I'm Never Going Back

[Zazz 20]

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*

[Ironman 193]

I am reading a lot of stress.  With stress somes a lot of overthinking and worrying and hypervigilance.  

I wonder if the stress itself is causing some of these symptoms.

[Zazz 20]

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

[Ironman 193]

I don't know - I'm not a doctor.  I just know from my experience....and I had anxiety so bad, I was derealizing and freaking people out.  

Stress and anxiety can do some weird stuff to the body and mind.  

I don't think that's pretending, but if it's not cancerous, that doesn't mean something else isn't going on, too.  Trust your doctor.

[Zazz 20]

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*

[Ironman 193]

That would require a skin graft, wouldn't it?  

I had to look it up because I have never heard of it before.  There is no mention of cancer, but it does say stress can cause it and that cortisone cream can help.  

I have psoriasis occasionally.  Not much to do for it than duct taping the skin and removing the dead skin or coal tar, which can cause issues.

Darned if you do and darned if you don't.   

[Zazz 20]

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!

[Zazz 20]

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.

[Ironman 193]

I would think that doctors would love to have their patients educated on things.  It would make their lives easier.  The thing is, we can learn the wrong things.  

They would not only need to about a disease, but the body parts affected and hormones and all that stuff around it that is affected.   In that respect, you have to at least consider what is going on.

What you need is more consistent communication with a doctor - I would ask for more time and even give a list of questions if you have to.  The least you could get are answers. 

[Zazz 20]

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...)

[Ironman 193]

Lack of menstruation causing atrophy?!   Too many people reading too many things.

You kinda have to take things at face value.  

Have the doctors explain what they are seeing.  

HA is adding way too much into the picture.   They don't think you are lying, but they know you are overworried and don't exactly know what to do.    YOu have to tell doctors the truth, but you have to let them sort out what is going on.  You can't always expect an immediate diagnosis.  It took two tests and four medication trials before my doc determined I had Social Anxiety Disorder.   Doctors thought I was bipolar!   I was even put on lithium when I didn't need it - all it did make any OCD I ever thought I had....EXPLODE.  Checking doorknobs 10 times to make sure I locked it.  Not normal.

[Zazz 20]

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!).

[Ironman 193]

I'd look into cranberry juice for urinary stuff, too.  

It's hard to parse through the mental stuff.  I had a tramuatic church experience (NEVER go to a charismatic church) that left me with dissociation and severe anxiety.  It took six months to get the medication right, and I was on Geodon to put me to sleep because I would be up all night worrying about people shaming me.  Many people told me that it was all in my head....until it got an employee fired for harassment - and it occurred when I was trying to recover from the church experience...you don't kick somebdy when they're down.  That was years ago...

Long story short, things can improve if you go after things the right way.  Keep yourself hydrated up and down.  Moist skin doesn't paper cut as easily.  Even if you have to use Vaseline or something like that.  I have coal tar (smells terrible) for elbow and knee psoriasis, but it works despite saying it could cause cancer on the tube LOL!  

Keep in contact with your doctor - they need to know as much information as possible! 

 

[Zazz 20]

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.

[Zazz 20]

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!

[Ironman 193]

Well, you would still have to accept whatever the doctor tells you.  

[MARC 429]

Around 15 or so years ago I was getting pain in the center of my back and when I ate, I felt like my back was on fire. I had no indigestion. I went to my physician who thought it may be my gallbladder and I got an abdominal ultrasound, and all was normal. Things were not getting any better and I was sent to a GI physician who ordered an abdominal and pelvic MRI. All came back normal. Next test was an EGD, which uncovered an ulcer in the bottom part of my esophagus. My symptoms did not indicate an ulcer, but I had one. He put me on Nexium, and I had another EGD in 6 weeks and it had healed. To this day, I am still on Prilosec, and I still get phantom pain from the ulcer on my right side and still get bouts of nausea and they said to live with it and I have, even though it is not the best feeling one could have and gets pretty annoying at times. 

[Zazz 20]

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?).

[Ironman 193]

2 hours ago, Zazz said:

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.

I am saying that somewhere down the line, you'll have to come to some realization.  It may be chronic; it may be healed.  You need to find some peace in all of this.  

I would try the second doctor, but you will have other scenarios. What happens if the second doctor says the same as the first?  That could even be a possiblity.

[Zazz 20]

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.)