Diagnosis from gynos and dermos!

Women's health
1

I am totally confused! Over the past 14 months I have seen two gyno's and two dermos.

Today I went to a gynaecology clinic and was seen by a dermotologist! Only found that out when I read the information on blood test paper.

She told me I had Lichen Planus in the vulva area, hands, mouth elbows. Ok, I had been previously been diagnosed by two gyno's and one dermo that it was Lichen Sclerosus!

I was discharged four months after being diagnosed by two gynos! I saw my own doctor and asked her to be referred to a dermo! The dermo diagnosed me with LS. Continue with dermovate ointment. He would refer me to a vulva cancer consultant. So since January I have been doing my bicarb of soda baths, coconut oil/emu oil plus clog routine.

The dermotologist who I thought was a gynocologist told me that my undercarriage was well controlled. So being it is now Lichen Planus or is it, totally messed up my head!

My treatment as from today is no more bicarb of soda, coconut/emu oil!

Use clob every other night, wash with QV gentle wash & moisturise with hydromol!

Can anyone give me any advice as to what is best for washing and moisturising!

I question myself have I got LS & LP?

I have been through so much stress and trauma this year I am at the stage of 'insanity'! My quick temper, irritability, lack of patience is about to blow me away. Bursting into tears for nothing, wanting to escape for some ME time away from every one I know! Not taking calls, keeping my friends at a distance. Nothing I fancy to eat or drink.

Life is not pleasant at present!

Any advice, thank you, Anne

2

So sorry to hear what a difficult time you have had. No magic cure I'm afraid, I wash with Dermol 500, nothing else. Don't cut yourself off from friends its important to explain how you feel and what you go through. It is awful I honestly know but I  don'thave different oppinions/ ddiagnosis. Go straight back to your own Dr and hopefully they will be able to discuss and make sense of everything. Do what gives you comfort and relief  and try to  live your life as fully as you can, don't let ls or lp rule your life. xx

3

Hi Anne, you sound to be having a rotten time. Might you be able to escape fora few hours to just relax a little? Stress is really bad for LS. I know how difficult it can be when you don't seem to be getting the help you need from the medical staff. I am seeing a gyni at the moment who doesn't really seem to be on my wavelength. I am trying just to take one day at a time.

Some days easier than others! Good luck, Ann

4

So sorry your in such a state. I agree with Joyce's advice though. See go and say you would like a diagnosis for one or the other and not fobbed off . This condition is so unpleasant it does mess with your head. Your not on your own as I have only found out last few days. We understand and support you. God bless. Hope you get sorted

5

Asorry your going through this it's sounds like your depressed and o can understand with this dreadful illness you could possibly both LS and LP st this moment in time I'm struggling to keep LS under control I'm seeing my dermatologist on Monday for a emergency appointment as one area is a concern to me I'm thinking another biopsy will be done that will be the third one but in a different place 

6

Hi, it is not unusual to see a dermatologist for this condition and so I wouldn't worry over that.   Some people see gynecologists and some see dermatologists.  The difference between Lichen Sclerosus and Lichen Planus is usually that ulcers form INSIDE the vagina for  Vaginal Lichen Planus and therefore it is more difficult to treat. With Lichen Sclerosus ulcers/sores etc are always on the outside.  Does that help you at all?    

7

Thank you Joyce,

I don't have any faith in the professionals.

I have tried to talk with friends but they really do not want to try and understand! It seems that because they cannot see the problem I should be fine.

My doctor does not know anything about LS, she told me it is not presented often.

I can only believe that because the dermo told me it looked well controlled I must have been doing the right treatment so why change something that has been working. I am not in any pain, itching or sore go I might as well stay with what I know.

It is a horrible condition to live with.

You are right I must get on with life and enjoy. xxx

8

I think to get the diagnosis you have gone through hell with very poor medical support, your story is exactly same as mine.  I have no idea if mine is Planus or LS for sure and I think when we are battling to get a diagnose and treatment it causes an awful lot of stress,  the energy it takes to do this is overwhelming and then you have no energy left to socialise or chat to people.  There’s nothing left in you and I think it’s hard to discuss this disease with a lot of people as people don’t understand it and are clueless in how we get this disease anyway.  Maybe you need to just take a step back and use the clob,  the clob is for Planus as well as L S do some things that try to take your mind of it, when it’s all sunk in hopefully you will feel a bit calmer.  A lot of us are the same and knowing this hopefully will help.  You sound intelligent and just want to know what is the matter and get the proper help x

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Helped me Guppy x

10

Thank you Ann,

Finding space for myself is difficult, but it is time I say NO to certain demands that are expected of me.

Stress within my family is overwhelming at this present time. But I am going to have to distance myself from it all. Let someone else in the family take over the roll of always being available.

I have certain 'dreams' that I want to achieve over the winter, I will take the 'bull by the horns'!

So grateful for the ladies on this forum, always receive a positive boost. 🤗

11

Thank you Muriel,

It's amazing that when you connect on this forum you realise that you are not alone with this condition, many in a lot worse position.

I will get a result in the end. I take it that it is probably LS & LP..

Your support and understanding is a blessing.

God Bless, Anne.

12

Hello Gillian,

I was thinking that depression had dumped itself on me again. Now hearing it from someone else I believe that I know how to deal with it. I pulled myself out of it when I had the first diagnosis. Accepting that we have to live with it and keep up our daily routine.

Sorry you are struggling to keep LS under control. Good Luck with the dermotologist on Monday, hope the results are good.

Take Care of yourself,

Thank you.

Anne x.

13

Hi thank you I'm not looking forward to it I must say and I hope you find the true diagnosis as well and try to get some relaxing time got your self 

14

Hi Sue, you certainly hit the nail on the head! I felt overwhelmed and physically and mentally drained!

The medical support I have had is virtually zero! My doctor misdiagnosed me with vaginal atrophy for 18 months and I had to suggest a referral to a gynogologist. She was a lovely Indian doctor and as soon as she looked she told me it was LS. I burst into tears and she said "I did not mean to hurt you"! I told her it was a relief to have a diagnosis that made me cry. Unfortunately she was a locum and never got another appointment with her. But she had explained all about the condition. The next one was a locum who was awful, I saw him twice. The first time I did not even let him take a look. The second time he insisted I had a biopsy because he believed it was LS. I understood you had to come off clob for a week before a biopsy. He said that it did not make any differnce so he went ahead and did it. I will not say another word about that one but I learned today he has gone! So it went on until today's visit when I was told it was LP. I had already worked out that I had oral LP. I sometimes wonder why there isn't more awareness about LS & LP! It seems to be taboo!

I am going to carry on my daily routine and when I go back in three months I will request another biopsy. Let go of stressful situations if that is possible! 🙄

Thank you for your support and understanding, Anne.

15

Hi, I have had an ulcer at the side of the entrance to the vagina. But the rest of the problems like fusing are all on the outside, hardly any structure left. Thank you, that has helped. Anne.👍

16

Hi anne, then its sounds like Lichen Sclerosus. What i have realized over the years is that most 'specialists' don't always have the answers, but rather than admit that they will send you down the wrong path.  I have Oral Lichen Planus, but thankfully I have Lichen Sclerosus, I say thankfully because Vaginal Lichen Planus is much harder to treat.

17

Hi Sue, If you ever experience sores inside of the vagina, (usually on the inside of the labia minora) than that is most definitely Vaginal Lichen Planus.  However, if everything you experience is outside of the vagina than that is Lichen Sclerosus.  Doctors get mixed up with the two.

18

Thanks Guppy, like Anne I had ten months of getting to the bottom of my sores and the biopsy said inflammation I questioned what they had biopsied but was none the wiser,  in the end accepted it and used the ointment, well got cream but asked for ointment as on here I learnt ladies said ointment was best so they didn’t get that right. I always wondered if it was l P as it’s more red than white patches x