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I am new to this site and I apologize if there is a lot of discussion already on my question. I am asking whether I should be guided by a biopsy result that says I don't appear to have LS, although two dermatologists and two urologists plus my PCP all think I do. But a third dermatologist who did the biopsy doesn't think I have LS,
I think I have almost every symptom and medical condition/history that I've read about as well as comments that a biopsy is not necessarily going to confirm (or say no). This dermatologist wants to do another biopsy, but the scar from the last one she did has created its own problems (anyone have a similar experience?)
To me, at the end of the day, it doesn't really matter if it is LS or not because the symptoms (and flare-ups) are still there. Is that a silly conclusion?
Bonus question -- in reading about diet and LS I discovered that the #1 food to avoid, which is also (literally) the #1 food I eat, is spinach. I have a raw spinach salad almost every day. Should I stop?
Thank you, and my sympathies to all who are struggling with LS.
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i would say that a biopsy DOES matter. THE primary treatment fir LS is high potency steroids. if you don't have it, you shouldn't be on them. if you DO have it, you should be using them routinely forever.
were you using steroids before biopsy? if so, that can invalidate your results.
Spinach. well, you probably need to do your own test. go off for 2 weeks, while keeping everything else the same...see what happens.
Thanks to you and everyone else who took the time to reply. I will answer each person's individual comments or questions, but hopefully all will see this thank you.I'm impressed with everyone's knowledge but even more for the community support.
I understand your point 1. I have had for many years almost all of the conditions that are associated with LS. The diagnosis came a year ago when a dermatologist examined me, but she declined to do the biopsy. I went to a urologist but she said this kind of biopsy should be done by a dermatologist, so I found another one who did it. The result was not clear, saying it could be because of some kind of trauma. Since then I've actually seen two more dermatologists and two more urologists, as well as two other doctors.
The last doctor actually took photographs (a first for me, is that done?) to send to her partners. One thought it was LS, the other did not think so. But I don't know that a photograph is the best way. They show the biopsy scar pretty clearly. And they also show what is usually written as signs of LS. I'm thinking my pictures could be used to show others what LS looks like -- if that is what I have!
Especially interested in your comment about how steroids could affect the biopsy results because for the last five years I have been prescribed a fairly strong steroid that I applied exactly where the biopsy was taken, usually two weeks at a time every 3-4 months.
As for the spinach, it took me many years to finally like eating it. I think I'll wait until other options don't work!
I will try to get back to other comments soon enough, so please know I've taken all of them seriously.
HI Micall - welcome. Not silly questions at all, dear. Ha. If I had a vote it would come out 4 against one. That should guide you - on top of your own intuition and actual experiences. I'm 74 and realized I have LS about 2.5 years ago. My thought - even biopsies can give a false negative, just look at what we are all experiencing worldwide. I've read of quite a few women here who have said that the biopsy caused problems. who needs more pain?
If one of the 4 who said yes to LS based on their best EXPERIENCE, I'm sure one of them will write you a script for a steroid. I'd like to comment though that I have not taken a steroid ever for this, but I did research the nutritional aspects of LS and with my own cardiologists approval (who appears to know more about this subject than the ob-gyn he sent me to for confirmation ( she was able to give a visual confirmation - just like 4 of your consultants).
If you are interested you can print off my list of supplements that has put me in comfort zone, by going to my name and clicking on my name and the tab called "discussions" and find several items Nutritional Protocol etc...
OH! by the by, the one major major dietary no-no that I have ever read about is no SUGAR, in any form, until we have quieted down things and then we can go back to fruit and a little piece of sweet - but really not much.
Some women find that they can not do wheat and others that they cannot do dairy products. you'l have to test, like SnappyCat mentioned.
Good luck, and let us know how you are doing.
I have had symptoms for years but was diagnosed a few years ago. A biopsy was done by my dermatology consultant and it didn't confirm LS but he said that my symptoms all point to it. Since then i have had lots of flare ups and fusing of the skin. So biopsy is fairly unimportant in diagnosis, symptoms are more indicative.
I took topical steroids due to bad flare ups for 6 months solid, they didn't help one bit. So i came off them and expected a deterioration but didn't have one, it remained the same! So i started using emollients twice a day and have massively reduced my sugar intake and have had an astonishing improvement in my condition! i even had intercourse with my husband for first time in 6 months!!
Think steroids have a place but try natural methods first. Diet is massive and i think stress affects me massively too. If i have alot of stress at work, it gets worse.
hope things improve for you soon
I was given the choice to have the biopsy but chose to go with my doctors diagnosis based on her extensive experience with LS. I also followed her advice to stick with the steriod ointment working together to get it under control and then on a maintenance program. I do get flare ups and agree they are generally related to stress and sugar.
One of the beautiful things I have discovered through connecting with others on this site is that we all have different experiences but support each other with what we have discovered but ultimately we have to find what works for us and our bodies. I was keen to get the LS under control and on a maintenance program before experimenting with the foods and other possible contributors. I found dealing with the initial shock enough stress in itself and settling down into an acceptance that I really had to take care if this part of my body more than ever, enough to work on with the support of ointment. One step at a time. For me there has been little change in the vulva area since diagnosis but I still have to look at what is going on in my life that brings on a flare up.
I never had a biopsy. I was diagnosed 6 years ago by a gynaecologist on examination and my description of symptoms. I would trust your instincts and the 4 professionals who think you have it. And I would start steroid treatment if they are suggesting it. I have managed on Betnovate all this time plus copious moisturising and vitamin supps from Nancy's list. Lately only using the steroid once a week. I think Betnovate is one of the weaker steroids.
about your biopsy result, if that doctor performed one and the results were positive for LS. Why the request for another biopsy?
For me my dietary intake played a big part in my flare ups. Once i realized sugar was a contributing factor to my flare ups, I REALLY limited its intake. Since it is believed to be autoimmune related, i started taking veggie caps of black seed. Its been a little over a month now, i must admit the symptoms have subsided a lot. i make sure my water intake is increased from what it use to be. Which was very little water daily. Every persons symptoms are very different so we have to keep trying different things to try and live comfortable with LS. LS has really affected me emotionally. I feel like a walking GERM most days and to look down there smh is another story. I pray this group is as helpful to you as it has been to me. Just beening able to openly discuss it is relieving. I can't discuss it with friends or family members without being left with feelings of EW! girl what you got EW!
Sorry, I wasn't clear. She said the biopsy was not conclusive. the report said "The prepuce epidermis shows foci of necrosis which are greater in the
outer layers. This suggests a reaction to external injury: severe
irritant, thermal or traumatic reaction."
When I saw her a week ago, the symptoms were the same so she took pictures send to her partners, one thought it was LS, the other didn't. Photos are a first for me. I don't know if anyone could tell what I have except a mess.
So she wants to do another biopsy next month. I'm more concerned about another scar because of the problems the one I have created.
Anyway, appreciate your thoughts.
Hi miscall, I was mistakenly being treated for LS until I developed a bad mouth. I had a biopsy and am now being treated for Oral Lichen Planus which I do have below also
. The symptoms are pretty similar
Hi, i was on this site a very long time searching for what can help my symptoms. #1 I learned to mix vitamin E & Vitamin B oil, i put half and half into a new bottle (travel size) & i applied it morning and night. I also took 1 zinc pill every morning. In two weeks my symptoms disappeared. I am thankful I came across the post from years ago, so just thought i would share. Good luck & God bless. Ps: I learned the steroid cream thins your skin out if used too much causing more cuts and tears.
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