Why is it Invisible

[Zazz 20]

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.

[MARC 429]

I would see a dermatologist as they are tbe experts in skin issues and would know what are your best options. When I had a skin infection and basal cell carcinoma, that is who I saw. Studies have shown that is who should diagnose skin issues. 

[Zazz 20]

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*

[MARC 429]

Any health issues are not fun and I have had some persistent ones myself and it can be very stressful at times. 

[Zazz 20]

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.

[Zazz 20]

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.

[MARC 429]

It is always best to have a new job first before you quit. I don't know what your job is but I would take some time off first and think things over. You said you aren't taking your medicine which you need to function. Don't make any rash decisions you may be sorry for later. 

[PennyPanic 276]

Zazz, 
I found this interesting and hopeful regarding antibiotics and LS. https://pubmed.ncbi.nlm.nih.gov/16961523/ Consider discussing it with your doctor to see if it can get rid of it once and for all. See what they say and/or perhaps seek treatment at a university medical center near you. They tend to be much better.

I have an unrelated condition that I ended up flying to Harvard to get seen because the local docs were nice but useless. Long story short, the doctor in Harvard ended up consulting with my local doc and my local doc learned a thing or two and started other patients on the same protocol when he saw my results.

Hang in there. Please keep us posted.


 

 

[Zazz 20]

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*

[PennyPanic 276]

Zazz, I was diagnosed with Rheumatoid Arthritis 32 years ago...long story short, after almost 20 years of conventional meds, I came across some pieces of info where there was a doctor who way back when started treating patients with rheumatic diseases with tetracycline (doxycycline and minocycline weren't invented yet). Long story short, there are some docs at the University research level treating patients with minocycline now as well as other docs who study it as well. I've been on minocycline for I guess about 15 years and "technically" in remission. I have never encountered a tick either. A few years ago I suspected LS and researched and found the article I sent you. My symptoms went away never to return (I hope) - I didn't do anything, it was spontaneous. What I'm getting at is everything isn't necessarily lime or tick related...but it could be rheumatic related (scleroderma and DM are rheumatic diseases). You may want to check out www.roadback.org That's where I found my info on minocycline back in the day. I'm not saying you have a rheumatic disease at all. I'm just sharing resources that might be useful if you need them one day and also to give you hope that if it were some kind of autoimmune involvement that there are answers and people doing incredibly well. Of course the whole scenario and fight completely f'ed up my brain with HA...but hey, that's another story right? LOL. 

[Zazz 20]

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. 🙃

[PennyPanic 276]

I'm so sorry your dealing with all of this. The Road Back Foundation https://www.roadback.org may give you some answers. 

Meanwhile, I totally get your confusion and frustration with the non-definitive answers. I think medicine is sometimes more "art than science" than what we realize isn't it? and that makes it so difficult to grab a hold of anything. I get it totally.

[PennyPanic 276]

Another thought for you Zazz...and I know this sounds so basic...but have tried switching soaps. I can't use any of those sensitive skin soaps. I have to use soaps with nearly nothing in it. I use Beekman Goats Milk soap, their fragrance free. Just a thought.

[MARC 429]

Real health issues can be tough to deal with and I have had and have a number of them. I try not to think about or dwell on them but it can be difficult at times especially when symptoms arise.