Lichen sclerosis has improved over recent years. However, I am now experiencing a disappearing Labia due to shrinkage.
Improvement was so good that I was moved to annual check ups with the next one due towards the end of next month. So not long to wait!
Has anyone else had this? It may be unrelated to LS!
Hi Kathleen, I am a male with LS and I live in the UK. I understand you may not wish to detail any further your condition, with me, as I am male. However, I do follow what many ladies post on this LS forum and what you have experienced with shrinkage is very common. Even I have had to take remedial action myself to combat this, but I will not go into details of that. Hopefully you will get lots of responses from women who have successfully addressed this issue for themselves. Best of luck .....
Hi Kathleen, this happened to me. Once I became comfortable I stopped using the Clobetasol. only to find that I had lots of fusing. I now have Eumovate a weaker steroid which I use most days. I sometimes think that I should perhaps be using the Clobetasol occasionally too in order to keep the fusing at bay. Good luck.
I am wondering as I have multiple auto immune diseases that more than one thing can be going on not just LS.
LS has moved from the front to the back area so it is a puzzle.
HI Kathleen, I'm so happy to hear that you have had improvement for years. I'm still in the mode of how to manage it - only 4 months since recognizing this LS, I'm 72. Can you tell us what you think has worked best for you? Do you have to still follow a strict diet protocol? have you found that any particular nutritional supplements are key to your health? THANKS so much, Nancy
Oh hi again, Kathleen, my LS started for me in the anus and moved forward. So far I've found that the ladies here who've mentioned that diet is absolutely imperative are totally correct. argh.
OH! but I want to mention that one doctor and autoimmune specialist says that statistically if a person have one autoimmune disease they are at risk for up to SEVEN! So that's why I've been working So hard to get to the absolute nutritional sufficiency status to use as best PREVENTATIVE I have access to.
ah, yes, and another of literature search items is that doctors now realize that there must be common causes to autoimmune regardless of bodily location/outbreak. So far, most of the articles that I've found keep popping up with Vitamin D deficiency.
I have not used diet but I am a diabetic so have to watch my diet. I am also using diet and exercise to help my osteoporosis fruit and vegetables are good to have. I have yoghurt every day. Other good foods are avocados and grass fed animals for meat and dairy. This is to help the osteoporosis
.
LS is autoimmune so it is hard to know what would stop that. I have other auto immune diseases as well.
I have advantan fatty ointment and dermeze and keep the area dry as advised by my specialists. The ointment is like clob but not as potent and the dermeze is similar to Vaseline and just keeps the area moisturised.
I am more concerned with the shrinkage at the moment as LS around the back is nowhere near the problem it is in the front part. Well that is what I think anyway.
I think LS runs its course and being vigilant with the ointment or cream is important. It may never go entirely but it should be manageable.
Yes I take vitamin D3 so that makes sense.
What I understand of autoimmune is that the body turns on itself so I am not sure how diet connects to that.
Magnesium is another good one to have and this is for my,osteoporosis as well.
The first autoimmune one I had was many years ago I lost some teeth and the dentist said he was at a loss to understand why. It was like my body was attacking itself.
Then I got Crohns. Diabetes is another one. Back issues could even be that as my GP said the weird thing happening in my sacroiliac could be autoimmune. So I probably have five at least.
Hi Kathleen, Labia disappearing is one of the major symptoms of LS. I have little left, and I dont stress about it anymore because there are worst things..I have 5 autoimmune diseases and so that puts it in perspective. Some women are born without their labia minora and they do just fine.
Yes, I understand there are worse things. I lost the minor years ago and now the major has shrunk as well. Not much we can do about it. Just wondered why now when the LS is only around the back area. Hormones also affect this as well or rather a lack.
Morning kathleen
Both my inner lips have totally disappeared. The one side looks like it was never there and the other side is a long wiggly dark line with a tiny bit of the lip left near my clitoris. At the momoment I still have the hood over the clitoris but that has shrunk a bit.
😢😢😢
Yes, it is a bit depressing for sure.
I started at the back passage and so this was very confusing .
Treated for haemaroids 🤦🏻♀️
It was only when i had white patches apear on my clitorus that i began to question it sadly 😬
I too, have hypothyroidism, diabetes and LS....a sisterhood of autoimmune diseases. In my case the clitoris has shrank and fusing into my vagina....it will restore in time ( how long ? no one knows...) but it may not restore fully or just partially.
Diet is crucial...I eat low carb, sugar free, wheat free, lots of vegetables and invest in good supplements, I exercise, do pilates and yoga, stress is a major and it needs to be managed, find ways of relaxing, meditation.
I have been looking into Mona Lisa Touch....I will book an appointment with my gynecologist and talk things through with him. There is improvement with this procedure....two friends of mine had it done and they feel better. The flares are painful....
My labia just disappeared and I can't beileve it. I'm so tired of dwelling on my VJ all day long. I'm taking the advice of a lot of the information on t his forum and don't see any improvement yet, but I'm trying to be hopeful before I lose my entire VJ. There is so much information I don't know what to do first or is it a cmbination of things. Just not sure. I'm so distraught right now. It's so weird losing a part of yourself even though outwardly no one will notice.
Stop stressing....stress is a major trigger in autoimmune diseases. The disappearing of labia is called dystrophy, it shrinks. My clitoris has shrank and looks buried now....with time they may restore back. It takes time, there are no quick fixes to the anatomy. LS is hard emotionally and physically on any woman...
Just take all the info in slowly, try to adapt and change your diet...sugar free, wheat free if you can manage, lots of vegetables and fruit, lean meat and fish, no alcohol, take good supplements and vitamins, find ways to deal with your stress, relax, meditate...
You must get into a routine looking after yourself, applying the steroid cream and barrier, using bicarbonate of soda mixed into water to rinse after every visit to the loo.
Be strong, I know it is hard in the beginning and a complete shock...but the treatment works if it is done correctly.
Hi Susan, it's a bit terrifying at first, but honestly, once you read as much as you can on the subject and apply the creams/oils etc and understand it more it becomes easy to manage. What is it that you are particularly confused about?