I have read little snippets in previous comments or posts about vulvovaginal ulcers… I have a couple really painful ones down there (I took pictures for my own reference and for my doctor if I don’t get in soon enough… But I’ll spare you!) My first panicked thought, being single and more sexually active than I probably should be, was omg is that herpes?! Hence the pictures and hours of googling far more disturbing images of other people’s privates. Luckily I’m a bio/medicine nerd and can tolerate it as well as enjoy learning more. The trick is to focus on the region of affected skin rather than the overall image or concept… But all that said it’s still hard not to feel like, ugh, gross! And could that be me!? This same concern has happened to me before, but I’ve never been found positive for any STI (as they now call them)… That is except the high-risk HPV causing my recent abnormal pap. So, basically I’m concerned for my health and also trying not to freak out that potentially adding this sort of stigmatized illness would really slim down my chances of progressing from single to settled!
The good news so far is that the ulcers look exACTly like the canker sores I get in my mouth (those pesky or downright miserable but non-contagious ulcers many of us know and don’t love!) Round, flat, whiteish/yellowish and red-rimmed, appeared directly as an ulcer rather than a blister… All things that make them match the description for the “aphthous ulcers” most commonly found in the mouth. There was very little info about them, but based on browsing the herpes photos and clinical descriptions, it doesn’t match up well with that. It feels just like my oral ulcers too… Really sensitive and painful when disturbed, but otherwise not noticeable. I found a few (but not many) references that this same kind of ulcer can occur vulvovaginally, some of which were associated with lupus as well, and I swear I’ve heard of it on LWL before…
Obviously I’ll have to get in to the doctor, but I’m preparing already for the fact that she might not have ever heard of this type of ulcer ending up in this uncommon location. My current primary, who quickly funneled me into diagnosis when I started seeing her almost 2 years ago, is the type to either know things or look into them, plus is very thorough in follow-up. She’s actually more anxiously vigilant (in a good way!) about my health maintenance than I am myself! Which is sayin’ somethin’! But I’m still wondering what people from here have experienced regarding similar strange and sensitive concerns! (And of course I’ll be looking for support here if it does turn out to be from an STI…)
Oh, and one more note about my post… I can feel a few mouth ulcers starting up too, even though they aren’t showing yet, and I’ve had bad joints the last week or so.This little flare started up when I was back home in Seattle for the holidays running around trying to see everyone, missed a steroid dose one day. Most symptoms I get these days are brought on either by my own negligence (ie running around with friends during my vacation as if I’m a normal 26-yr-old, missing meds, falling off my usual healthy eating pattern, failing to maintain a decent sleep schedule, such as now!) or pressuring circumstances (ie needing to work more than I can handle… Such as tomorrow unless I REALLY can’t deal.) My lupus is active but more-or-less under control with good quality of life, yet still some bummers, and of course ongoing concern for disaster! But nothing like the anguish of 2012 and the wretched uncertainty of 2013…
Despite yet another bump in the road, 2014 is still looking up compared to the other two years, in large part because I know how to roll with the punches better now! Did I mention I’m being treated for a UTI right now too? And having an IBS flare? (I think my “IBS” is part and parcel of my lupus though, a name for that secondary symptom group.) When it rains it pours, but I’m ready to keep dancing in the rain in 2014!
Thanks for posting this.... I experience something like this, only it is not like a cancor sore, it is hard and painful like a boil and it takes forever to heal and it scars. Its embarrassing, but I've never had this before the lupus. Please let us know what you find out....
I’ve had things like boils that basically are… Infected hair follicles that merge into one thing of inflamed pus! They hurt for me (just like larger acne do for me) and normally happen in the bikini line where I shave or sometimes wax and that the elastic from panties rubs in. I’ve never dared shave/wax what goes under the underwear… Aside from the pain and upkeep, I KNOW my temperamental skin would flip out! It’s interesting being one of VERY few young urban women (aside from hippies) that doesn’t shave completely or get the Brazilian wax. But I feel comfortable with my body in a mostly natural state, my health and comfort is more important than appearances or fitting social norms, and nobody I’ve been with has really complained (except the boyfriend I was with the longest, go figure… He was a jerk all around though. I’m sure I’ve ranted here about him and his 4 yrs of damage to me…)
So, about the ulcers. They got worse by last night and I went to a walk-in clinic today. The PA there (who was very calm, sweet, professional and knowledgeable, really appreciated finding that at a walk-in clinic!) said it looks just like a typical herpes outbreak. I’m going into planned parenthood on Monday where they have the kits to culture it and confirm and check about HSV-1 (milder, typically the cold sores one but now often genital as well) or HSV-2 (more virulent, the typical “genital herpes”) Then I have to go Tues to the doc at my univ. clinic who diagnosed the UTI to see if it’s really that or was just part of the initial outbreak symptoms. I’m starting antivirals today, and of course it would be important to discontinue the antibiotics if the urine culture came back negative… In either case, the immune suppression means I have to again have more meds and more worries.
Ouch. Even though I was worrying already for 2 days, it’s still gonna take me a bit to process it. And unlike the lupus, it’s pretty much totally my fault due to promiscuity. Since condoms don’t necessarily block it, the best practice is monogamy following testing in proper time-windows. I really haven’t followed that at all in the last few years, nor was my use of condoms very reliable. It’s extra ironic, since I had decided to steer clear of sex (and even minimize dating or emotional entanglement) for this first year back in the game of work and school while my lupus is still getting reigned in closer to remission. I knew how much MORE careful I should be now that I’m immunosuppressed… But then didn’t do it. New Year’s resolution time… And this time it might work, for the twisted reason that I’ll be more diligent about protecting a partner’s health than my own (wtf is up with that!!! but it’s common to a lot of us that we’re the drained other-focused caregiver types even while we’re sick!)
I’m really glad I have a safe and supportive place to spill about these extremely personal and stigmatizing things… So important to have support, or even just the space to confess it all to process “out loud” (I grew up catholic but I’m not any more… Now more Eastern-leaning and of course this fits just as well with karma as with smiting…) So I guess I might wanna join an HSV site, though it won’t be in the Ben’s a Friends network… HSV affects ONE in FIVE women (less men, since they have more tools and behaviors to spread it and less of biological environment to suffer from it… Don’t even get me started on the sexist way promiscuous men are admired while female promiscuity, even to lesser extent than many men, is reviled and humiliated! That right there may be a cornerstone for me to avoid self-destructive shame.) To keep it in perspective without adding layers of guilt and/or blame, or “holding on” (something a meditation leader taught me about the meaning of “letting go” in Buddhist practice, which totally lightened the burden of my family issues’ role in my suffering…): These things happen if you take the risks. With a 1/5 prevalence (vs. lupus’s approx 5/1000, for example…), I’m pretty lucky I didn’t already get it a while ago, like when my ass-hole long-term ex was cheating on me promiscuously and carelessly (>12 women, many without protection!) It’s as simple as that… If you roll the dice, you might lose… And since I did, I have to be strong. LWL is definitely the best place to talk to those that are! Other sites about chronic STIs might be negative complaint sessions, whereas I know I can be fully disclosed, share how I take responsibility for my newest condition, receive non-judgmental support, and most of all take inspiration from the incredible perspectives shared by the members here!
LOVE YOU ALL, and for those of you who pray, please keep me in yours. I might take up some prayer myself, even though I haven’t in a decade. And I’ll definitely set a strong resolution this year, not just to abstain till in a fully understanding and trustworthy relationship (which I hope I can find…), but also to be careful for myself and not just for others, and more generally to put my health ahead of temptations (whether that’s simply shorting myself on sleep or healthy eating or engaging in risky behaviors, I need to hit the reset button.) Please take advantage of my wake-up call, especially the younger, newer patients who struggle with the identity conflict of “can I play around like someone in their 20s or do I have to be responsible far beyond my years and careful like a frail old woman…” Take care and be well everyone.
Brynn (it’s significant to me to not write anonymously if I’m going to accept this as my reality… Since this is one place I can share safely…)
Talked to my rheumatologist about the new chronic issue… He’s not worrying about it being a big problem with my lupus treatment, but I’m suspecting it’ll be worse for me than for non-suppressed people! Though on the flip-side, the anti-inflammatory nature of our treatment might make episodes LESS severe/painful if the outbreak is itself more of an inflammatory overreaction… Who knows. Rheumy says “time will tell”, and there’s not much way to know whether it will be better or worse than if I didn’t have lupus or lupus meds on board… Well, I guess that should be kinda obvious to me because I’ll have it however I have it without anything to compare against in some non-lupus or non-treated version of myself! Just what I need, another unpredictable, incurable yet “manageable” chronic illness… This one highly stigmatized.
I want to try really hard not to dwell in negative expectations, but I think acknowledging my prime fears/frustrations here might be helpful… Not least to say it and the address those feelings in any counseling, meditation and self-reminding I do. I know letting these thoughts take over my experience won’t do anything to help the illnesses (and would likely make them both worse, by holding onto stress…) But here they are:
- Am I at risk/higher risk for the high-morbitidy and mortality HSV encephalitis? Will Rituxan and/or steroids increase this risk? I already have accepted the Rituxan risks for PML, which has a similar course and symptomology… But both are rare, and uncontrolled NPSLE is essentially the slow and steady route toward similar outcomes. And with the current antivirals, it has a standard treatment protocol (unlike PML, which I don’t think does…) I should get an ID bracelet if I’m really that worried…
Bottom line: treating the known devil was already my priority over fear of a rare but severe complications, so treat both known devils in pursuit of success, without being stressed by what-ifs.
- Will this chronic viral illness make my lupus worse? See above, and this is even more straightforward since the obvious thing to do is keep it under control and keep attending to my lupus treatment. In this case, it’s sorta possible to see effects, since I know my current state of lupus control, plus my previous states of higher activity. However since lupus is so variable in and of itself, with so many other triggers, it would be pretty impossible to tell! Even if timing syncs up, a lot of lupus triggers are also outbreak triggers, so if anything it’ll make me more diligent to avoid them!
Bottom line: do what I can to avoid triggers, treat promptly (or suppress continuously), keep calm and carry on…
- (one that’s MUCH harder to shake…) With one more disease, this one less debilitating but transmissible and highly stigmatized, am I ever going to have a chance with relationships? Or now even casual dating? Now “the talk” is two-fold and has one that’s perceived to be my fault (including by me!) and that nobody wants to be exposed to.
Bottom line: this is what I got and I can share and deal with it responsibly and perhaps impress someone by that, and at least have the knowledge that someone really cares to be with me despite the risk. The funny thing is, people should be more concerned about the bigger deal of being exposed to caregiver syndrome rather than a recurrent uncomfortable skin pathology…
- Will I let the above stresses take over my life and limit my achievement of the best one possible?
Bottom line: heck no! This list is meant to remind me how feeling these fears is ok, but keeping them in perspective is essential. Here I go…
Hang in there. We seem to have a hard time fighting germs of all sorts. Hopefully you will find proper treatment.
And get settled I as as sure. There are some understanding men out there. I snagged one after being diagnosed.
Oh a viral germs. We all catch them, but yes we seem to have them more due to lupus. Maybe nust not fighting it well. Or not getting rig of it well. I go from coldto infection constantly. Sucks!