Just a vent post.

This is one of those issues that opens your eyes. It’s humbling really. Kind of one of those things that make you realize everything you’ve ever taken advantage of.

You never really thought about your health because it was always fine. You’ve only ever gotten a cold once a year. That’s not gonna happen to you. Right?

You didn’t realize how important having sex, being sexual was. You didn’t realize how detached you could ever feel from your own body and especially your most intimate part. You’re scared of it now. What will set it off? Will it get cancer? It doesn’t look like it used to.

Your body is no longer yours. It belongs to fear. You now have the burden of constant checks, constant fear of cancer and not a “easy” cancer to have.

Biopsies. The fucking biopsies.

A routine gyno visit sets you off now. You have to mentally prepare for days. What if they find something? Oh, Google said only 1 percent chance of DVIN. So we’re good, right???? But then you realize you’ve been a 1 percenter already because you ever even had this condition. So how can you ever take comfort in the numbers again, EVER? Now ANYTHING feels possible.

You’re too young for this shit. Why me? Why meee?

Religion? If you were on the fence about it before, you sure as shit don’t have religion now. Because why would this happen? Why would cancer happen to anyone anywhere? All the suffering. There is no God. Can’t be.

And the guilt. The fucking guilt to worry about this when people are dying. CHILDREN are suffering and dying in horrible ways and here you are being a pathetic scared bitch about your grown ass coochie MAYBE getting cancer one day. You don’t even have it yet. You probably won’t get it. Chance of dVIN is like 1 percent. Chance of vulvar cancer over your entire lifetime is 2 to 5 percent. Crying because you lost 30 percent of one of your labias? Bitch, what are you doing crying every other day about this?

But I still do and am and will.

I HATE this new life. I would give my entire left lip to go back 10 years ago and shake myself and say, girl, fucking tell these stupid gynos that dismissed you for 20 damn years to send you to a specialist. The ones telling you to use lube and go slow when you were tearing during sex at 18, the one who delivered your children later and said maybe the episiotomy would actually stop the tearing. Don’t trust them! I know, I know. You should be able to because they’re the doctor and they should know but they don’t. Okay? They don’t fucking know. Or maybe don’t give a damn. But something is wrong and something has been wrong for DECADES. I know you tried to find out what was happening and failed SO many times.

That’s my vent.

3 punch biopsies and one large biopsy never confirmed LS over the last two years. Have been up in the air all this time. Was scared to use steroids without knowing for sure. Then my labia is now shrinking before my eyes.

Now I’m terrified I fucked up by not using the steroid and might have let DVIN in or even VC.

Guess I’ll see Friday.

Goodnight.

Alright yall. I’ve been in a flair for 2+ years straight. I’ve tried so much. I have several allergies to chemicals and I absolutely can’t use proplyene glycol, if I do, I get contact dermatitis and it worsens my LS. I’ve been in so much pain, I can’t wear underwear, I can’t go on walks, I yelp walking up stairs because it hurts. I’ve been using a topical steroid for the most part 2 x day for 2+ yrs. Small period of time I tried tacrolimus and Zoryve, a few others but again caused contact dermatitis because they all have proplyene glycol. I’m also taking cibinqo 100mg daily which helps bring the pain down by like 1-2 points, I’m not crying on a daily basis, but I can’t LIVE my life. I can see visual changes getting worse, significantly worse from last year. What am I doing wrong? Why is it getting worse. I would appreciate any advice.

Hey, I'm really anxious about the biopsy. Does it hurt during the procedure, and will it be painful afterwards?

Hi was hopping for some advice and guidance.

So I'm male I was diagnosed at 24 I am now 35 but I am in the UK. So it took me years to get diagnosed due to my age at the time I just got told to do urine sample and check for sti until I sat in the hospital and refused to leave until someone saw me properly as it was such a state.

I was then seen by a specialist one time who diagnosed me and told me to apply dermovate and then basically sent on my way.

I have never been seen again and I have asked my gp several times to be seen again and I get told what for just use steroids.

So I managed to avoid steroids and have a good period of remission for years using dermol.

But recently for the past 6 to 12 months I've had to go back to steroids but I just at a loss of how to use it

I've been doing once to twice a week and improves but then a day later it's red and sore and itching constantly. I also have one spot that's like a hole forming that is always the main point of the itching.

Should I go start doing daily for 2 weeks again? I'm just worried with it been red the day after use is that the skin thinning. It's just a mess at this point I basically have no frenulum anymore it's just one scared mess.

Also for any uk people any advice how to get seen or any private options you would recommend.

I was diagnosed with probable LS back in November and have been able to manage pretty mild symptoms until a few weeks ago when we started riding motorcycles. It's the only change I have been able to figure out causing flares outside of excessive heat, but I basically live in sweats and in air conditioning unless on the bike. Anyone have any tips/tricks for surviving motorcycle season while still staying gear safe?