@fdixon63 Welcome to Mayo Clinic Connect! I’m so glad you found this support group! I see that you have posted your question in the Women’s Health Group. That is a great location as you will reach more women with your questions.
I’m so glad that you found the group and hope you will feel free offer thoughts.

use a pari bottle every time I urinate.

@fdixon63 Im still in the process of getting a doctor through my health insurance to actually do the biopsy so they can say i have LS and gibe me treatment for it. But I can say I've tried coconut oil, olive oil and for me there was absolutely NO relief just more irritation. I hoped to get diagnosed without the biopsy just cus I've heard so many horror stories about it. People losing full feeling in that area etc. But at this point I'm begging for it. It's been since I was 14-15 years old thaf I've suffered from this and I'm now 38 years old takkmg a photograph into the doctors office basically shoving my vagina in their face. Like see, you see that??? T hats my problem and I finally got a dr to listen after that. Im now waiting for my health insurance to find me an obstetrician to treat it because my health insurance doesn't cover dermatology and thats where every Dr kept sending me to knowing I couldn't pay for it. But im on HRT and ive tried placing estradiol on it and NOTHING. It seems like anytime I think I found something to give me some relief I'm wrong. I end up with another flare up. I NEVER thought I'd EVER go through something like this in my lifetime. And I pray that they find a cure for thsi disease. It ruins your everyday value of life, I can't wear clothes I used to just skirts and loose dresses now. Im having trouble with my relationship because my partner doesn't understand it. It also doesn't help that the 9 years we've been together I've gone to Dr to Dr being told its just a yeast infection or BV. So now that I've finally figured out the problem on my own its like he looks at me differently. He saw me taking photos of myself in the bathroom and I had no choice but to explain that they were for my doctor and then I had to show them to him. I was so embarrassed, I felt my heart fall right through my stomach watching the way he looked at the images up close and personal. It really is a horrible disease and I pray 🙏 everyday that we find a cure during my lifetime. Not even for me but other ppl who are suffer from LS. Like im that person waving my hand ✋️ like take me, I will be your guinea pig , or monkey or rat! Like I would do anything to help them to find a cure for this. If you wanna know what living in hell feels like? Well this is it! Constant burning. Pain, itching, more burning. Like thats the only way I can describe it. Good luck fellow LS friends. I will stay praying for us all.

@fdixon63 Hi, I have just seen your message and have had the same problem since my teenage years as well. Not sure if this will work for everyone but it has been helping me with reducing my extensive scarring and itch..firstly I seen a naturopath and she recommended a probiotic and sea moss to help remove the inflammation from inside the body. After trying a ton of creams and potions meant to heal it and reading all the forums I have found a cheap method of my own combo that is helping secondly..it is using candula cream, bio-oil and I know it sounds weird but a perianal spray (after labour spray) to remove the itch which has been a game changer for me. As I said, it is helping me but is just a possibility for others and can't guarantee the same will happen

@fdixon63 Hello. I’ve suffered with LS for over ten years. As you know, it has been a challenge to manage this condition due to the lack of information, and limited “treatment” options. Granted, I’ve not had surgery like you have, but I’ve tried all types of things to get relief, from diets to supplements to other topicals. Nothing worked. I even stopped going to my GYN because she had nothing besides Clob to offer me. I finally found a dermatologist who understands this condition, and has given me reasonable options through trial and error. She has been a Godsend, to say the least! I’m still on Clob for flareups, but even the amount of the steroid put on the area can affect the angry skin, and even make it worse (I did not know this). She recommended a lentil-sized amount for me. In addition, she recommended no soap, just water for cleansing. Her words, “the vagina is self-cleaning.” A hand-held shower head has been helpful for this. Since I’m postmenopausal, she recommended Vaseline for moisture. I agree with the topical Estrogen - it has not worked for me either. However, the amount of Clob used, washing with only water and no soap, and use of Vaseline have provided me relief for my LS. Take care!