Lichen Sclerosus and bathroom issues! What's going on?

[@sherrymcnew4753]

This is so informative. I was diagnosed only 6 years ago but have had since a young girl. No one ever mentioned any of this. I've been sent to urologists, and gastro, and internal specialists with no reason as to my symptoms (constipation, Urinary urgency, leaking, excessive sweating)

[@avahoffer341]

Excellent! Highly informative, providing information not found elsewhere - and I've been looking for quite a while! Thanks!

[@lichensclerosussupportnetwork]

Thank you! Glad you enjoyed it!

[@donnahill758]

@@lichensclerosussupportnetwork ordered the silk panties thanks 👍🏻

[@kathyjarvis1745]

Friendly idea In lieu of squatty potty buy foam yoga bricks $12 for two In color to compliment bathroom decor Subtle , easy to utilize I bought black to match tiling accents😊

[@lichensclerosussupportnetwork]

Great idea!

[@gidgetkyer4854]

I as a 51yr. Old woman and have several autoimmune diseases and LS was added to my list 3 yrs. Ago. I had over active bladder prior to LS diagnosis which I was told was from my medications. What I have been dealing with for the last 6 months is bladder leakage. I do the exercises that is suppose to help strengthen your muscles but it hasn't helped.

[@lichensclerosussupportnetwork]

Sorry you're dealing with this. It may be necessary to see a urologist. It may not be a pelvic floor issue. Good luck. 🥰🤗🥰🤗

[@joannc147]

Great presentation, thank you. I don’t have LS, however, my recovery from successful vaginal cancer radiation therapy is difficult. My urologist and radiologist do not seem to understand these pelvic pains I’m having. Just tried coconut oil last night! What an amazing difference for all this wretched itchiness ❤ Your info is very clear and yup - it’s all connected!

[@lichensclerosussupportnetwork]

Thank you! We're glad the information has been helpful. Have you tried working with a pelvic health physical therapist? There are many things that can cause pelvic pain. An expert may be able to get you pain free. Good luck. 🥰🤗

[@joannc147]

@@lichensclerosussupportnetwork Thank you for your advice. Coconut oil ended up causing a horrible topical irritation for me. Now using some Aquafor for topical and requesting hormonal cream for vaginal dryness. Not quite ready for that next phase with an expert yet!

[@salSwe]

My gyno told me to use vaseline. Works great for me.

[@cyndismart9113]

Good info thank you.

[@lichensclerosussupportnetwork]

You're welcome!

[@peggys9219]

Can LS cause all over body itchy😊

[@lichensclerosussupportnetwork]

No. It's very localized. Skin fungus can. I would encourage you to see a dermatologist or possibly an allergist.

[@phyllismorris94]

I have been diagnosed with Lichen Schlosus only a year ago, although I have had it since I was young.😮 (I am a 70 + year old woman. Recently I found out an aunt also had LS. I also have bathroom issues & irritable bowel syndrome. I had been planning to have a catscan of the pelvic area in Dec of 2023. I'm putting it off for financial reasons - the co-pay is expensive. Now, that I know all these issues are caused by LS, can I skip the catscan expense?

[@lichensclerosussupportnetwork]

Hey Phyllis! I'm sorry you went so long without being properly diagnosed. I hope you have found the treatment that works for you. I wouldn't say these issues are caused by LS, but they could be by-products of having LS. It's important to get evaluated, find the cause for your issues, and treat them accordingly. Hopefully, you can find a PHPT who can assess you and let you know if they find any pelvic dysfunction. We have tips for finding a PHPT on our website at lssupportnetwork.org/pelvic-floor-physical-therapy-for-those-with-lichen-sclerosus/. You can also join our mailing list and download a list of questions to ask a potential PT. Hope this was helpful.

[@beahaven1642]

What can be done for spasms in the vaginal area

[@lichensclerosussupportnetwork]

Unfortunately I don't know as LS doesn't affect the vaginal area. I would get evaluated by a pelvic health PT and find out why I was spasming. I hope you get answers soon. 🥰🤗

[@beahaven1642]

I have some Watkins burn cream, can i use that for the worst of the burning areas ? It contains lidocaine

[@lichensclerosussupportnetwork]

I'm not sure. I think it depends on what other ingredients it has in it. I would talk to a pharmacist about this.

[@John-z3x5p]

I'd prefer to not ever go to the bathroom while it's active. It's NOT a pleasant experience

[@lichensclerosussupportnetwork]

Completely understand. Have you tried barriers creams and a perri bottle?

[@donnahill758]

Where to you get real silk underwear? Victoria’s Secrets no longer sells 100% silk and the crotch is lined with cotton. I have ordered some from China that was very expensive.

[@lichensclerosussupportnetwork]

They are definitely expensive. Here's a link that was shared with me. www.realsilklife.com/products/classic-100-silk-panties-5-pack?spm=..collection_265a72b3-11fd-46d2-aa6a-75857a9003f9.collection_detail_1.2&spm_prev=..index.header_1.1

[@crystalknight8968]

fight or flight

[@JS-zp9jk]

Ive been having such a difficult time with this!! It has taken over my life, everything revolves around it. The restroom issues are excruciating. The incontinence is also terrible bc it burns with leakage.

[@lichensclerosussupportnetwork]

Are you being monitored and treated by a good provider? If not here's our directory. lssupportnetwork.org/providers LS can be managed and you should not be living in pain.

[@rachellewise390]

I'm in the same boat :(