Written off!

My gyno missed mine.  I had no symtoms other than occasional itching and painfil sex. One day I looked and saw labia minora fused on one side.  I called gyn and talked to nurse.  Nurse acted as if she had not  heard of a fused labia minora.  At that time I hadn't, so I was going around in circles trying to explain what I saw down there.  She just acted like she didn't understand what I was saying.  I felt like an idiot. Nurse said I couldn't get an app't for a month, so I decided I would wait for my all ready sched. yearly check up 6 months out.  When I saw gyn 6 months later, she gave me exam and pap and never mentioned fusion nor the band strengthingacross entrance of vag.  I had been complaining to gyn for four years about pain with sex.  She just said having more sex helps and wanted to know if my husband was in good health.  By this time I thought a strange looking labia and pain with sex was all due to aging.  After another 6 months,  I went back asking to be put on hormones so I could have sex.  She examined me again...still did not mention the fused labia minora or any white spots or band. Went back in one month, told her I was still having pain with sex.  Examined me again,  finally she mentioned  LS.  A year after me finding my fused labia and 4 doc. exams and many reports of painful sex she finally said it looks like LS. I believe many gynos are not interested in any other women's gyn. issues except preganacy.  There isn't anything wrong with that, but if they are treating older women and women with other issues besides preg, then they owe it to us to be informed and ignored. 

It's wonderful that we can all be so open and discuss absolutely everything on this forum!  I have been using Vagifem too but I'm not convinced they are doing anything.  I am taking them to try and help my bladder problems.  Bowel movements?  Well, having had absolutely no problems in that respect during my lifetime, I too have noticed a change in habit which happened at the same time as my LS started.  My LS affected my anus and I think I just became a little apprehensive about the whole thing.  As you say, need to keep hydrated to  keep things moving freely!

 

It is hard to get the right spots I agree. A mirror in one hand only gives you the other hand to manoeuvre and apply the cream. I rope the husband in to do mirror duty most times but of course not everyone has that option! Others may have some clever one- person ideas, I would be very interested myself!

Good luck with the Dermovate. It does take a long time evidently to settle.

i go to a vulval dermatologist tomorrow in another city as the steroid even after 8 weeks makes me burn worse than the LS.

 My dream is she will say it's all been a mistake, you don't have LS, it's some other minor thing we can fix. 

Dreams eh, you gotta love them! 

 

Thanks for that.  I have started the Dermovate again.  I straddle the bath, put a mirror on the side, and try to get the cream onto the right spot.  Years ago I was told it was psoriasis and was given surgery that was a nightmare (long story).  I don't involve my husband as he knows I have "sore skin".  I was interested in some other comments such as protect the area with Emauid cream.  I also saw another comment about using KY jel which I have got.  The gynae said rub Vaseline on the area when I go swimming.  I don't think the medics have anything to offer other than medications or procedure (surgery).  I also have psoriasis and ichthyosis (since birth) which are also auto-immune conditions.  Avoiding stress is important but not always possible. I don't use anything perfumed, only vegetable soap and the gynae gave me a cream to wash with in the shower.  I'm also on medications for high blood pressure and it says a "very rare" side effect is a worsening of skin conditions such as psoriasis. I must be the "very rare" person.

Hi everyone

Has anybody ever had abnormal cells after a smear and had colposcopy

Pap smear? Bad cells on the cervix? Yes. I had a conization in my forties and after a year or two of follow-up another conization. Fine now for nearly 20 years. It was not fun. But it beats cancer.

 

Hi morrell

I was the same in my 40s and now have LP and oral LP do you have both these

LS and psoriasis.

I have been biopoped for LS, Lichen Sclerosus for, as the British refer to as the undercarriage and Lichen Planus is in the gums and mouth.  There is a third which can erupt on the skin.  I found a mark on my hand and thought it was the skin but after going to the Dermotologist who biopsed the mark is as of today is waiting on the results.  He also told me that on the skin it is not just one spot,

it covers the whole area as in an arm or face. 

I have it on my back and one breast.  It has also appeared around an appendicectomy scar (I had my appendix out 50 years ago!).  A couple of weeks ago I scratched my abdomen, no idea how, and lo and behold, the skin around the scratch has turned pale purple/brown.  My LS patches no longer itch (those on my back were terribly itchy to start with) but they are discoloured.  Just resigned to the fact that my body is now susceptible to these changes.  I do worry as to where LS is going to manifest itself next.

Hi Gill,  Sounds like you are a an LP, LS recipient as well as I.  You also mentione skin problems.  I have read several snippets and skin is mentioned along with Amlodopine for high blood pressure.  I just wonder if there could be a connection.  I also just had a biopsy on my wrist, noted by another LS sister who is on Amlodopine.  Looked it up and can cause all kinds of skin problems.  I use all natural products from wipes to soap and keep lubricated with Aquaphor, an over the counter product.  Good luck LCS siser in care.

 

Just had a very interesting consultation with my dermatologist.  He invited me to return to see him as he had a visiting dermatologist who specialises in nail problems (I have LS crossover to LP of the nails).  I was told there were two treatments for the LP:  Oral steroid, Acitretin, which has some fairly unpleasant side effects or a painful (his words) injection into the nails every 6 months (I think this is a steroid injection).  The routine is to treat one nail only initially, see what happens after about 6 weeks and, if successful, treat all of them.  He offered the trial injection there and then and I agreed (before I had time to get stressed about it).  I had 2 local anaesthetic injections before the nail was injected and it wasn't nearly as painful as I anticipated.  The nail went completely white and, yes, it did throb once the LA had worn off.  I'll let you know what happens.  However, I was given a couple of information sheets - one on Acitretin (the good side of oral treatment is that it treats the whole body and not just one specific area, so should help LS too), and the other sheet is from DermNet NZ and explains all about the different types of Lichen planus.  I realised I have a couple of the different types.  It may be that what was assumed to be LS on my body is in fact LP.  It does say that certain drugs can contribute to LP and, in LP of the mouth, metal fillings can cause an allergic reaction which contributes to oral LP.  I'm not sure if this forum allows me to enter a website address but it should be easy enough to find from the information I have given.  Every little bit of information helps.

Hi Kathryn

Thanks for this great information just wondered do you have OLP and LP and talking about causes have you ever had an abnormal smear and treatment X

Hi Karen

No, I don't have oral LP and I have never had an abnormal smear.  I have LS in the genital/anal area and some patches on my back.  I have LP of the nails and I also have purple/brown patches on one breast and around my appendix scar.  Having read the notes from the dermatologist, I also think I have another type of LP which occurs in response to skin injury ie I had a very slight scratch on my abdomen which now has a pale purple/brown patch around it.  These patches only seem to occur on my torso, not on my limbs.  My dermatologist did tell me that LS patches on the back aren't itchy - I must have been imagining it then!  Luckily my "imagination" responded well to mometasone - no itch but still have the discoloured patch.