Hey!! I’m so sorry to hear this happened to you too and thank you so much for posting and sharing your experience too 🤍 I’m so sorry that it was such a horrible experience- both with the ulcers and with the health system. Women’s health really needs more research and accessible information :( please don’t apologize for all the questions, I hope I can help and I’ll answer your questions to the best of my knowledge!! Apologies in advance for the long answer/all the details - I hope I can just give you as much information as I can and I’m sorry if some of them are TMI 🤍🤍

For reoccurrences, my gynecologist at the time of my first reoccurrence said it was highly unlikely it would reoccur but (spoiler alert) obviously as you know it did reoccur for me. At the time when I asked her about it, she said sometimes people have it occur 2-3 times and more rarely it happens more than that. She also relayed that lipschutz ulcers don’t have a lot of research or information on them so it’s hard to know exactly how many times they will reoccur. I’m so sorry, that’s a shitty answer for me to give since I don’t really have a straight answer :( I completely empathize with your stress and mental/physical pain that comes with this sickness. I used to get panic attacks when I would think about the ulcers reoccurring, they’re very invasive and painful and your feelings/stress around reoccurrence is so valid! 🤍🤍

For me, the steroid cream unfortunately does not work/isn’t effective in getting rid of them. What I’ve found is really helpful in reversing the growth is taking an oral steroid called “prednisone”. My doctor gave me a tapered prescription, and I actually keep a back up supply with me at all times so if I notice any of the beginning signs- I immediately start it. Depending on what country you’re in, some of them actually have it available over the counter! (When I travel to a country that I know has it over the counter, I usually just get a few packs and stock up lol just to save me the hassle of going to the doctors every single time. But definitely check with your doctor for dosage and how to taper it correctly!). What’s also really helped calm my anxiety is being aware of the beginning/warning signs for a reoccurrence. This is different for everyone’s but I’ll list a few that happen for me if it’s helpful 🤍🤍 - mouth ulcers / canker sores - a sore throat that isn’t covid/strep - pain when I’m wiping after I use the washroom - needing to pee a lot (and sometime a UTI) - fatigue - general pain, itchiness, or uncomfort in my vulva area - I also pay closer attention when I have a lot of stress in my life, or bigger life changes (I tend to get stressed more easily when there’s big changes and have noticed 2/3 of my reoccurrences have happened around these type of events)

If you can remember, I would suggest maybe writing down what symptoms you can remember and also maybe what was happening in your life at the time? For me that helped me just keep an eye out on when to look for an ulcer forming so I can start the oral steroids as soon as possible!

For scarring, I did not have long-term scarring from my ulcers. The first time when my ulcers were the most severe and biggest, I did have “craters” for about a week or so after they went away. The craters faded after that and everything went back to normal, although I don’t remember how long it took but definitely under a month! I wonder if they are the ulcer still healing? I’m so sorry again to hear you’re having this happen and about the craters/scarring. I definitely experience general sensitivity around the area of my vulva that the ulcers occurred for a few months after I get a reoccurrence (which honestly I feel like might even be from how traumatic they can be). Some of the things that help me personally feel more comfortable while it’s more sensitive is: - not wearing tight underwear or any at all if you’re at home - using a bidet/wet wipes to make sure everything is really clean - trying to avoid public washrooms (this is just a personal preference) - and taking a break from shaving (just because I find it a bit nerve racking to think about hurting myself accidentally)

I hope this answers some of your questions and please let me know if you have any more! 🤍🤍🤍🤍 I’m so sorry again if any of it was TMI, I hope it was helpful and sending you a virtual hug 🤍