I was diagnosed around April this year. Looking back I can see I made some errors, but I also think my Gynecologist failed to impress upon me the gravity of this auto immune condition. Only now in October can I see the results of this...some of my labia has fused! and quite honestly I do blame myself, but I also had no idea what I was dealing with...anyway, I thought I would ask other people to share their experiences of their doctor and their treatment....
i feel the same way..i was diagnosed in May...v quickly after my labia minora disappeared...had alot of soreness and felt depressed. My dr saw white patches at my yearly check up the year before, but didnt think of LS. I felt vey letdown. She says she sees about 10 cases every week and was quite low key about everything, which made me feel that it wasn't such a big deal.
I am trying to reduce my anxiety, stress etc...have started doing a course in mindful meditation...at least we have this wonderful group.
Hi Guppy,
I never had boils , or not that I know of because I never looked at myself until
recently. It began with severe itch around the anus, so bad I went to the doctor,
I had been sitting on ice cubes etc. She told me to stop being so silly and that here wasn't anything wrong. However she didn't look and I had to beg her to please check and she did so reluctantly telling me to stop the nonsense. I never
went back to her but continued going from one GP to another. That was over 30 yrs ago
I think it is disgraceful, the tme it take for a diagnosis and the lack of infomation given. My doc said I had it and all she did was gve me a printout from the site and give me a prescription for steroid cream and told me itis a manageable condition. I told her I wasnot convinced thave LS and askd to be refered to a GYAE. The gynae convinced I not got it, although I have vagnal atrophy which is more to do wth menopause and I take vagifem now. I have asked to be referred to a dermatologist for firm diagnosis, appointment January. I am not surprised you did not know what u are dealing with. I did not know until I visited this site and the medical teams, in a word, are PANTS as far as diagnosis and explanations given. This site brilliant. I am just managing using E45 shower cream and lotion as the steroid does not agree with me. Until I am properly diagnosed I ain't using it as it just made me sorer, near the vulva. Also using daktacort antifungal which helps. Hope this info helpful.
I keep trying to write and somehow my computer wipes everything a
I will try once more to continue.
I eventually found a Gyn who had a great reputation and she turned out to be useless Just kept telling me to try more HRT eventually took a bio but got no results from her and out of the blue she left and
went to Texas. I continued to search for a dr and found the best one
yet, I have been with her for yrs. She diagnosed me and sent me to
a specialist at the hospital (probably the vulva clinic that Morrell mentioned just recently on this site) I didn't know it at the time.
That doctor put me on a machine - threw a peice of paper in my hand
explaining what i had. Handed me a prescription for a cortitsone cream told me to be very careful as the cream was dangerous but
that I must stop the itch which was now all over the vulva and anus.
I left feeling damned if I do and damned if I don't. Really scared.
I had one more visit with her and then she disappeared to Toronto.
My GP just keeps refilling the prescription. I have one more thing to
say but I am hesitant as I don't know if what I am seeing is different or just wishful thinking. Somebody on this site said to use baking soda
in a spray bottle after every bathroom visit. I bought a little spray bottle at Michaels Craft store and it has only been a short while but
prior to using it I looked like a Barbie and now I have one side of my minor labia. I am seeing my dr in Dec in Ottawa. I do not have any
itch and haven't had since everything disappeared I am now completely baffled.
I think it's very much dependent on whether Docs have any knowledge of this condition as to whether you get diagnosed. I suffered for around 10 years before diagnosis, my then Doctor kept prescribing me thrush treatment. She did refer me to a Gynae who was an elderly gent and pretty clueless, at the time I had labial adhesions and during the exam he pulled my labia apart causing the adhesions to split, well to say I could have knocked him out is an understatement, the pain was excruciating! It wasn't until I changed Doctors in 2000 that I was referred to Dermatology, a biopsy done and LS diagnosed. Hopefully things have progressed since then and more Doctors are aware, if not then they should be as according to my Dermatologist it is quite a common problem.
i have had good treatment since being diagnosed and I'm seen every 6 months which is my choice.
Sheila, are you saying that you think the baking soda is responsible for the re appearance of one side of your minor labia? Have I understood that correct?
All these stories are interesting, and helpful actually to people new to Lichen Schlerosus.
Use Manuka Honey - the strongest one you can get - rub on a pea size amount every night. Cleared up my LS two years ago - still use it, still clear.
I had never heard of LS, and then it is hard to know what you visit the doctor for. I started with my complaining eight to nine years ago. Combination of factors - thinking it had something to do with age perhaps. Vagina narrowing and intercourse becoming too painful, thinking it was perhaps due to the incision at giving birth etc. Finding my own reasons. Till I finally was referred to a specialist, who knew what it was and took a biopsy to know for sure. But the LS was rapidly progressing by then and it looked that perhaps we were too late.
I needed a dilation procedure done. After the procedure I cleansed with baking soda in my spray bottle and discovered that the LS became less vicious. Now I have been doubting my eyesight but truly see that it seems as if the fusing is melting. Also taking baking soda in my bath. Skin disease on my feet is also retreating.
All this starts to shed an entirely different light on things and feel there is hope.
Hanny, I appears your not the only one using baking soda with good results...
Hazel..How awfull!...but your right, not many doctors are aware of this serious condition, and often by the time they are clued up its too late for many of their patients.
Carmarie, Yes it is bad that there is such a lack of information out there...
I have ordered some Emu oil to use, which impressed me, you can find it on Amazon...I'm going to give that a go.
Anna, I can understand you feeling depressed, I was pretty shocked myself, its a big deal for sure! No wonder you felt let down.
re diagnosis. I had itching and soreness for about a year, GP suggested menopause and thrush and treated accordingly, Then I broke out in weeping ulcers where the skin broke down and the GP said that at last we knew what we were dealing with - Herpes! As you can image this did wonderful things for my marriage, as herpes has to be contracted somewhere, and each blamed each other. It was only when I failed to respond to the 'herpes' treatment -six months of weeping ulcers, such fun - that i was sent off to a genito-urinary specialist who took one look and said LS. I must have been one of the few people who was pleased with my diagnosis, as at least it meantthat marriage survived and I no longer felt contagious, and didn't have to keep isolating and boiling all my towels, washcloths etc.
Yes Guppy, that is correct. How ever I don't expect to ever look like a real women again. This saddens me greatly because I haven't told anyone.
I feel so ashamed of what I look like.
This is so interesting. I went to my cool young female GP in 1974 with a screaming sore like the one you describe, Kate, and she diagnosed Herpes Simplex II on sight. Her office was in the heart of what was soon to become the Gay Village in Toronto, so she was focused on STDs. All these years I've believed I got it from a toilet at work, since I certainly hadn't had contact with anyone but my husband and he never got cold sores. I never had another herpes outbreak down there. When I think of it, that happened before I started getting the tear in my perineum. Forty years and half a dozen gynaecologists and dermatologists later, I got a pseudocystic smegmoid abcess (we have a discussion on it – https://patient.info/forums/discuss/pseudocystic-smegma-abcess-295940) and the emergency physician diagnosed post-menopasual vulvar atrophy and sent me to my present gynaecologist who immediately diagnosed LS. Her practice has 1000 LS patients.
Sheila, the baking soda solution (excuse the pun) seems worth trying, what exactly do you do, how much do you use etc ?
Hi Guppy , so sorry to hear of your troubles with your docter, l have just spent the last month in agony , l have a had a water infection for 3 weeks which my docters (lv,e seen 6 of them ) could not find the right antibiotic , samples were sent to the hospital , they took over a week to come back , eventually they hit on the right drug , it took 2 courses of this powerful drug to work , well l hope its worked , ite been 3 days now, fingers crossed . at the same time what l thought was my LS was driving me insane , inflamed , very painful , l dreaded the loo ! Well it turned out on about the 4th doc that it was thrush , this thought came to them when l got thrush in my mouth and they could say for sure it was thrush , so she gave me some different washing soloution and some cream . This within a day and a half made my intire pubic area swell up into the most painful hard lumps, so back to the docs l went and was given a tablet to take , when l got it home the label said NOT to be taken by over 60 year olds, so l had to wait another night to check that out , l took it yesterday and can see improvement, but l can also see see the state l am in , l have delveloped a white spot which feels bead like to touch , is this another reaction or something else to worry about ? also things are fusing together , not a good look. l have asked since August to be referred to a consultant , l got referred to a uroligist last week and was told l did not need a consultant for my LS , l went back this week with my husband ( bless him ! without his support l could not go on !) and l sat there and demanded to see a consultant l nearly went down on my knees ! She said YES ! l promptly made a fool of myself and burst into tears ! l am now just putting a barrier type cream on and washing with my old faithful aqueous cream until my appointment comes through , hopefully soon ! It should not be like this , the docters dont seem to notice or care that this thing really hurts , l feel like l have been treat like a lab rat ! they are just guessing when they give you all these pills and potions , the thrush was caused by the amount of strong antibiotics l have taken recently. Sorry for ranting on , but this forum is the only place where anybody understands , l am so glad l found it . Keep your chin up Guppy , you never know one day a bright dermatoligist ( have l spelt that right?? ) will make a break through , there is always hope. l have a heart condition which until last year there was no hope for , it killed my grandfather, my aunt and my lovely brother , but now a brilliant docter in Leeds as come up with a pacemaker which while it is not a cure , can save your life . l was born blind and my mother could not get me any treatment , so she went to church and prayed and when she opened her eyes a priest asked her what the matter was , as a result of speaking with him ,l was put into an experiment , and it worked now l can see ! so please have hope , miracles happen l know they do , have faith .
I will try again. This computer is dreadful. I wrote everything and it just disappeared again.
I bought a 2 and a half inch spray bottle at Michaels craft store. Are you
in Canada? Put 3 pinches in the bottle and fill with tap water and keep. handy so that after every bathroom visit you can use it quite liberally.
Just an added bit of info I also keep another spray bottle with
household peroxide and spray my feet. I suffered
terribly years ago with growths from arthuritis my dermatologist at
that time said I could never get rid of that stuff. She repeatedly treated
me uselessly and painfully. Now I treat myself and it cleared up in one week. No more painful corns or mucous cysts or anything else.
I still have ugly feet but not with those things - I can'''t help that.
That is a shocking story!..I cannot believe how your doc got it all so wrong, thank goodness it all worked out in the end.!