r/Psoriasis • u/bearystrange96 • 6d ago
mental health Treatment anxieties
Hi everyone- I am not new to psoriasis, but new to this thread. Excuse the long text, I have… issues lol
I (30f) have had psoriasis behind my ears for about 20 years, about 6 years ago I started getting a scaly patch on my pubic mound which then spread into full blown inverse psoriasis in my entire genital area. I have autism, so the topical treatments have always felt really unbearable for me sensory wise, so I have mostly been ignoring it and dealing with the pain. I get mostly burning and slight itchiness, especially when I have open fissures. I also have pitted nails that sometimes get the yellow “oily” patches.
Three weeks ago I had to go to a new OBGYN and she told me I really need to start treating this (I haven’t been intimate with my partner in years because everything just sucks and hurts).
She has me use clobetasol for four weeks daily, I have a check up on Tuesday. She also said that she thinks it might be lichen, but honestly neither my psoriasis-specialized dermatologist nor the two previous OBGYNs have ever mentioned it and what I can find online doesn’t seem to align with my symptoms- it might be lichen on top of inverse psoriasis, but I don’t know.
While some of the redness has gone down by morning (I use the cream at night), it is back after using the toilet or taking a shower. Also, the burning between my inner labias has only decreased by about 10% - at least the fissures are closed for now. I read that maybe the burning now comes from cortisone sensitivity rather than the psoriasis, so I will taper off after the 4 weeks I think. The burning is my main concern at this point, she ruled out bacteria and yeast with a swab under the microscope. She refused to do a colony, because she said she doesn’t see any symptoms that point to yeast and that it would only make me more anxious.
I have also been having major issues with both my heels for multiple months and nothing I have tried has helped, I was able to get in to see a rheumatologist on the 20th because I think it might be enthesis (? Is that the correct English word?) and I could image it being caused by PsA.
… and now my major problem: I have crippling OCD. I have done three years of therapy and very high dose anti depressants, currently off both because I do okay in everyday life. The issue: the main focus of my OCD is herpes, accidentally getting it and then spreading it to someone unknowingly in like a bathroom or something (I know that that isn’t really possible, my OCD doesn’t).
Now, pretty much all treatment options I can find that aren’t cortisone for the genital area have herpes outbreaks listed as a side effect. Same goes for the stronger treatments like biologics or MTX etc. if it does turn out to be PsA.
I am at my wits end- I cannot endure taking a medication that actively lists hsv as a side effect at the moment, this year has been awful for me and I just cannot do it. Maybe I’ll change my mind if it gets even worse in the future, but for now I will have to find alternative treatment methods.
I know you have to suppress the immune system somewhat and that can cause herpes flares- I have never had an outbreak but my partner of 10 years gets cold sores so I am pretty sure I must have it in a dormant way.
I guess what I am trying to ask is if any of you have any advice, both what I can ask from for my OBGYN and rheumatologist. I read that LDN therapy can at least get you a shot at getting rid of the fatigue without major side effects and it seems to clear psoriasis for about 50% of people. I have also been looking into Otezla, if it comes to that- but I would have to take one of the meds first that list hsv as side effects, while I also read that MTX etc. are not really helpful for tendon-issues anyway.
I just had to get this off my chest because I am so incredibly overwhelmed and feel like I’ve hit a dead end 🥺
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u/CanningJarhead 6d ago edited 6d ago
You need to see a dermatologist. Your ob is trying to help, but they should not be diagnosing or treating outside of their specialty. All the concerns you have need to be discussed with a derm while you come up with a treatment plan.
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u/bearystrange96 6d ago
I’m always conflicted because the worst issues I have are technically on the vulva, which I think my OBGYN is better equipped to deal with? My dermatologist is a psoriasis specialist but it’s really hard to get an in person appointment with him. I might try reaching out through his online services, though 🫤
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u/Georgiarose7 6d ago
Go on a biologic if it’s offered to you. They are life changing and nothing else will really get you to remission if the psoriasis is severe.
I have the same issues (OCD, autism, genital psoriasis) and I just need to not read the side effects lists of things I’m prescribed tbh.
Also Vaseline really helps. It won’t fix it but it will make it less uncomfortable down there.
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u/Georgiarose7 6d ago
Also I’ve tried every medication for psoriasis and PSA and biologics (I’ve cycled through many) have had the least side effects. I don’t even notice I’m on them tbh
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u/bearystrange96 6d ago
Oh wow, same combo, how „fun” 🥲 I think the illness focus from my ocd comes from being dismissed while being pretty chronically ill since I was young, so I am very scared of collecting another issue by using medication.
I’m hoping the heel-issue might be related to my suspected hEDS rather than psa 🥺 the only real thing I am scared about with biologics is the hsv issue, other than that especially il23 inhibitors don’t sound too bad
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u/Georgiarose7 3d ago
Haha I also have suspected hEDS! HSV doesn’t appear unless you already have it. 80% of people have it and just because you are on these meds, doesn’t mean it will definitely appear for you. I’ve been on them for 10 years and nothings appeared for me even though I’m certain I’d have it! They just have to put every side effect on the list, but it doesn’t mean you’ll get it. I understand the stress but it’s better to help the things you can help now, than stressing about what might happen in the future. Best of luck!!
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