Newly diagnosed at 33 and looking to make small support group
Posted , 18 users are following.
Hi all,
I'm a 33yr old woman recently diagnosed with Lichen Sclerosis and feeling pretty annoyed about it.
I've been using Dermovate for a month or so - symptoms def improved but white patches have grown and sex life with bf has all but disappeared.
Are there any others (possibly newly diagnosed) who might want to start a small private support group to document our individual journeys and trials? I'm thinking of trying some dietary changes in the NY etc.
Thanks for reading. Would be great to hear your stories and try to make the most of a scary diagnosis.
0 likes, 24 replies
TheSpaceDust lily24227
Posted
Hi how are you doing now? I know this was posted 8 weeks ago are you still using clob? Any changes to white patches? I was recently told i have ls but ive had this for about 8 yrs, im a guy in my mid 20s now and am also super frightened about what the future holds i hope the white thick skin goes away with the clob ive been using for just under 2 weeks.
claire30173 lily24227
Posted
Hi
I'm 29 years old and have had this for 2.5 years.
When i was diagnosed it was pretty bad but after 6 months of steroid cream use things began to look normal down there, no white patches or sores. Its taken be probably 1.5 years to get my head around no baths, no shower gels, certain types of under wear etc.. i would tempt faith and then get a flare up. I've been pretty strict now and its been ok.. still get the odd cut but one dose of steroid cream does the job.
With regards to sex I totally get it. I use tons of coconut oil (for vulva not vagina) and i mean TONS. This is because the friction in sex can lead to tears at least for me. It doesn't always work and I have to put steroid cream on straight after when I know I've torn. Still this has allowed me to have sex 3/4 times a week (spread out, e.g not the night and then the next morning) which is ok.. I just hate having to think about oil and things beforehand and steroid cream after, I wish at 29 it wasn't like that!
I've got a referral to a consultant gynae, perhaps thats worth a go? I feel at the very least they will be very familiar with LS and patient experiences. Also looking into stem cell therapy too and think when I have saved a bit I'll be giving it a go.
maiya70071 claire30173
Posted
Hi Claire,
With the tears after sex that you have mentioned, where abouts do you get the tears? As I seem to get tears on my perineum afterwards and its not exactly painful until after a while. Also what were your first symptoms? I am still unsure if I have it or not but the only symptoms Ive been getting are perineum paper like cuts after sex or passing bowel movements.
Thanks!
claire30173 maiya70071
Posted
Hi Maiya,
read my latest post - i just found out the other day after over 3 years ive been misdiagnosed with LS. im really shocked.. it looks to be dermatitis or exzema.
sophie50878 lily24227
Edited
Hello, I'm 25 and recently diagnosed with LS. I would be interested in a support group! Feeling slightly alienated at the moment with not knowing anybody else with this condition!
eggbiscuit sophie50878
Edited
Me too, a support group is a good idea to compare notes
j89027 lily24227
Posted
Hello,
I'm 30 and I was diagnosed with this at 20 with a lucky shot at having a very early diagnosis. Although things have never quite been the same for me, I have to say I have had a lot of success in keeping things pretty much normal down there in the past decade. Perhaps that will give you some hope.
Recently I have been experiencing a really bad flare up and have sadly had to deal with some structural changes to my clitoral area where I can no longer retract the skin at all so I have lost a lot of sensitivity. In hindsight I can see that if I had stuck to my maintenance regime more strictly I might have been able to avoid it. But I'm trying not to think about the past too much and just focus on the future.
I am lucky enough to not have a huge amount of issues around my vaginal opening, it is mostly just my clitoral area and labia, so I don't use any emollients or coconut oil etc. I find this really irritates my skin as I am generally sensitive so whenever I try it it seems like it is burning me.
I recently had success at asking my GP for a referal to a specialist doctor in Female Gynaecology. I would reccommend creating a relationship with a specialist as early as you can. For years I have been tossed around , usually referred to dermatologists who all feel skittish about even physically examining your genitals. I've also moved to three countries since I had it diagnosed which didn't really help. I have an upcoming appointment in about a month with this specialist and I'm going to be asking her for a complete overhaul of my treatment plan, hopefully a surgery to correct the skin merging over my clitoris, and also I will ask her about the stem cell treatment options. She runs a stem cell private clinic in London so I am hoping she will have all the answers!
Happy to provide support if you have other questions about my experience.
Nanijill j89027
Posted
Help !!! Going on ten years .. nothing is helping !!!! I m scared of resurfacing ..... 😕 jill
eggbiscuit Nanijill
Posted
Hi Nanijill
So what is your primary issue? Pain? Itching? What have the doctors said and what are you doing/taking for it?
lacey2323 lily24227
Edited
Hello!
26 and diagnosed at 19. I also dont personally know anyone else with the condition and am interested in being in a gang!
eggbiscuit lacey2323
Posted
How are you getting along after 7 years? What are your symptoms? I only have the pain, no itching. Have had it for 2.5 yrs
lacey2323 eggbiscuit
Posted
Eggbiscuit, love the tag!
I suffer from way more itching than pain myself (except for sex). Which has lead to lots of tearing then fusing and on and on. Sex has become much more painful due to fusing causing... uh tightness. I'm monogamous so it's not my partner that has changed. I also experience tons of urethral problems, which tie in with UTI's and those have become a mega problem for the past year.
The first 6 years were managable (not quite remission) I'd feel the beginnings of an inflammation, slap some clobetasol on and nip it in the bud. The last six months have been out of hand! Which is ultimately how I found this site, and have found tons of useful info.
Eggbiscuit, how old are you? Tell me about your journey!
eggbiscuit lacey2323
Edited
Hi Lacey,
I am 60 going on 35. It was Christmas of 2018 (Merry Christmas, right?) that I felt something was not right down there. Hunted up a mirror and saw 2 white spots. Looked it up figured it was LS. Went within 2 weeks to doc who diagnosed right away, put me on Clobetasol 2x/daily for 30 days and the white went away only to be replaced by red inflamed skin. Called dr. back and the office said "Don't come back." I thought, well hell....Dr. No. 2 said stop the clob, start on tacrolimus. That stopped most of the red and to make a long story short, the pain became pretty much constant after Feb of 2019. Four other doctors have offered no hope. Two thought I was making it up. (Like who does that at a gynecologist's office?) So, there's coconut oil and olive oil which offer some soothing. Tried EmuAid, Terrasil, Perrin's cream, Aloe, calendula, prescription lidocaine, Aquaphor, vaseline, Preparation H, Eucerin, and now am trying Voltaren gel for arthritis (because of the inflammatory nature of arthritis). The last one maybe helps a little. Have prescription gabapentin for night which helps a little as well. Stayed off of wheat= no effect. Took collagen for 4 months = no effect. Don't eat much sugar anyway. Sex, well, maybe someday...Tried baking soda but don't have a tub. Am very active for my age and can still do yard work, car repairs, woodworking, gym, etc... I cope as best I can as we all do... What else are you using for the itch? Have you tried the baking soda?
eggbiscuit lacey2323
Posted
Hi Lacey,
I typed out a big response to you but the reply has still not been "moderated."
To answer your question, I am about to turn 61, going on 35.. Have used/ every kind of topical preparation I could find but they rarely help. Coconut oil is best. Have a lot of inflammation and docs say they cannot help me. Very frustrating as I know you must be.
lacey2323 eggbiscuit
Edited
Eggy,
Sounds like you've really been through the ringer! Your long reply came through, and I have one in return! 😃
It seem that when it comes to LS, most doctors don't know s**t. I've recently started the baking soda and borax, so hang tight for results though I am optimistic. You don't have to have a bath though- at any pharmacy you can get a sitz bath- like a toilet bowl insert to soak for a bit. Another thing I have read on here was a spray bottle with a baking soda solution to spritz day/night/after each toilet use, I also intend to try that out.
So far I am happy with the emuaid, my current deal is clob for bad times and emuaid for maintenance. I have recently moved off of all soaps, and that seems to be helping. I have had to start showering everytime after sex. And I cannot preach enough about lube. Vibrators seem to be mildly irritating too.
I've also started loading up on other health junk/immune boosters. There seems to be (for lack of a better word) "myth" that if you have an autoimmune disorder then you shouldn't take immune boosters, though I have yet to find any actual hard science saying so. I've started taking monolaurin, TRS, fulvic acid and oregano oil (and a urinary health course). I dare say that my overall health is improving.
One thing that I read about for LS is a low-oxalate diet. Have you looked into that? For my initial diagnosis the gyno recommended an anti-inflammatory diet that I was pleased with, though it takes a lot of discipline to maintain.
Have you tried hydrocortisone? Its worked in a pinch for me. Or for other skin inflammations- which I seem to be prone to- I've used the benadryl gel, though never on my vulva, could be worth a shot.
I wonder how any of your prescriptions effect your LS. Also long term as well.
One big thing that was effecting me was my laundry detergent! I've moved to just Borax and vinegar (though I'm planning on playing with castile soap. Sexy panties are also really irritating. I've stopped wiping my vulva and instead dabbing.
eggbiscuit lacey2323
Edited
Hi Lacey,
Thanks for the letter. I do have a spray bottle with baking soda and borax in it but cannot get a sitz bath here. No drug store even knows what they are!! Unbelievable. Landlady would not be happy if she knew about this.
You are right that doctors don't seem to know much at all. I've seen 7 and will stick with the last one who actually biopsied the skin. I would think in a major metro area where I am that doctors would be more up on the latest treatments for LS. No, hydrocortisone and Emu Aid did nothing. Neither did Perrin's cream, Terrasil, Calendula, Aquaphor, vaseline, preparation H or even the 5% lidocaine by prescription. Ugh!
Good deal on the monolaurin and fulvic acid. Sure hope you will see improvement. I have taken oregano oil and am taking Turmeric, Superoxide Dismustase (SOD) and Methyl Sulfonyl Methane (MSM). The SOD is because I read in a journal that LS patients have antibodies to their extra--cellular matrix which my dr. confirmed. This causes a low level of SOD so I thought maybe taking it would help. Unsure at this point. Oral collagen did not help. Only take thyroid hormone and an eye drop daily so they don't seem to be causing this abnormality....Have tried so many things but one things stands out: topical ointments and creams do not help much if at all, for me therefore I believe it is systemic and am researching this route. A friend's sister let her LS go and now she has squamous cell cancer and is in bad shape. Have tried the anti-inflammatory diet and low oxalates but neither seemed to make much difference. You know the Chinese says LS is caused by "liver dampness," which to them means stress and anxiety....well good luck getting rid of that! Let me know how you do with the spray and supplements.
whatever06758 lacey2323
Posted
Hey all,
I am in my mid 20s went to the doctors around a year ago if not longer as id noticed a white patch along with itchiness. Doctor diagnosed me then had seemed to be fine really apart from the patches and slight itching no pain. i was given dermovate didnt really use as i didnt need too! I have had none stop issues since april! the itchiness is waking me up in the night and sometimes i wake finding ive itched without realising which causes me to flare up worse! started using my dermovate as instructed was red raw! ( i have no choice but to use even though it causes red skin because it helps the itching) i did swap contraception pill but have really heavy periods so i need one! for the last month a new symptom has appeared my bottom has really bad fissures its so sore itchy and also red too!! i did try coconut oil as i read on here it is a god send! But have stopped because i think that is what has caused the soreness on my bottom! I have scaly skin on vagina now that seems rather wrinkly to before too! I am going to insist my doctor sends me to a specialist i am in the UK. Thank you
Wanda79 eggbiscuit
Posted
so glad to have found this forum unfortunately i dont have an appointment with a gyn specialist until october. how did it go with the EmuAid? I just bought one to try it out.
eggbiscuit Wanda79
Posted
Hi Wanda, The emuaid did not help me. Tried on and off for a month. The spray bottle of spring water with baking soda and a little borax may be what is helping. How is the EmuAid working for you?
sue64961 eggbiscuit
Posted
Hi...I've was recently diagnosed with LS..the steroid help for a couple of weeks, now I have horrible burning when going pee...so bad I could scream...I'm so depressed. I go back to Gyn. Wednesday...I pray she can help me...I only have pain, no itching..I'm glad I found this group for support...