DERM V GYNAE
Posted , 12 users are following.
Hello all. I am posting my experience of diagnosis and management of LS. This may or may not be helpful for other women on here. Please add any comments/questions.
I am 52 and postmenopausal. I saw my GP regarding "soreness" in April this year. Referred to GYNAE.
In May, GYNAE told me I had atrophic vaginitis and "nothing to worry about". Prescribed vaginal oestrogen tablets and suggested emollients and "buckets of lube" for sex.
My symptoms got worse - burning sensation, fissures, NO ITCHING. I suspected LS and saw my GP again. She wasn't sure, but agreed to start clobetasol ointment anyway. I had to look up how much, for how long and where to apply it myself. I decided on every night for 6 weeks, then alternate nights for 6 weeks, then twice weekly maintenance.
Seen by GYNAE again in August. Who agreed there were areas of "lichenification", but "no change in architecture". No real advice given regarding use of steroids. Will see me again in 6 months.
I returned to my GP and asked for a DERM referral. I was seen 3 days ago. She told me it was "barn door" (i.e. really obvious) LS and that I had "fusing of the clitoral hood and some resorption of my right labia minora" (so much for "no change in architecture"!). Although she was more helpful in giving me a definitive diagnosis of LS, she also wasn't much help regarding ongoing steroid use. She even told me I could stop the steroids if I had no symptoms (I have read the work of a couple of DERM doctors on LS who advise that lifelong maintenance steroid use is required to avoid associated malignancy). I will be seen by DERM annually.
Currently I am using clobetasol ointment twice weekly along with loads of Epaderm ointment to moisturise. I wash with Epaderm cream. My diagnosis coincides with a new relationship (not ideal!).
I hope this is useful.
0 likes, 14 replies
SnappyCat JudeBl
Posted
I see 2 obvious lessons in your story:
I think a key point in your story is when the doc suspects LS, and prescribes clob. Why all the guessing when a simple biopsy will give the answer, and when having an answer is so essential to choosing the right treatment?
LS is just not common enough for individual docs to have a good handle on treatments...the best outcomes happen when the patient does good, solid research of medical journal articles and provides them to the doc...rather than waiting for the reverse. So much of this is at the point of "off-label" use, which is in the articles, but not in the official protocol. 2 cases in point...using steroids in perpetuity vs. "as needed" and also the use of tacrolimus. Both are in the journals, but neither seems to be in the books of standard protocol.
ginny00059 JudeBl
Posted
Hi JudeB1
I had a similar experience as you when i was 39. I had a nightmare giving birth and was referred to a gynaecologist postnatally due to all the structural damage to my perineum following a forceps birth. The gynaecologist noticed that my perineum "resembled that of a woman 30 years older". He prescribed oestrogen cream and I was sent on my way. I didn't have any itching or soreness then so with having 3 young children and soon after another, i let it go. It was a few years later aged 43 years when the soreness and intense itching around perineum and anus became more severe. I was diagnosed with gynaecological eczema. Eventually i diagnosed myself, went to the GP and thankfully she was prepared to refer me on to a gynaecologist and she referred me to a gynaecological dermatologist. He is really good, knows what he's talking about and has referred me on for allergy tests too. Unfortunately after years of mismanagement i have lost most of the architecture in my perineum and i'm still only in my 40s! I feel frustrated as if id been diagnosed and treated year ago, would have been saved alot of the problems i have now. My husband and i have sex a couple of times a year as the problems afterwards are generally so horrible, i avoid it as much as possible . I do feel really bad for my husband as he is missing out, it doesnt help our relationship. Although he understands the issues i am having. Sorry not a very positive story but true.
Vita23 JudeBl
Posted
I lost years due to nonworking steroids. I have a hypothesis that Ls is a immune system dis-regulation of the vulva skin either because of microbes, or food allergy (including oxalates due to nuts, greens, beans, etc). I think derms are better prepared to handle this disease, especially if it is advanced. I am currently on Tacrolimus (3 weeks so far), and the sticky skin between the inner and outer labias is gone, color much more youthful, overall healthier-looking skin, although atrophy still there on one side, and occasionally dryness that requires moisturizers.
vickie00010 Vita23
Posted
hi... r u saying that eating "nuts" r bad for LS - as I was never told that foods can affect LS....thanks.... the problem is LS is not a "disease" that many women have SO if there is no money in it research is not done and we all have to try and try and try different things to see what works for us...there certainly r different stages - some active and some not...Vickie
Vita23 vickie00010
Posted
Hi Vickie,
Here is an article on oxalates:
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
vickie00010 Vita23
Posted
would very much appreciate seeing the article...could u send this on your private site...thank u...Vickie
beverly52803 Vita23
Posted
Frustrating to be treated like a snake oil saleswoman when all you're trying to do is share info on diet and how it may pertain to a disease we have come to this site to share info on, isn't it?
Guest JudeBl
Posted
Most of the medical journal articles I've read (I have a PhD and get free access) suggest that LS is an auto-immune disease of skin cell disregulation as one of you put it. Therefore, if your immune system got you into this condition, it may be possible to get you out of it. The question is how and the "how" may be different for different people. About 12% of people with LS also have thyroid anti-bodies. So if you are sure you have LS, get your doc to run a thyroid antibody test (thyroid peroxidase) Start there and make sure you're not hypothyroid at present. In LS there is a layer of skin beneath the top epithelium that is empty- no cells. This is likely where the rogue T-cells have destroyed the layer but why is the question. Other journals point to a stressful precipitating event like a death, or divorce, or some other life-altering thing. Chinese medicine says the liver is congested but I have yet to figure out why this would cause skin problems in the genital region.
Keep moisturizing as you don't want the skin to crack or bleed. Use the clob sparingly. Go through your diet and get out the preservatives and MSG and nothing laced with Round Up (meaning eat no genetically modified foods) Try to maintain your daily activities so you don't lose your mind. Pray, drink, and be well.
biscuit
Vita23 Guest
Posted
Hi, Eggbuiscuit,
I am studying biology, and have been experimenting on me. As a scientist, do you think LS may be caused by a bacterial or protist agent? The emotional part is indeed true to every LS sufferer, but also young kids get it, so to me, it sounds like the immune system gets roused either by some type of an agent or a gene disregulation, very much like psoriasis is. There is at least study that at least identified the parts of the immune system that are elevated (neutrophils, among others). I know that in my early 20s, I had vulvar pain from sex for a while, then I abstained from sex for a few years and had zero complaints for 20 years of marriage and kids before I progressed from a mild vulva pain again to a full blown LS within 3-4 years.
Guest Vita23
Posted
Hi,
My PhD is in a social science but I've taught Health Policy for many years and cared for both parents. I've had to learn a lot of medical things and earlier figured out two of my own problems that drs couldn't (or wouldn't) figure out. So, perhaps I fool myself into thinking I can figure this LS out as well.
There IS a bacterial theory, Borellia is it? I think it is an immune system dysregulation and yes, from what I've read, LS bears resemblance to psoriasis and scleroderma. In LS, the layer beneath the epithelium is empty-it has no cells. I think this is because the immune system has sent out T-cells which have indiscriminately destroyed certain cells that it believes are invaders. Now, regarding neutrophils, I have read that they are elevated in LS. However, mine are low so am unsure what to do with that f inding. It is for certain that I've learned more here, on this site, than I have from any of the 7 drs I've seen. Here is a quote from a woman : For the past few years, I've been taking antibiotic twice daily as these same doctors have found the bacteria Borelia is the cause of LS. Perhaps there's something to this. I shall follow up.
best regards, biscuit
patricia22367 Guest
Posted
hi, I have hypothyroidism but I am medicated and my TSH levels are normal so would l still need a thyroid antibody test?
what is that? I get a TSH test once a year but I don't remember them saying anything about anti-bodies...
beverly52803 JudeBl
Posted
Jude, I must say I am VERY impressed by your optimism with starting a new relationship! Maybe if I were your age I'd give it a go, but at mine I just can't imagine dealing with LS AND a new man along with the complications of sex. Maybe you've have great results with the hormones and the clob? My results have been so-so, but if I can't handle even slightly tight pants I can't imagine navigating sex.
Interesting that your dermatologist did not prescribe or at least mention Tacrolimus. My gyn put me on hormone cream and med strength steroids a year and a half ago (feels like 5 years). It worked great till it didn't after 6 months. Main symptom at that point was a buzzing sensation. Finally started on stronger steroid (clob) plus nightly hormone. Eventually the sensation returned but my gyn left the practice and I was unable to find one that specialized in LS. I finally decided to see a derm (not easy finding one for genital issues) who prescribed Tacrolimus (which I learned about thru women here). Now it's 5 days of Tac twice a day then 2 days of steroid. The buzzing actually stopped on its own a couple of days before the appt and has stayed mild if at all, so I can't really attribute it to the Tac. I have a follow up with her in 6 months. She is young so her experience is limited and her exams are cursory. Having this disease is like living in limbo re treatment.
Like you my hood and one labia are the most affected. None of the doctors really have answers other than prescribing the three choices I've mentioned. Advice on how to use them seems to vary dramatically. Each doc has told me there is no curing AI disease only maintaining. Some women seem to have better luck than others.
I wish you luck !
sarah24152 JudeBl
Posted
Thanks for the update - a warning for me not to expect too much when see Derm next week.
After little to no info from GP & GYN any constructive advice would be welcome.
She specializes in LS so fingers crossed she'll at least understand the ramifications of living with the disease and the toll it can take on day to day life - that at least would be a refreshing change and any advice I will report back.
Best wishes
JudeBl
Posted
I am a doctor (Emergency Medicine, so skin conditions are not my forte! Although some people do turn up at A&E with rashes). My approach to LS has been to search out people who are experts in the condition and have done robust research and take their advice. It is clear that much uncertainty exists regarding the best regime for long term management. I cannot offer any advice myself. There is a lot of rubbish on the internet, so be careful with unconventional treatment plans or cutting out major food groups without appropriate supervision.