Vulval Dermatology appointment next week what to expect??

Women's health
1

Hi

I have had an ongoing problem which needs to be diagnosed and have been referred at my own request to a dermatologist on Tuesday, (Think it's a vulval dermatoligist) and am not sure what to expect. I have a recurring soreness and burning anal area and  vaginal atrophy I was given vagifem for this. and Clob for anal area which I think I am allergic to so doc said to stop using it, and not to use anything as she did not think is LS, (Other doc thought it was). So I am hoping too get a diagnosis with the dermatologist. Can anyone offer advice eg will there be an internal exam also and what questions should I ask? Thanks

2

Sorry to hear you are having such a bad time with it. I guess first things first. Is the doctor your Gyno or GP - sounds like you need to get a referral to a Gyno who will do a biopsy so you will know for sure what you are dealing with. The dermatologist shouldn't do too much harm. Probably looking more than anything else. What not to use, like soaps, talcs, wipes, etc. get you to use a barrier cream that will protect and soothe the area. I use Sudacrem same as you would use for a baby. They should also do a swab (should not hurt) to check/eliminate certain conditions. In the meantime try salt or bi carb baths if you have the luxury of time or get spritzer bottle and use after each visit to loo. Most importantly DO NOT STRESS.  Good luck!

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These are the same symptoms that I had been experiencing for years without really thinking it was anything to worry about.   I used to get soreness that would come and go and must have had the vaginal atrophy for a long time before I realised it was happening.  The only way I found out that I had something wrong was when I had a small blood spot just up inside me that was diagnosed as a harmless thing called a cherry angioma but while examining me the doctor mentioned the redness and I eventually got referred to a consultant with the suggestion that it could be LS.  By the way, the angioma burst two days after I saw the doctor and I was shocked at how much blood could come out of a little spot!  Anyway, I saw the consultant who said he thought it was LS but he would do a biopsy to confirm it.  I was given different creams to put on but I found it made it more sore so stopped using it.  I had an appointment at the hospital for some biopsies to be taken but the results were inconclusive so I wasn't really any the wiser.  I was however told that LS can lead to vaginal cancer and that I should have a checkup with my GP every year.  As for the LS or whatever it is, I still get a few flareups but I think this coincides with higher sugar levels (I have had diabetes for 20 years) so it could be the sugar in my urine but as my sugar levels are fairly stable I don't get it very often now and I don't put anything on it regularly, only using Sudacrem when there's a flareup.  Sorry if this isn't much help but hopefully the dermatologist can give you a better idea of what you have.   I would think there are many hundreds, if not thousands of women walking about with vaginal atrophy that they don't know about because how many give themselves a regular checkup with a mirror regularly, not many!

As for your seeing the dermatologist, I don't know what to suggest really.  You have had one doctor say they think it is LS and another saying they don't think it is LS so maybe the consultant will suggest some biopsies being taken but, as happened to me, it doesn't always confirm it.  I expect the consultant will want to have a look (obviously) and the atrophy will need to be looked at so you have to be prepared for that.   If a biopsy is suggested it's embarrassing but I just lay back and let them get on with it.  It didn't take long and only meant a quick visit to the hospital then a wait for an appointment to get the results.   I don't know what questions you can ask, apart from how to keep the soreness at bay although lots of people describe itching but I don't get any of that which makes me wonder if I have got the LS that they all describe.  I hope it goes well for you on Tuesday.   

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Hi Carmarie,

I doubt there will be an internal. Once you're inside the vagina it's not 'skin' any more. But you'll definitely get the correct diagnosis, so that's great. Few of us have access to a vulvar dermatologist. If she's in doubt and therefore has to do a biopsy, that's also a good thing. It's a pinchy feeling and takes a couple of weeks to heal.

If you look through old discussions here there are some about biopsies.

 

5

Hi Carmarie,

Sorry your here although you may pick up some very useful assistance.

You did the right thing sourcing out a Dermatologist yourself, LS is a skin disease and many doctors and gynaecologists are not useful as a large majority know little about it, they are not doctors or specialists that have expertise in skin diseases.

I have the same symptoms and were picked up in early menopause phrase.  What you can expect is to be examined, Dermatologists are usually aware of what to look for with LS, is usually visible in white dots or larger patches.  It usually appears in the genetalia or anal areas.  Dermatologist will probably examine both areas.  If there is conflict in opinions from one specialist to another, you can gain 100% confirmation by having a biopsy, I have had one front and rear, abit frightening but no need to worry that much about it as they only take such a small scraping of skin you can't even see where they've taken it and they give you some local anaesthetic to numb any pain, its quite quick, with perhaps a small bit of blood like from a scratch afterwards, relief is experienced after its done.

I was prescribed Vagifem for recurring soreness, I have had great success with it. Vagifem has been known to be very safe, I've not had any issues whatsoever with it and use it twice a week usually a Tuesday and Friday night before bed, put a very thin smear of olive oil on the applicator if your extremely dry and have trouble inserting it, helps, don't usually any lubricants like KY or anything else that may have irritants, the less irritants you have the better, or just insert it without.

I recommend that you find out as much as possible on the medications you've been given, there is much resource on them online.  Be very cautious with steroid creams and ointments should be very very thin when applying, clob will thin the skin so you need to be extremely careful with any cream or ointment they give you but if you don't have a clear diagnosis I would be inclined to wait until you perhaps get a biopsy.

You may for a little while have a stinging or irritating sensation from Clob, I am on Diprosone OV Ointment and when I first started using that, I had abit of irritation but know that it passes after a few days, things settle down.  Atleast give it a week before you go back to your doctor to report any irritations.

Questions you need to ask would be -

1.  Is LS visible front and back?

2.  If visible, please could you show me with a mirror so that I know where to apply the cream/ointment.

3. How much is a biopsy?

4. Do you have many patients that you are treating for LS? If not can you refer me to a LS Specialist?

5. What has been the most successful treatments LS sufferers have reported?

6. How many times a week do I need to use treatment, how often should I come back to see you?

7. Has there been any new developments with LS treatments?

8. What can I expect from the treatment?  What should I look out for?

9. Is there a specific list of foods I should stay away from with LS?

You might like to find out if there is a female LS Specialist rather than a male and for the interim you might like to have regular weekly visits until your comfortable doing what you need to do.

LS is an auto-immune disease which may or may not open the opportunity up for other susceptability of other auto-immune conditions/diseases etc.

I get regular blood tests done and vaginal swabs so that specialist can keep an eye on things and check that there is nothing else going on.

Vula and Vulvadynia Clinics are a great place also to see someone, specialists in these areas for women.  You may find them online as GPs, Gynos don't advertise them nor tell you about them, nor do Dermatologists as they all want your business and your money.

LS is a long term condition which needs correct and ongoing management.  Failure to manage this condition/disease on an ongoing basis as directed, may result in cancer cells/growths growing eg. squamous cell carcinomas.

If and when you get confirmed, check out the 'Lichen Scerosis Yahoo' group online, the largest group worldwide (supposedly).

Hope info is of help and good luck.

6

Thank you all who replied to my question about what to expect at my dermatology appointment. What puzzles me is why there cannot be a conclusive confirmation of LS after a biopsy has been done. Some site users say it is the only way to get a confirmation, in other blogs this is not the case. I was discharged from the gynae specialist who I found unhelpful and wrote me off when I said it was not having too much of an impact on the relationship with my hubby, (even though I did say I was avoiding sex due to problems down below). I mentioned LS when he examined me and he said I had not got it. Then when I went back for a follow up appointment he just asked me how I was getting on with the vagifem and I told him slight improvement but I had asked to be referred to a dermatologist regarding LS. He seemed angry that I had questioned his judgement said I was wasting my time going to the appointment and discharged me. He did not examine me again, I must admit I am feeling depressed about the whole thing. This has been going on for about two years now off and on. I am trying not to get stressed as I know I will get a sore anal area.. Spindles like you I don't get itching. And I use a hydrocortisone cream I can buy from the pharmacy which clears a flare up. Sometimes I have to eat something sweet like a biscuit. I have a very active life as I am a fitness instructor so I eat and drink all the correct things, have given up bread (and lost weight when I did, but am slim anyway,) so I know now I must have a gluten intolerance, very little alcohol, (Christmas an exception) and decaffeinated and green teas. Because of an active lifestyle I occcasionally have to have something sweet to keep up blood sugar. Gone off bananas they bloat me and used to give me the sugar I needed. I have not got a sweet tooth so I am lucky there. Sarah thanks for your long reply and that is a very good point you brought up about telling me to ask them where to apply the ointment using a mirror. Sorry if I am rambling a bit it is just my head is all over the place at the moment, but everyone's helpful reply has prepare me for the visit on Tuesday. Thank you all so much. I will post how I got on. I have had a boit of trouble logging on lately I keep getting thrown out when I put my details in and my password is correct so not sure what is happening. Thank once agin I will be in touch.

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Best of luck to you, I am sure you will be fine!   I think all the uncertainty and lack of clear diagnosis is probably making you feel stressed, so a firm diagnosis should help..I am Gluten free too and diary free also, I just wanted to mention that as sometimes people that are Gluten intolerant can have problems with diary too, and I recently inadvertently ate something with dairy in and it shocked me how unwell I felt, of course I knew I was lactose intolerant but I don't think I realized to what extent...so maybe cut out the diary for a couple of weeks and see what happens.  Do let us know how you get on.

I should add  that I dont think most people with L.S have a problem with Gluten or Dairy, but for those that do have a problem I think it can be quite detrimental to them with L.S.

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For some reason I cant spell dairy, sometimes I spell diary lol!

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Hi carmarie. I had the same symptoms as your experiencing plus had lost pigment from vulva area. I was referred by doctor to see a gynea. I saw her alongside a skin dermatologist. He said it looked like LS, but to confirm I would need a biopsy which, I had a couple weeks later. It wasn't painful just uncomfortable. When I returned for followup, I was diagnosed with LS. It has been a long road but, with the help of dermatologist things are improving.

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Carmarie,

The process of getting accurate diagnosis from specialists is very frustrating and depressing, you are not alone there but know that there are real experts and specialists out there that you seemingly just haven't met yet.  Your gyno appears very unprofessional, he wants your business and your questioning him receiving an angry response in return, well done, move on from this one, there are some that just don't appreciate or like to be interrogated over the information they provide - bad luck, it is your right to ask what you want and they should be reminded that you are paying there fees.

I have advised that 100% confirmation is by biopsy, that is what all specialists have advised me here in Australia.  They take a scraping of the skin and view it under a microscope for the disease.  Even very early stages of LS can be picked up.  LS because of its appearance can also be picked up by visual examination only, you should always get 2-3 different opinions.

Anal itching and soreness particularly after a bowel movement maybe haemorroids, have you been checked?  You may or may not need a script but PROCTOSEDYL is fast and soothing for anal itch and soreness, I swear by it as I get soreness there all the time and Proctosedyl is heaven.  It is an ointment usually in a 30g tube that glides on easily and your meant to use it after every bowel motion until symptoms stop or settle down.  I use non-irritant wet wipes to cleanse properly before using the Proctosedyl so the area is always clean.

Don't let your gyno get your down his just trying to intimidate you which you don't need.  I highly recommend that you go to someone that will make you feel better, we as women don't need people at appointments to make us feel worse than we already do.  Appointments should not be negative from your health professional and you should always leave feeling positive not down and out...highly recommend you see a skin dermatologist for LS and perhaps a female gyno for any other ongoing women's health problems.

Look after yourself.

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Hello carmarie

Sorry you've joined us in the discomfort department, whatever your diagnosis turns out to be. I just wanted to say that I've also had bad experiences with male Gynaes. You are within your rights to ask for someone else. They should ask when you turn up if you are comfortable seeing a male doctor and then you can just say 'no' without having to say you don't like that particular one. Good luck.

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Hi Everyone

Just to let you all know that my dermatology appointment  went well. It was a lady dermatologist who was very matter of fact and down to earth. She asked me quite a few relevant questions, examined me front and back, and said that there were no white spots or evidence of lichen sclerosis. She said I had frictional dermatitis which was causing the redness and soreness and gave me a prescription for hydromol. I am so relieved, and would just like to say thank you to all who replied to my anxious post. And for you who have got it to keep fighting. I think it would be a good idea to set up local self help groups for LS putting ads up in doctor's surgeries. I am so annoyed at my own doctor for the misdiagnosis and the impact it has had on my marriage. But pleased I insisted on seeing a specialist. Best wishes everyone, keep posting in the forum, it meant a lot to me, you guys were there when I needed you, there are many others out there who are frightened and alone. The help and advice you are meting out is priceless.

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What a relief!  I am pleased to hear such good news..

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Thanks Guppy. That stuff is like a big pot of Vaseline lol. Think I could lubricate the car engine with it. Let's hope it does the trick! Can't believe it has taken about two years to diagnose something so simple. Also glad I stopped using the Clob as it isn't any use for my condition. No wonder people don't trust doctors. Hope I'm sorted now. Anyone else want a bit of greasing Hydromol seems to be the one to use as starts out like vaseline but when wet gives a lather abd can be used in the bath. No additives fragrance or anything else to irritate in it so should be ok for me. Thanks again Guppy.

 

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Hi Carmarie,

Thats great news.  Frictional dermatitis was suspected with me also although biopsy confirmed early stages of LS but since treatment, active LS can no longer be seen.

Lets us know how you get on with the dermatitis and treatment. Fantastic.

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I'm afraid I am in the bracket of not trusting doctors...I used to, In fact I believed everything they told me, and then I got real sick through their negligence in part, and I woke up!!! 

What I have realized is that when you are sick you need to do your own research, learn as much as you can, become informed, and make decisions with your doctor, together! 

Do not blindly trust doctors, they are human and make mistakes, and some doctors are just not very good at what they do, often not wanting to be challenged, or even worst are lazy....

 

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AMEN !   I don't trust doctors anytime.  There negligence and continual misdiagnosis also cost me too.

AMEN - you do need to do your own research and thats how I was diganosed because I did lots of research after getting sick and tired of wasting my money at specialist appointments that went nowhere.  I found a place called Vulva / Vulvadynia Clinics that specialise in womens health issues. 10 min examination BINGO.

Another lesson to learn here if you get regular full blood count tests ask to fill in an authority form so you can receive a copy of the blood test results also or ask your GP for a printoff.  Doing this allows me to keep tabs on what the normal ranges are for each test and which ones are outside of the normal range compared to the previous blood test.

I also ask my GP to throw in some extra blood tests if I feel something else should be checked, I dont just rely on there standard blood test referrals.

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Hi Sarah.. this is a great information.. I see tha you are using a Diprosone, which is a grade III steroid.. Were you never on clobetasol?  I am wondering of asking my GYN to lower the strenght of my steroid