just the roughness of the exam, but when people make me feel like that. It's not a common reaction to doctors. Even my PCP who I kinda hate because his care is lazy... doesn't make my brain scream, doesn't make me cry. I've learned the hard way that I will get poor (if not abusive) care from these people. To be clear, I cannot come to peace with living with this untreated. (And I gotta be misunderstanding what you mean by that... Peace with the fact that I have LS? yeah, if it's treated. Peace with being gaslit by people I'm supposed to be able to trust with my livelihood? No one should have to make peace with that.)

Ironman, no, really? I mean... no, not really... I have two tubes of Tacrolimus and two tubes of Betamethasone. I can definitely do this myself, I just don't think that's wise. I can also definitely get my derm to keep prescribing Tacrolimus, so... if this doc doesn't want to treat the inflammatory condition I most definitely have, it's not like I absolutely have no choice but to suffer. I'm trying to do the logical thing here, and to protect my mental health while doing so. (To be clear, I was prescribed both of these specifically for the LS, just the person who prescribed the steroids is a nurse so she can't oversee long-term treatment) Do you think I should just go back to this previous gal and take all the estrogen in the world while it doesn't work (psst we already tried that, the only thing that has ANY effect is anti-inflammatories). Perhaps I should just ignore it? Sex life be damned, functionality of just living be damned (at it's worst it is extremely painful to walk because of the friction, it's painful to use the bathroom, and at times it gets to hurting so bad that it triggers the POTS and I have to sit down for a couple minutes so I don't puke or pass out, both of which intense pain has been known to do to me). That sounds great, right? Let's just fucking do that... cus I'm just crazy? Biopsy doesn't mean anything when the person is ill in the head, yeah? This is the kind of shit that makes me start having suicidal thoughts... and I've been fighting tooth and nail against going into that hole. I'm not going to accept it because I got way too much shit to live for, and my depression is a fierce impact on my ability to function. I have a child I kinda gotta be functional to care for (and I don't love having to say "I can't chase you right now because I'm in too much pain"). No, I'm not willing to accept a doctor telling me that I'm lying when I literally had three pieces of my vulva sent off to pathology. That's fucking bullshit. Whatever this doc wants to prescribe, that's chill. I'll take it. But I'm not going to sit there and have a doctor tell me I don't have a condition that we diagnosed via biopsy. That's absolutely 100% ludicrous. I'm not gonna sit there and be told it won't get treated because they'd rather try unproven adjunctives, esp when I have both gold standard treatment and generally proven off-label treatment in my cupboard. Sorry (not sorry). I deserve better than another six fucking years of just barely getting by with Aquaphor, zinc oxide, and oils. Don't get me wrong, I'm so fucking tempted to ignore it... but that urge is juxtaposed to quitting my meds and living in a cave. It's insanity, and I fucking know better. (Yes, I am getting irritated now. Docs have the power, and I get that... but if they would rather me suffer than treat something the way the entire world treats the damn thing, fuck them. I don't love my derm, but he at least recognized that biopsy is definitive and inflammatory conditions need to be treated with anti-inflammatories... Don't feel like he's in my corner per se, but he's also not a shitty doctor... and I am not a test subject for treatments that have been proven largely ineffective - I'll take the damn hormones as they're intended, as an adjunctive... if that's what she wants me to do, but I'm not going to accept not treating a condition that absolutely must be treated or else I'm prone to a fuck ton of problems down the road --- this condition is notoriously destructive and I did not self-diagnose this (the DX actually caught me entirely off guard). Nevermind that I've had doctors try to tell me steroids are the ONLY thing for LS, but since Tacrolimus has so much weight behind it and my derm suggests it for maintenance, I'm more than ok with using that alone if that's the best I've got.) To be clear, I don't see this doctor trying to argue against the biopsy results. I've never known her to be rude, inconsiderate, or anything of that type. If she doesn't want to treat the LS, I still need someone for pelvics... derm can direct treatment for the LS if it comes down to that. Obv he's already done that somewhat... and I'd go to just him if it weren't in an area that I need a gyno on my team for. On the bright side, you're reminding me that I have to tread very lightly when I finally get in to see this doc. Imma spend the entire time leading up to the appointment obsessing about how to talk to this woman. I mean, I already was going to compile all the tests and a timeline cus she's gonna want that info no doubt (they always do)... but yeah... thanks, friend. I guess I'll just hope the pelvic pain goes away and not ask to be safe and not sound like a loon. Marc, yeah that is unfortunately a reality of the long-term effects of damage, and the result of delayed diagnosis (not saying your docs delayed it, just that they didn't figure it out right away... which is... that's kinda just medicine). I definitely have had some of those lingering pains... my body likes to do this lovely thing that I think is probably some kind of Koebner thing from the PsA that I'll get an injury (example, I once cracked my sternum on the ice while skating...), usually I ignore it and it seems to heal up, then sometime later the pain comes back and I go in like a dummy wondering wtf is up with that and there's usually little more than some mild inflammation (ie no clear sign of injury... cus the injury healed some time ago). It's wild, man. Nerves esp can get fucked up in injury and just never get back to normal... there's actually a name for this phenomenon (I think Regional Pain Syndrome?).

Holy fuck guys. My mom suggested I go back to my Ob. She does general gynecology and has openings! This is all I got, but I'm hopeful again. I was scared they'd say no she only does Gyn in the setting of pregnancy but YAY. I really liked this doctor, she has an excellent bedside manor and has always been so kind. It might also be nice to see the same doctor I was seeing when all of this started (I think it was like month 2 of my pregnancy, certainly the first trimester... also when health anxiety symptoms started to be fair, but that's neither here nor there since this is a condition that's been confirmed by biopsy). I have no idea if she'll remember the discoloration I had through the 2nd and 3rd trimester (lol it was fucking purple, though still my best guess to that is kind blood congestion from having a watermelon on my pelvis). If the pelvic pain persists, I think I would feel safe asking her about it. And fuck, I at least need to feel safe asking questions. Last night I wanted to cry thinking about the appointment with the previous gyno (fuck the gal didn't even warn me when she was going to touch me, insert the speculum nor her fingers and just shoved the fucking speculum in... I don't remember her even adding lubricant but I might have just been so out of it because I hate pelvic exams and it was like... the fourth one in a couple months)... right now I want to cry just feeling like maybe it's gonna be ok. Wish me luck, everybody. Maybe now this can be over? Fuck I hope so. I don't even want another pelvic. This disease has been my worst nightmare concerning my anxiety and OCD. Between having doctors regularly speculate that it's vaginal atrophy, act like I'm insane, and try to explain away the biopsy results (I never in a thousand years thought a doctor would try to deny biopsy results, especially with something that doesn't have a histopathology mimic (late stage mimics Scleroderma, but early stage (what I was DXed with) doesn't look like anything else)... nevermind the refusal to treat and having to repeatedly advocate for myself in a way that practically requires research (fuck I was up till 4am researching vaginal atrophy... legitimately trying to validate the BS this last doc said... wanna guess what I couldn't find in all of medical literature and studies?). This gal is like "well we're taught when you hear hoof beats, think horses not zebras" and I'm thinking "we tested the genetics of the horse and found out it was a zebra"... but also, LS isn't actually rare, it's uncommon... and really we're looking at a zebra that's mostly black with white stripes with docs certain it's actually a horse because they think zebras can only be mostly white with black stripes (this last doc was suggesting zebras are all albinos ffs). Like we got all the makings of a "zebra" with pretty classic distribution of stripes, generally the right size and shape to be a zebra or maybe a donkey... but this gal looks at it and goes "that's just not white enough, must be a horse"... doesn't even consider the donky or any other hooved creature despite that it really doesn't look or act like a horse. 🙃 I think my old Ob can at least entertain the idea that something who's genetics showed it's a zebra... is probably a fucking zebra. I seriously have been thinking way too much about "am I going to have to prove that I have a disease that was already proven by definitive tests?" like... wanna take another chunk? We take enough chunks and it won't matter that I have LS cus it'll all be scar tissue anyways (I would be willing to test around the opening but I don't think that's necessary since it's pretty common for LS to effect this area!). I am exhausted by having to say the same thing over and over to doctors... I'm terrified of having doctors refuse to accept the test results. I don't want another biopsy, I don't want to argue about how to treat it when we know what works. I don't think I'm asking much... treat it to medication-induced remission, and treat in long-term with the absolute minimum it takes to maintain that remission. This is what medical literature suggests because of the long-term risks of under-treating this. And even if it weren't, it's the only way to get function back and I just want my body back, damnit!

I've been using suppositories twice daily, so everything is pretty well moisturized. Right now I'm working through some ozonated olive oil, but after that I'm switching to probiotics in coconut oil. Might do the probiotics forever. My my mother suggested asking the woman I saw during my pregnancy... so I sent her a message and I guess if she does Gyn outside of Ob... I'll wait to have her run a swab to recheck and move forward that way. Otherwise... I have no idea what to do. After a second round of antibiotics, I absolutely want to have it tested. The pelvic(/back) pain continues and I'm currently accepting this as somatic. The thing that kind hit me concerning somatic symptoms though was I saw this post where this woman was talking about some issue she was having (I don't even remember what it was) and one day just lost her vision. She went to the doctor and they diagnosed the primary disease and said the vision loss was somatic. Obviously, she was offended and the doc apparently said "the symptom is very much real, but the reason it's happening is because you've ignored this illness so long that your body had to do something serious to get someone's attention"... and when the primary condition was addressed, she regained her eyesight. (Absolutely wild symptom to be somatic though!) So, hear me out: this started around the time I got diagnosed... which was like... my third doctor for this damn thing and I was distressed because I was dealing with a condition that wasn't really being managed. It went away when I had the inflammation down on steroids, and now that I'm not treating it, it's back. My body is screaming for this to be treated, right? I mean, also... pretty sure this has given me vaginismus and the likes (painful muscle spasms) cus I've had the spasms for like idk at least a year now. I get fuck tons of spasms when I'm anxious... like literally had a round of them through my back and legs for at least five minutes earlier... and my muscles are still trying to start up again. Sometimes I feel like it's my body's way of getting rid of the anxious energy. That's not even a new thing... I think I've had them in some form most of my life (sometimes I see my son exhibit the same behavior when he cries). What a weird system the human body is, eh? And people say mental illness isn't physical. Pfft. Thanks for chatting with me. I'm going to try to retain some hope. I think if nothing else, I can get my derm to prescribe Tacrolimus for the foreseeable future... I just gotta get to the point that I can add that in without an infection to tumble the whole house of cards (the Tacrolimus burns really bad till the inflammation is down significantly, alone that takes two months in my experience). I think the probiotics might be able to help me get there. Jfc I hope.

Right?! That's what I'm saying! It was a pivot from blaming my androgen levels (which have been high for well over 10 years) and I said I was sick of people blaming this on hormones, and she goes and blames the lack of periods. She explained to me that the area is red not white and that she knows LS to be white (which obv isn't wrong... but you're not going to see white when it's constantly flaring... I explained to her that when the inflammation is down on steroids the area is ghost white from my vulva to my anus - she then said it might be steroid atrophy but she doesn't see evidence of that (which is visible capillaries)). Most photos you look up from medical literature there's patches of red adjacent to white patches and it's known that some people diagnosis needs biopsy because it's so red and the white can't be seen till the inflammation is down (which is exactly my experience since it's always flaring to some extent). I do have co-occurring infections, but clearing those doesn't clear the redness. I've had candida once and we bombed it with both topicals and systemic anti-fungals. Everything else was normal till the BV (I mean, excluding the biopsy which showed LS). And I'm not expecting an immediate DX. I already have the DX. I've had this for almost 6 years and been DXed for maybe 6 MONTHS. Believe me, being distressed is a pretty logical response to having this. I recognize it's a thing some people with HA fear (the infection personally scares me more because I've had a UTI that spread to my kidney and liver over the course of maybe a month), though I can say it's not as bad in terms of destruction as people might fear from reading literature on it. The distressing thing for me is just the non-ending discomfort and the absolute destruction of my sex life... as well as how damn bad it is when it's at it's worst (I'm serious, paper-cuts... and lots of them all over the area, it's fucking excruciating). I feel you on the mental health diagnoses though. Holy fuck I was DXed with Schizophrenia at one point and placed on medication that literally landed me in the hospital (I left my wedding reception to go to the ER). But that's actually the thing is that teasing out why I have psychotic symptoms took a lot of knowledge about why and when they happen. Turns out I have what's called psychotic depression which responds wonderfully to NSRIs. Antipsychotics destabilize my dissociative disorder, and anti-mania medication seems to do anything from worsen my depression, psychotic symptoms, dissociative disorder... or just generally turn me into a zombie. I've been on several types of both and it's never gone well. I once had a psychiatrist try to pull the "I'm the professional and I know best" and tried to tell me I needed an antipsychotic and an anti-mania medication on the basis that my father was bipolar (my mother has plain jane depression though, which never seems to matter even though it's much more common). I used to leave her office crying... every damn time... because I'd explain to her my experience and she refused to listen, defaulting on the same thing as psychiatrists in inpatient that diagnosed me after 5 minutes of talking to me... as if that's enough time (I do recognize it's a necessity because of how crisis inpatient works, it's just not a great way to diagnose and treat chronic conditions of any variety). Like... this is still where I'm coming from. If a doctor wants to treat me with the bare minimum of respect, I'm willing to try just about anything they suggest. I recognize it's trial and error. I've had my derm suggest antifungals for my feet because my rash there changed and I had suspicion but also know it's best to treat an infection first even if there is an inflammatory condition underneath because steroids will cause infections to spread or worsen while masking the symptoms. When anti-fungals didn't work though, he listened to me and sent me a script for 2% hydrocortisone (not actually sure I needed that strength tbh, just wanted a doc to tell me how to do it). My rheumatologist took me through 2 meds before hitting one that did anything. I told my nephrologist to give me what tend to work, and his treatment plan has been brilliant. I'm not telling them what to do. I do get distressed when tests come back abnormal but inconclusive. I don't have proof of my endoscopy anymore, but my rheumatologist at least believed me about the results (yet this gyno doesn't believe me and I do have the results... though I had a panic attack and couldn't figure out how to work the app... I was literally sobbing at this point because she was telling me she didn't believe me and won't treat and I was extremely willing to get tested for infection cus I knew I still have one!). Oh, and on that note, good news: since my insurance wouldn't cover topical, I was able to get her to send in systemic medication which should help if it's ascended. I'm still nervous though, so I'm augmenting with ozonated oils (which do great against bacteria and yeast since they basically produce hydrogen peroxide) and probiotics... gonna bomb the fuck out of it with probiotics cus I'm a bit concerned about drestroying my flora and how much I'll need that to prevent another infection in the future. Wish I had a gastroenterologist to ask about taking probiotics for basically the rest of my life (though I can't think of a reason why that would be a problem, especially using a broad spectrum that should help promote a good balance of good bugs). So... at least my anxiety about that is going down... a little. I may have spent a little too much time thinking about how I'd take time off work if it turned into a serious infection... and did not come to any good conclusions. The pain has been sharp in spurts and everytime it jolts me, I get a bit scared that it needs to be treated aggressively or I'm going to end up with a real problem on my hands... especially when this bacteria can cross the blood-brain barrier (yes, I'm dumb... I went down the rabbit hole about how bad this bacteria could get if it's left alone... I suspect that would take ignoring it for probably like a year since I've heard of people having it for six months and it only making it to the fallopian tubes - it's just not very virulent... I just don't know how much easier it'll be in my body!).

You are right. The thing is, I do know all that. I know WAY too much, actually... but I'm also a bit cynical about some of the conclusions that practitioners have come to about this condition. I know where and how to get good information, I mostly stick to websites I was introduced to in medical coding classes that are built for medical professionals, as well as things like PubMed that host research studies. I am also known to watch lectures from colleges and leading medical experts in whatever field. I don't bother which much else unless I'm just looking for some base information (Wikipedia isn't an uncommon jumping off point for me tbh because it generally is good information that will give me a rough idea of what I'd like to further research via validated sources). It effects mostly women (1:10 women:men), and an estrogen deficiency is assumed based on the distribution of ages where this is most common (pre-puberty, post-menopause). The thing is, if this were the cause, people my age (30s) wouldn't get it, nor would men. I can't find a single study proving (or even looking into) estrogen deficiency in Lichen Sclerosus (there isn't even a damn observational study, nothing even behind a paywall). There are very few studies on using hormones *at all* for LS, and the most weight goes to testosterone use, but newer studies don't find it's all that effective - and ditto with estrogen though it's still a common adjunctive... which leads me to believe that this is continually used in anecdote, which isn't science! This is an absolutely common thing with issues in the female reproductive system - estrogen is often suggested when there's little to no proof it works. Don't get me wrong, I've heard anecdote. Usually women who have poor lubrication (which I don't)... which estrogen absolutely helps with (fuck I'm not even saying it doesn't help some people, I'm saying it's not the reason I have LS and it's not a fucking cure for all my vaginal/vulva ills when the causes of those are fairly straight forward). Guess what they don't do to men? They don't offer them hormones, the don't suggest it's hormonal... they just treat it with steroids (to be fair, it's easier to treat in men because of the anatomy). The leading speculation for men is irritation from urine, which is fairly plausible. Nevermind that it's literally autoimmune, with antibodies(!), caused by overactive T cells. Women who have this condition are way more likely to have other autoimmune conditions (which I do). This HAS been proven time and time again. The only hormonal link is that skin effected by LS has less receptors for *testosterone*, suggesting the skin is less sensitive to T, and that does not suggest in any way that it responds to E. And this started when I was pregnant (which is an estrogen-rich state! To be fair, it's generally also a state of immunosuppression, but my skin went absolutely bonkers the first trimester, including my Psoriasis... my arthritis was great though... lol except the last trimester fucking my back (that's not arthritis, I know... I'm just having a chuckle at the expense of my spine)). Doctors need to listen to me when I say this, but they don't - they tend to look shocked when I say it again because they clearly didn't hear me the first time. I've so far as had a nurse suggest BV is caused by an estrogen-poor state, when it's the most common vaginal infection in women ages 18-35 (especially around menstruation)! And I got BV after using steroids, which predisposes the area to infection... probably because I'm a moron who tried to have sex during treatment because I hadn't in an entire year. (To be fair, women who are post-menopausal are at an increased risk of BV, but it is by no means linked to estrogen deficiency, it's because estrogen deficiency fucks up the vaginal pH (as does blood) and makes it easier for harmful bacteria to overgrow... steroids just suppress the immune system, but same result... infections are very common in both inflammatory conditions cus the breakdown of the skin and because of immunosuppression if immunosuppressants are used). I've literally had practitioners try to push Estrogen on me since I was a teen because I had an abnormal menstrual cycle (which is actually pretty normal in teens and usually normalizes in the 20s). So, yeah, I'm a bit critical when they start blaming everything under the sun on my perfectly normal estrogen levels (I have spoken with my endocrinologist about this who assured me that my levels were normal). This gal tried to tell me that lack of periods causes vaginal atrophy, which is absolutely fucking ludicrous (I haven't even looked this one up because I'm tired of trying to track down studies that don't exist about ridiculous things practitioners say... and I don't even want to go down a rabbit hole about that right now... lol, if there's even a rabbit hole to go down). At that rate, pre-pubertal girls should have vaginal atrophy and be at a much higher risk of pelvic floor dysfunction... but don't and they're not! Vaginal atrophy IS very much a hormonal issue and IS caused specifically by a lack of estrogen, but it's not seen in pre-pubertal girls. She's basically trying to claim that I have vaginal atrophy because my testosterone is elevated and my periods are suppressed, when that's just not how it works... and there's literally no evidence of estrogen deficiency (fuck, my pH was even normal)... and that rather than having Lichen Sclerosus, I have vaginal atrophy... when I literally had this biopsied... and my problem isn't even inside the vagina (right where the hymen used to be is where it stops). I have no idea where the hell she's getting her information. I feel like I'd have to make one of those charts like you'd see in a detective show to figure out where she's coming from. I tried the estrogen, by the way. Burned a little and didn't help. Got BV while using it. *Shrugs* Full disclosure, I'm just draining... If I sound like I'm mad at you, I am not. Ugh. I don't think I should have to repeatedly make my case about what I've experienced. It legitimately bothers me when they act like I'm lying. I might be crazy but against my better judgement, I make a fucking point to not lie to practitioners because my brain tells me that if I did (regardless of how or why) I'd be malingering... which my OCD assures me makes me a terrible person. If I hadn't been so transparent with this woman, this could have been avoided. I didn't have to say anything about having suppressed my periods or having been DXed with PCOS (read: hyper-androgenism). But she asked about my meds and what other things I've been DXed with, and like a moron, I told her the truth. (I went in there so hopeful...)

I'm so stupid. I'm not willing to settle for this. I'm not willing to be treated like a child. The vast majority of my practitioners have basic respect and are willing to have an honest conversation with me. I probably like to speculate more than the average patient, but I want to understand what's happening. Some of them, I don't think they like patients being educated... they want to be the authority and tell people what to do. I've had plenty of conversations with plenty of practitioners speculating and they are generally ok with placating me, I guess. I'd like to think that I generally still respect that they have *experience* I never will... but unless they have the condition (and like, how it manifests in my body), I also have *experience* they don't. Maybe it's why I like doctors and researchers that follow the line of thought that the patient is the expert on *their* condition. Nevermind the fact that I just... I don't trust a doctor that doesn't follow the science and has convinced themselves that they know everything. They are trained, educated, knowledgeable, and experienced in diagnosing and treating, but we're *always* learning new things about fucking everything... and when what they say contradicts every fucking world expert on the disease, every study, all the literature... I feel like they're flying by the seat of their pants by what they're told in clinicians meetings, etc (and I have been to a seminar... Jfc sometimes they're fucking bad (I am assuming most are not as bad as the few I've attended) - 0 sources and lots of speculation). The things this woman said... doesn't look like active Lichen Sclerosus... as if she's never seen the disease in the *inflammatory* stage, as if there aren't photos of the disease with red? As if the biopsy is wrong and I'm just dogging for some topical steroids? She mentioned the opening because it's inflamed and then claims it doesn't effect this area, except it's well documented that it effects the exact areas where I have redness - as if it's not the classic figure 8. Idk how she has somehow come to a conclusion that contradicts all of the literature, studies, and lectures on this disease (which I have reviewed, cus I'm an asshole like that... damn me). She seemed offended when I brought up a case study that found it as far back as the cervix via biopsy, admitting that clearly this is exceedingly rare and that's why it's a CASE study (and I'm not even suggesting it's there for me, I'm suggesting it's where it clearly is which is a classic distribution! Which makes it so funny that I didn't think it was LS before the biopsy). Fuck this. My husband tells me he hasn't lost hope... and I think "I have lost hope, I'm just not willing to give up yet". I'm fairly certain the infection has ascended because I'm pretty immunosuppressed. In the past, a kidney infection was dull and that's what this is for the most part. The only things in this area of the abdomen are: the reproductive organs, part of the urinary tract, and part of the colon. The ache isn't much so idk maybe it's not even that bad. I think I'm going on 3 weeks with this at this point, but the days blend together, so maybe it's just two. Treating this infection topically seems foolish, but idk maybe direct application of the same drug we used previously is gonna go great! I feel like she's *trying* to do the wrong thing... like when my PCP suggested exactly the wrong compression garments for POTS and claimed I just needed to add more salt into my diet - she thinks I'm making it up and dgaf about my wellness. Like I want to fill the antibiotic just to have it around (but it's probably at least $60). Because I *am* crazy I guess. This whole thing is crazy. LS finally did it, it's made me insane... and idgaf. 6 years is too fucking long and I know my fucking body.

Idk. They generally don't do surgery around the vulva for it unless they're just correcting damage it's done, but that kind severe damage is rare an occurs over many, many years of untreated disease. I don't have that going on... oddly enough 5 (damn it's actually 6) years of this doesn't do much (at least not to me). Yeah, no matter what I'm fucked at this point... except not really cus... ya know... inflammatory skin condition in my genitals. I just want to say fuck it so much... but eventually the inflammation will build back up to the point that I can't function and the idea of living like that for the rest of my life with basically only Aquaphor as relief genuinely scares the pants off me. It's legitimate torture and I think I'd rather die (not that I'd do something stupid like kms but jfc that is not a life worth living with constant paper-cut kinda, intensely raw skin in an area that gets a lot of friction and irritation by virtue of what it is. Thank you for replying (genuinely). Idk what I'm doing with my life. Getting a new job has been fucking brilliant though (really really nice actually), so that's something!

I never suggested it's cancerous? Lichen Sclerosus is an inflammatory skin disease that causes scar tissue to form, generally seen on the anogenital skin. Technically it is a cancer *risk* if untreated, but that's still only like 3% (of what is like a 0.25% of the world pop that has LS) so exceedingly rare even for cancer to form over LS (hey, that risk is basically 0 with treatment, but that's not the fucking point!). The point is that it's extremely painful just walking around when it's at it's worst, I haven't been able to have sex in basically 2 years, and I'm just fucking distressed with having dealt with this for 5 years. Idgaf at this point if it DID turn into cancer. Maybe then they'd cut the LS out (I jest, but they do circumcisions for men in attempts to do this... it doesn't totally work but I guess it does offer most people significant relief). Fuck, at this point... the area isn't really functional anyways so why not just get rid of it. I'm building a burning fucking dysphoria for my anatomy, fighting a disease that will eventually destroy it if I don't do something about it... and that's not even the point either. I think this is one of the moments my therapist would even look me straight in the eyes and say "you have real physical symptoms". Every fiber of my being wants to jump head-first into the "Nothing's wrong, just ignore it because you're just crazy" hole. I'm always at the same place here. I had them take three fucking pieces of my vulva to diagnose this. It can't be anything *unless* it's Morphea (Scleroderma) because that's the *only* histopathology mimic, and that's *worse*. And I don't think it's Scleroderma (I was DXed with early LS, which doesn't really look as much like Morphea anyways). Lichen Sclerosus is far more common. And there's the call telling me that the BV test was positive (I didn't answer) and they sent in a topical and like a fucking moron I was like "sure".... My insurance doesn't cover topicals. *Facepalm*

Man who knows, I've already considered that the pelvic pain is psychosomatic... though I think at times it's a bit too intense for that (I mean idk, once heard a story about someone who's psychosomatic reaction wiped out their vision for a day so it's entirely possible). I suppose technically anything could be psychosomatic. If you're trying to imply that the LS is psychosomatic... that's about as bad as pretending it's not real because it's red... biopsy doesn't lie. *Shrugs* either way, I'm screwed. 🙃 What a delight /sarcasm

Usually trigger tag for skin and genital issues. . . . My hope is gone man. I went in to that gynecologist. She, too, said it doesn't look like Lichen Sclerosus (biopsy is fucking definitive) because it's red, not white. Tried to blame steroids after I was clearly not receptive to blaming hormones and before admitting that it didn't look like steroid atrophy and I really haven't been using them long enough to cause that. Tried to blame the lack of periods for the redness, except I suggested I may have had one a couple weeks ago (and if it wasn't... that's a concern since I passed a fucking clot! THAT WOULD BE ABNORMAL VAGINAL BLEEDING WAY BEYOND SPOTTING) Suggested infection. We've been down this road, though I'm willing to go down it again... flora be damned (I bought probiotics in suppository form for this reason... if we're gonna trash my biome... I'm gonna need that lactobacilli). One glance at literature tells even a novice that redness is a feature... be that texts or photos of the disease. I... just fucking need to do this myself... But I'm nervous about that... I want someone to oversee just incase an infection crops up... though I suppose I could deal with that myself considering ozonated oils generally do a pretty good job in studies. But I don't fucking want to be my own doctor so much as an educated patient who's an active participant in their care. I'm fucking terrified. I don't ever want to go back. I left there in tears. I didn't even check out. I cried in my car for most of an hour till I had to go to work. My pelvis continues to hurt. Idk what's up with that. I guess it doesn't matter. It's not as bad as it was last week. My eye is doing the thing looking bruised. I feel beat, but mostly emotionally. (Exhausted as usual... I had no appetite I guess cus I don't think I've eaten anything (tried to have some jello) and as a product I've been very nauseous (idk chicken or egg there)... this is normal) I tell myself I deserve this. A voice whispers to ignore it and let the disease try to progress. Another voice whispers "just do it yourself, your dermatologist can keep you in topicals and maybe you can achieve OTC steroid levels. But I feel despondent. I feel hopeless. I want to send my therapist a message but I've bothered her a lot lately and about this (idk probably not a lot... Messaged her to talk like twice in the last month but that's a lot for me since I never do that). I'm fucking tripping that a doctor would tell me an inflammatory skin condition wouldn't cause redness, especially in one that's known to cause redness in basically any fucking text you read... claims it doesn't effect any of the mucousa when it's well known to effect the areas I clearly have it. I feel like she's lying to me. Most of the things she said contradict even recent studies. She tried to give me the "I'm the doctor and I know better" shpeel... ignored everything I said (clearly as she made excuses that I refuted earlier in the conversation). I can't go back to this doctor. I went in with an open mind, hopeful that this person would just help me out. That got entirely shattered. And now I don't know what to do. I'm an absolute fool. *Screams*

Penny, I am diagnosed with Psoriatic Arthritis, primarily effecting my hands (at least that's where we found the bones thinning - currently non-erosive). CRP was on an off around 15 (supposed to be under 3, but this is a relatively mild elevation... Kidney infection for example my CRP was >1000). I felt like crap. Still kinda feel like crap but because I haven't been taking the Sulfasalazine as reliably as I should (also take Humira which without Sulfa keeps me at least feeling half alive).... which is maybe hilarious cus I keep convincing myself I don't need these meds and I'm probably just pissing off my liver more (ALT is slightly elevated perpetually but docs don't seem concerned (I guess it's not really a problem till it's like 3x the upper limit anyways) have had elevations in AST, Phosphate, and Protein but those eventually went down). So rheumatic disease already a thing. I just... I wanted a name and I pushed for the diagnosis of Psoriasis based on this "athlete's foot" I've had for idk 10+ years. It ofc responds great to hydrocortisone but doesn't respond to anti-fungals, so it's inflammatory. DM just can have what's termed "mechanics hands" and "hikers feet" which is a dry, scaly rash over the bottoms of the feet and palms of the hands... which I have though it's less in my hands now and starting to slowly retreat from my feet (still stuck to my nails) while I do absolutely nothing to it because I don't really care unless it's hurting (be that cus the skin split or it starts bleeding (usually under the skin there luckily but it makes my feet VERY tender)). Sometimes I wonder if it's retreating from the skin because it's going more internal. I thought at some point things would stop changing but it feels like it's in constant flux with what it does which makes me feel absolutely insane - I DO NOT want new symptoms to wonder or worry about. But I can't will myself into bleeding under my skin and that's like... the only concrete thing I can point to and say "I couldn't have imagined this". Pain, numbness, whatever... all sorts of things could just be in my head, a trick of my nervous system sending weird signals cus it's driver (my brain) is a dumpster fire. Sometimes I convince myself all the stress in my head and my body must have burst some blood vessels. *Shrugs* My therapist once told me I have REAL symptoms and it was relieving to hear, but my brain snapped back at some point. Maybe it's funny because I haven't even looked into what high blood pressure could do to the body. But... if I took blood pressure meds that would probs make me faint cus... Postural Orthostatic Tachycardia, if I didn't also con my way into that diagnosis as well (the treatment worked though and I'm weaning off the meds... it's also very common since my variety is hypovolemic (low blood volume, fits the anemia too which is still relapsing but never as high as it used to be)). I just... don't really understand why I need two meds for my autoimmune condition. Like hats off to my rheumatologist for being willing to treat by symptom improvement rather than numbers but... maybe we should just treat by numbers and I shouldn't be on so many drugs anyways? Idk. Idk for sure and that makes me want to dig, I guess. I want something concrete and until someone biopsies something or is able to do a test that's a definitive... I'm gonna wonder if we got it right. It feels like everything we're treating is largely subjective and I HATE that uncertainty... like icky feeling crawling in my skin. The LS biopsy was definitive. It couldn't possibly be anything else unless there's an overlap with Morphea (Scleroderma/SSc). And I felt GREAT about having that "It is absolutely this"... throws me right off having a different doctor come in and say "it doesn't look like there's anything wrong" and just sends me right into that same old tail-spin. I wanna wrap it up in a nice, neat box. I wish the human body were so organized. 🙃

I can understand being concerned. I had a hobnail hemangioma not too long ago that I convinced myself had to be some kind of cancer cus it kept puffing up and bleeding. The doc did biopsy it, but I would have just as easily gone for burning it off because I was beyond the point of dysphoric. Had the same problem with a mole on my pelvis... which I did burn off cus the doc didn't see the point in removing it. What I can say is I'm still very much alive (hey, I'm only dying emotionally!). I'm sorry your brain has you running in circles about that. It's rough when our brains get absolutely fixated on a thing and scream at us for answers. I suspect your brain will be coming back to that for some time. I hope for you that it eases quickly and the anxiety leaves you alone.

Mark, you're totally right but I did talk about this with my therapist and I did make the decision to quit. I put in several applications and was hired by a place that will pay me more per hour and then put in my two weeks. I feel guilty and just... like I'm absolute shit, but also still regularly just feel like "I can't do this". I'm terrified for no particular reason except that I don't have the accommodations to do this job properly (and by that I mean mangers that are willing to go through everything with me and properly train me, and not get angry when I'm still there 10-20 minutes after my scheduled clock out time to finish my tasks (and also try to punish me by making me stay later?)). I spoke with the other folks that are doing the same job who have said several months in they're still getting their bearings due to the lack of instruction, with the managers acting like this with them even with twice the workload. The day I decided for sure, I called myself stupid on shift because the manager was talking down to me and my brain fizzled... he told me if I talk like that he'll kick me out - he was angry and that put me in a full-blown panic attack... one of many I've had there. I just... I can't get out of this hole like this. It feels like everything I do is wrong and it makes me want to hurt myself (in whatever manifestation - unfortunately often that turns into not taking care of myself (esp taking my meds)... self-perpetuating cycle. In the meantime, while I've done two days on the new job, I'm terrified that they're not going to ask me back because I haven't gotten the schedule yet... but have one more week left at the other place (and every night I seem to convince myself I'm going to call out because I'm dreading it so much... and then I wake up in the morning and go to work and just... want to run). I think yeah, my anxiety is running the show but I'm scared both to ask for more Klonopin and to take it more often (at this point a last ditch effort to not completely lose it... if I have it with me) and my poorly-medicated depression has put both my tolerance for stress and my motivation to do better in the damn toilet. Penny, I have definitely heard of the link between Limes and LS, and it's something I've considered looking into but to my knowledge I've never been bit by a tick. I've seen a tick... exactly one in my entire life many many many years ago, on a dog. Supposedly we have ticks where I live but I've never seen one here. *Shrugs* We did have to start antibiotics because I did come back positive for a vaginal infection like I suspected. Luckily it's nothing serious (very common bacteria for the area, usually doesn't spread upwards)... and I guess unfortunately this wasn't the antibiotic I was prescribed so... Idk. Makes me kind wish I had taken that amoxicillin my dentist gave me for what I was very certain was just my body being my body (he complained that a scar from a tooth extraction was still quite red and I'm just "Bro, my body does that. Scars stay red FOREVER" maybe it's a koebner thing from the LS or the Pso, but it's pretty much always been like that?). ... (Feel free to not read the below, I'm just... Idk, processing shit? It's a lot of rambling... and I figured this is just torture for whoever reads it so probably best to not even make a new post and clog up the board) ... had a fun experience that threw me back into the wondering though. Obv when I got DXed with LS, I kinda went nuts researching it... and looked way too deep into the autoimmune overlap. I keep gravitating to Systemic Sclerosus and Dermatomyositis, which with LS is one of those "every square is a rectangle but not ever rectangle is a square" kinda things. Like those two overlap a ton, so it's not surprising they have things in common. And LS isn't strongly connected to either but both of those see higher instances of LS than the general population (Idek how they come to these conclusions, SSc & DM are pretty rare (1:10,000 kinda thing I think)? They're also the leading cause of Pulmonary Fibrosis, which killed my father (note: he was much older than me when he got sick and I'm unconcerned at worse, cautiously considering quitting vaping because of it though, but I think that might be a positive thing... If I ever do it). My mom today noticed a symptom that I noticed some time ago. And I'm like... shocked? Embarrassed I guess when she brought it up. Basically she said my eye was swollen and half closed and I just laugh "yeah it does that...". It's one of those things that makes me wonder about DM, and if she seems concerned it makes me wonder if I should ask a doctor? But also... don't want to ask a doctor about several year old symptoms that aren't bothering me when several year old symptoms that DO bother me seem invisible. Not even obvious, right? Do you know which eye is swollen? (hint, both, but I'm pointing out the eye with the obvious spider angioma) Unfortunately when this first started happening, I didn't think to take a picture because the first couple of "flares" was the worst (It looked like someone had punched me and given me a black eye). The eye with the angioma always is the worst, but I regularly look like I haven't slept in weeks even when I've spent the majority of the last few days sleeping. I'd think something of it, but people generally don't notice and I just assume it's a product of fatigue... and I'd think nothing of it but it really does look like a bruise sometimes and regardless of color (always some shade of red or purple, margins are always purple now) sometimes one eye is overtly more swollen than the other that it makes my face looks lopsided. I've been building vascular tumors for years (and I mean I have a lot of them from head to toe), they started showing up when the joint pain showed up in my wrists but I was always thinking about my liver in those days cus I was drinking pretty heavily. The last year I'm getting less angiomas and more spider veins (I DO NOT mean spider angiomas (to my understanding are raised and small not flat and spanning upwards of a few inches)... and the also seem to come and go (I guess they occasionally dilate and eventually get stuck that way?). I tell myself that's rosacea, which I'm apparently exactly the age for (30s is common onset)... on my cheeks, nose, arms, and more around my eyes (new tiny angiomas on the other eye if you can spy them) and lips (where the margin is disappearing slowly). This along with DM having possible skin symptoms that mimic the variety of Psoriasis I'm DXed with, and having redness around my face, neck, chest, and over most of the joints on my body (fingers, wrists, elbows, knees, ankles, toes) with scaling and what seems to be that I'm developing knuckle pads... and just the bleeding cuticles, nails, and whatever part of skin decides to bleed this week (usually my hands, often the LS too). (A la, Gottron's, Heliotrope, V-sign, and Arm-Sign, all pretty specific... though Butterfly Rash, which isn't uncommon in DM but is a SLE thing) I'm fixated on Antisynthetase syndrome - a variety of DM that usually presents with joint pain (+ all these skin signs that mimic Palmoplantar Psoriasis, Raynaud's (which I was recently DXed with)) and can by lesser on muscle symptoms... though for about four years I've been having these new(er) pains that seem to come from my tendons and muscles along with the tendons tightening like contractures that eventually go down after a week and seem to get worse when the Raynaud's is triggered. I've also been having what I guess is exertional compartment syndrome (ie, when I use my muscles too much they get stuck contracting then swell, get weak, and hurt till I rest them). I tell myself that's all just repetitive strain, and maybe it is... like tension from having my elbows bent often and lifting heavy things. I guess if I somehow had a DM rash on one side that'd be bad, but my rheumatologist once told me bilateral just means on both sides, not perfectly symmetrical... so I'd guess worse on one side (as per my eyes) is still bilateral. And I want to bring up this illness and ask him about it but it feels like if I did, I'd just come off as digging. I was anxious af to every ask him about the Raynaud's because he'd once asked me about it but I couldn't seem to trigger the white phase (now it's shockingly easy, just grab something out of the freezer... LOL). I had literally done the cold water test and it was negative four years ago (it sure is positive now, though I still can't seem to get a whole fingers to go white like photos on Google... they always end up with a white line and the tips purple... or the whole hand purple, lol). And idek why I'm saying this. It's been on my mind and my therapist awhile back when I brought it up asked me if I'm anxious about my health (I mean, yeah), which I knew was a fishing question for diagnostics... and also: I'm terrified of not getting treatment for shit that's intrusive and bothersome... DM doesn't make me anxious... maybe MS would and SSc sounds evil af... but since being DXed with LS it's occurred to me that realistically autoimmune doesn't read the textbooks and often moves so much slower than it sounds in literature, so years can pass and nothing really serious happens so that's made me think "I could have an autoimmune condition that *sounds* objectively terrible, even these that sometimes kill people pretty quickly (like SSc) but not have a terribly aggressive case". Hence my pondering. Which is like... fuck all these things are pretty much treated about the same sooooooo.... I'm already treating it even if the diagnosis is wrong... so... what does it matter what we call it? It doesn't. It doesn't matter at all. I'm just curious. Maybe part of me wishes it was something "worse"... but also... I don't? There's no way I'm convincing anyone to test my blood for obscure antibodies that could still be positive despite a negative (ELISA) ANA test. And even if I could? And it turned out negative I'd just feel insane anyways. And if it were positive... what even would I do with that information? (Nothing) There's no silver bullet waiting for me at the end of that curiosity and I couldn't possibly read more... yet I do... cus I'm obsessive af. *Shrugs*

I decided I'm going to quit my job. Too many panic attacks. Haven't decided how I'm going to break it to my boss. Kinda feel like a loser, but I stuck with it till it started fucking with my mental health and I've been desperate to get out for at least a month. The fucked thing on my part is I just got a promotion like two weeks ago but also... it's been worse since changing positions. My social anxiety was kicking my ass already and triggering my depression. The last two weeks I've been so frantic I've been having thoughts about SIing, going back to booze (to be fair, I had a slip about three months ago... started this job like six months into sobriety and fucking jazzed about the future), and... killing myself. I haven't really gone down any of those holes, obviously... working so damn hard to hold myself together and tell myself that it's gonna get better. I can't control much of anything. I can go get a better job though... and I'm gonna drop in on the place where I put in my resume in hopes to light a fire under their ass to hire me. I feel like I don't deserve the raise in pay that I'll get, like someone else really deserves that... but I also don't feel like I deserve anything good right now... but I'm gonna ignore that voice cus it's a fucking asshole and I can't let my mental health fall apart. I gotta fight for it. I gotta fight for me. Imma feel guilty about it like everything but I'm gonna do it.

True that. I have this bad feeling like they're not even going to run the swab. I woke up thinking about that. It probably doesn't matter. Even if I have an infection... what's that gonna do, right? I don't really care if it goes up and wrecks shit (genuinely dgaf about my reproductive organs... have one kid, don't want a second). In the meantime, I'm bleeding again for no reason. Suppose I should be grateful it's not much and it probably won't last long, but it's the third time in the last month and... just... that's not normal pretty sure. Doesn't help that I'm also stressed out about work and wanna quit my job. Obviously not doing a good job at taking my meds. I feel like everyone hates me. I feel like I'm a failure, an embarrassment. I feel like the only safe course of action is to hide from the world. I wish I could erase the entirety of the last two weeks.

Unfortunately for a person with my anatomy and LS in the area I do (which is where it usually likes to be), a gynecologist is the correct doctor, though I have spoken with my dermatologist about it (another doctor that said it's not that bad - then at the time we didn't know what it was). Nevermind that I had some very grey (I mean like really really grey) discharge and apparently have some kind of anxiety brewing about topical steroids and vaginal infections... so I asked for a swab for BV which the gal tried to suggest would clear up from estrogen that she's been trying to push on me through the nurse that did the biopsy but isn't really found to be terribly helpful in LS (it's an adjunctive with really anecdotal evidence behind it that practitioners continue to grab anyways - the hormone that has weight behind it for LS is testosterone because of it's local effect on skin, but it's not used as often because most people with LS are women (it's like 10:1 women:men) and steroids work a hell of a lot better). Estrogen promotes epithelial growth, and can break up fusing (which I don't have, and can be prevented with plain ointment) and increases lubrication (the later of which isn't a problem for me esp when the LS builds blisters that pop (hence the ulcers), testosterone strengthens the tissue so it's more resistant to tearing. The damn thing is caused by T cells and antibodies to ECM-1 (ie autoimmune) and reduced testosterone receptors in the basement layers of the skin. Hormones did jack shit and she wants me to use them for longer than the initial coarse. Guess I should be grateful she gave me more steroids. Hopefully with some creativity (cut the damn things down with more petroleum for a lower dose) and a slower taper I'll finally be out of this nightmare. Which is like... why I don't even feel like it's worth it to go to another doctor about it who's gonna have to do an exam and I'm gonna through this bs again. As long as I have the tools, I've read both the US and Europe's gold standard guidelines for treatment, I know acutely the risks of steroid use (and how this condition effects some of those risks), and I know how my body responds to steroids and withdrawal. I'm gonna be able to better guide myself through that than any doctor. I mean... I'm gonna go. But fuck I don't even need this, but I need someone to oversee and prescribe treatment for the foreseeable future cus LS is lifelong when it occurs in adulthood (kids can have spontaneous remissions but don't always). I fucking hate this. I don't need blood tests or anything, I just need an appropriate amount of steroids for an appropriate amount of time (a little past the point that the inflammation is all down) and an appropriate taper (slow, step down) and management strategy (steroid-sparing agents like Tacrolimus, which I have from my derm and have been given some instruction on how to use with the steroids to keep the steroid dose as low as possible). Easy peasy, lemon squeezey... you'd think they'd like it when a patient does their work for them. *Shrugs*

I don't know where else to say this. Medical shit is not what anyone wants to hear about... not that you want to hear about my shit. *** May be triggering if you have anxiety around skin junk or genital stuff. *** Last year I was diagnosed with Lichen Sclerosus - an inflammatory skin condition that has a predilection for genital skin. This was diagnosed via biopsy by a nurse practitioner. I've most definitely had this for 5 years. It showed up when I got pregnant, and was only on a tiny area but has since spread to my groin and thighs in the last year. I get ulcers on occasion and tested positive for HSV-1 ("cold sores") not HSV-2. I had an occurrence of one and tried to get into the gyno to have it swabbed. I've been tapering off the steroids, which resulted in a rebound flare (hence why I am looking at the area)... couldn't get in for a week, ulcer disappeared, ofc. The nurse looked at me, I got a look like I'm absolutely insane. She had to be reassured that this was diagnosed by biopsy (ie, yes this is definitive)... and came back into the room and told me it doesn't even look like I have Lichen, the area looks fine. It's ludicrous. I know I'm swollen. She'd know that too if she'd try to insert a speculum (which is not necessary and I don't want anyways cus OUCH... but just like when I came in I doubt she could find my cervix cus everything's too swollen to visualize). I think they think I'm crazy. I'm scared they think I came in aroused and that's why everything's swollen, like some kind of creep cus I'm queer. I hate this. I hate being me. I hate this body. I hate that apparently it's INVISIBLE - whenever anything is wrong with my body, it's just fucking INVISIBLE. It took me FIVE FUCKING YEARS to get someone to care enough to figure out what this is and now I'm told it doesn't look like anything's wrong WHILE IT'S FLARING? The skin is fucking white under the redness. Apparently that makes it look like nothing? Like some ridiculous mimic disease that pretends to be normal... or a fungal infection (I got three of those that aren't effected by even systemic anti-fungals, shocking!). I just want to be like "Yeah, sure, I'm not sick at all, I'll just stop taking all of my medication that I've struggled to get and let's watch me crash and burn". I tell my therapist I'm tempted to SI and quit my meds... she's concerned about me SIing even though like... isn't quitting my meds worse? Cus that would lead further to delusion and depression and pain? But hey, that's all invisible too so maybe that's not real either... eh? Ehhh??? I wanna bang my head on the wall like a child. I don't want this. I don't want to be like this. I don't want it to be like this. Nothing matters. None of it matters, right? If an infection doesn't matter, inflammation for no reason definitely doesn't matter. It's not destructive... yet... so who cares? I fucking care. It's my fucking body and I have to live here! Two different clinicians look and say it's not that bad. I needed a full month to reach ONE DAY of clearance. ONE FUCKING DAY is all I got! The area felt better than it has in YEARS. I didn't even apply the steroids over the groin and that cleared up too (and came back in force, bright, angry red rash). I'm going to another doctor in March. I'm TERRIFIED I'm going to be told again that it doesn't matter and it looks fine and have someone look at me like I'm completely insane. I'm terrified that I'm stuck with this... I'm never getting this part of my life back. Another point for my immune system, another thing for it to take away, another way for it to strip me of any shred of dignity... as if I ever had that at all. I want to recoil, to hide... to never see another doctor ever again... but I need them to write me prescriptions... because for the thousandth fucking time "I can't keep living like this". I just fucking can't. I would rather fucking die but that's not going to happen so... I'm just stuck. It hurts so bad sometimes I just want to cry. I've had clinicians explain it as the worst yeast infection they've ever seen. I know I'm not the only one with this condition and it isn't even that rare (1/300), but I feel totally and utterly alone with this. No one around me understands. No one wants to talk about someone's genitals (understandably so). I know I'll just keep moving forward but goddamn I don't know how to except through the general monotony of the day... floating around not even really here half the time because I'm just dissociating from my body to cope. It's not fake. I'm not making it up. I'm not lying. They might think I'm crazy... and fuck I wish that's all it were... I really, really fucking do.

That's really rough, and I can understand where you're coming from. I guess that's why mine comes from the angle it does, which is generally not trusting my doctors to do their jobs effectively and suffering needlessly while they twiddle their thumbs. I have some great docs now, so you'd think I'd get over that... but my brain, I guess more than my body, remembers strongly the misdiagnosises that led to a lot of suffering as well as having practitioners that didn't listen to me and prescribed drugs that landed me in the ER (mostly that's psych meds but my brain apparently doesn't differentiate those things). Can you discuss these concerns with your doc? They probably have a lot more info from other patients and the likes that... while we could get some of that, I'm not sure going down the rabbit hole about it is ideal and might just fuel the anxiety.

The only way to really move forward is have a doc look at it and tell you what they think, impo. I do worry sometimes that this is like... a seeking reassurance compulsion, but I think sitting around and obsessing is legitimately worse. Try to trust your doctor, and maybe in the meantime distract yourself. Something like Seb K they can probably DX with a look, and I'll bet you're right since you already have some. Wishing you the best.

I NEED to learn to trust my doctors. I NEED to just leave well enough alone and be like a NORMAL person who isn't putting HLA-DQ7 into a Google search. I'm not a doctor, and OBVIOUSLY even if it IS something destructive and progressive I'M NEVER GONNA KNOW. It's almost enlightening that way. And IDK, have any of you ever figured out some self-talk for this? That's usually what I do about other obsessions with my OCD... find the right words to calm myself down and just... sit with it. And I need strategies, everybody. Cus I'm sick of my brain doing this. Any thoughts or advise on keeping my brain in line?

I got Moderna which is the same technology as Pfizer (MRA) and I have absolutely no concerns about the vaccine honestly. My rheumatologist offered me a booster before they were even approved (idek if they've started roll-out for Moderna yet), so I likely got a full dose for my 3rd (my guess is they had an open vial and wanted to get it in arms before it expired). It wasn't any worse than the first two. I'd say the first was the worst, but some of that may be that I picked up some tricks along the way. I had a fair amount of swelling with each shot and icing it the day of and day after helped A LOT with that, along with doing circles with my arms to get the blood flowing. The only other side effect I had was nausea - I chalked that up to nerves because it was worst with the first shot, but I guess that's a known side-effect these days. All-in-all though... getting COVID would likely be worse than anything the vaccines can dish out, so I feel pretty confident at this point that the booster was the right choice and that I'm likely pretty protected now.

I hope so. I honestly have no idea. Thank you for your concern though.

I'm having second thoughts. Ignore me.