Dermatologist or Vulval Clinic referral

Posted , 5 users are following.

I have problems with soreness around the anus, especially where moisture such as sweat occurs, and also have vaginal atrophy due to menopause and am on vagifem for this which I think has started to work. My dilemma is I have not had a proper diagnosis regarding Lischen Sclerosis as one doc said I have it other said unlikely and gynae said I don't have it. In a nutshell I have the choice of seeing a dermatologist, or being referred to a vulval clinic, (there was redness and burning during sex around that area). I need to be pointed in the right direction, as I need my anus and also vulva looking at. Would a vulval clinic do both and also check for LS or would I be better seeing a dermatologist? Any experiences of patients would be great as I need to go on the choose and book system to book an appointment. Thank you.

 

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  • Posted

    Dear Carmarie,

    Looks as though you and I have same or similar problems, I'm in Australia. Been in menopause for approx 2 yrs and the Vagifem has been magic, no more soreness, for once feels normal. Inserting 1 pessaries twice a week usually a Tuesday and Friday evening before bed. I've had real success with Vagifem.

    The LS I went to same gyno for approx 20 yrs because of so many gyno probs which seemed to escalate every time he delivered my children, he delivered all 3.  I last saw him April this year complaining same problems. He did Pap smear and examination, everything normal he said. That was the last time I saw him and decided enough was enough of going to gyno's.  in the 20 yrs of seeing gyno's and doctors for same symptons not once did anyone advise to me the existence of Vulva or Vulvadynia Clinics, I started to search symptoms online and found them. I contacted one made an appointment and on a 10 min examination she advised LS front and rear. She prescribed Diprosone OV Ointment and Dermeze moisturiser over the top. The Diprosone from memory was used at the beginning very aggressively I think was twice a day every day and then later changed to every 2nd day morning and night than twice a week in th evenings followed by the Dermeze moisturiser over the top.

    I did follow up with this verbal diagnosis with a Dermatologist who did front and back biopsy, I was a nervous wreck that day. Results came back positive for both areas.  I since changed to another doctor who has specialist training in vulva and LS as other lady was too far away and Dermatologist who was a male didn't seem that knowledgeable of LS so found his lovely lady who zi am really happy with. I've Ben seeing her weekly. The results from the Diprosone OV Ointment has been really successful. For weeks have had no itching, soreness or any signs of LS and because of his, this doctor is now querying whether LS was there or whether it was a dermatitis condition of the skin as she never saw symptoms from the very start. But biopsy confirmed so am continuing with treatment and are booked in to see one of our top Dermatologist a lady next month for a more thorough examination and discussion.  Don't listen to gyno's they have little or no knowledge on LS, this is a skin disease and needs to be treated by either a Dermatologist or someone who specialises in LS at a Vulva Clinic.  Give sex. Rest if you can is the last thing on my mind, have an understanding partner.  I know biopsy is scary but if you want 100% confirmation for front and rear, biopsy will give this. It's not that bad they only cut a very small scraping of skin from both areas and they do give you anaesthetic unfortunately by needle which is unpleasant but is like at dentist needle is horrible but once that's over, it's all pain free.  There is a little bit of bleeding but doesn't last long.

    Ensure whoever you see is very familiar with LS and it's treatment, it's also there job to show you with a mirror where to apply any ointments, it's pointless applying to areas that are not affected by LS, they need to show you where it is.  Steroid ointments are first line approach but they must be used thinly. Usually commencement of treatment is ver aggressive to quickly get it under control.  Treatment is lifelong.  Poor management of LS can result in vulva cancer and squamous cell carcinoma cancers. You need to treat yourself religiously always, have regular reviews and examinations at commencement until things get under control.

    Moisturisers to use - Dermeze or Emu oil.  DO NOT use normal fragrance soaps but rather use products like Cephaphil or Dermaveen non soap products on your skin.  I now use non soap products on everything including shampoo and Conditioner for hair, no itchiness, healthier skin and hair.

    Hope information is of help. Also helps if you can afford private health insurance.

    Good luck.

    • Posted

      Hi Sarah. Was wondering what state you are in and how you found the vulval clinic and specialist for LS?  I live in NSW far nw. 

      I have friends and family in Vic. Can travel to see specialist if i could find one. 

      Any info would be a help. 

      Thanks. 

      Wilma. 

    • Posted

      Thank you for your reply Sarah. Never thought about soap free hair products though I don't use soap for anything else. Thanks for all the useful info.
    • Posted

      Hi Wilmatm,

      I am in Victoria.  There is a state by state listing of Vulva Clinics in Australia.  You can search online for ANZ Vulvovaginal Society or link is - http://anzvs.org/vulval-clinics/#nsw   for NSW, copy and paste link into your browser.

      When I was searching I used a few key words online like - Vulva Clinics or Vulvodynia Clinics.  After getting nowhere for so long with gyno's I decided to search on symptoms myself online.  I found these clinics who specialise in disorders of the vulva, womens health problems and sexual dysfunction etc, didn't even know they existed.  They are not really advertised through GP Clinics and gynos don't inform you generally as they want your business.  But they are specially trained to recognised skin disorders also where many gynaecologists are not trained to generally look at the skin, my gyno didn't even pick it up.  I did call him to ask how he could of possibly missed it, all he said was he saw no signs of it on examination and said that was wonderful news because now I have a diagnosis.  Felt like saying it is good news because I will be moving on to someone with more specialist knowledge.

      Hope you locate one easily from list, let me know if you have any more questions.  LS requires prompt aggressive treatment.  I have had good success with Diprosone OV Ointment, it must be the ointment not the cream.  Treatment is life long, once disease is under control things get easier.  LS can appear in both genetalia and perineum.  Usually treated by Dermatologists also as it is a skin disease.  Confirmed visually but often 100% confirmation is by biopsy in both areas, I had 2. 

      Let me know if you need more help.  There are many support groups for LS online.  There is also Lichen Planus which is similar but more serious.

      Good luck.

    • Posted

      Thanks Sarah. Falling asleep now but will return a message tomorrow. 

      Wilma. 

    • Posted

      Hi Sarah Thaks so much for that info and links. Had Dr appointment with the flying Dr womens Health Dr yesterday and got the ointment ordered but its not available till next tuesday from here. Our chemist wont carry many lines and we nearly always need to order in. She wont even stock the meds i use for my liver disease and at times i have had to wait up to a month. I have learnt to stay a few months ahead for my medications now so i am not left high and dry.

      Can i ask what area of Vic you are from? was born in Gippsland myself and lived mostly in East Gippsland. Most of my family which is huge still lives there.

      Do you know if any one or any group has Lobbied the Minister of health in reference to the cost of the Diprosone Oint? I think i have payed over $3oo.oo this month in scripts for down below and still i have yet not got the right one. Its a hefty price to pay esp when on a disability pension.

      Any way great to meet another Ausie here.

      Thanks

      Wilma.

    • Posted

      Hi Wilma

      Are in Werribee, VIC.   Yes the cost for treatments does add up. I pay around $30.00 for the Diprosone OV Ointment which lasts awhile.  I purchase Dermeze moisturiser, Dermaveen non soap products and Vagifem from places like Chemist Warehouse or online pharmacies where it's cheaper.

      I don't know of any lobby groups that have discussed with Minister of Health but it's not a bad idea.

      The thing with treatment of this annoying disease is good skin care and consistency as well as the right treatment.  Any steroid ointments need to be used sparingly as they do thin the skin.

      If you are on disability you should have health care card on one of these is usually $5.00 for each prescription but maybe talk to Centrelink and explain situation regarding expenses and see what else you can claim.

    • Posted

      Hi Sarah. I pay $43.80 for diprosone OV Ointment 0.05% 30g

      My Dr has told me this is the only one i should use. She also said once its under control i could use a cheeper ountment. 

      I used to live in the Western Suburbs about 35+ years ago. I hear its very built up there now. 

      I had been using the dermaveen wash but it hurt so i have gone back to pears clear soap which i have used for many years to sooth irritation down below. I think i have had this since my twinties as i have always had an irritation to perfumed products down below. The soap has some coal tar in it which i find heals and soothes. 

      Any way thanks for yor reply. 

      Wilma

    • Posted

      Really, Wilma, you use soap down there? Have you tried using plain water for awhile to see if things improve? I've done so many things differently in the year or so since my diagnosis I can't say for sure which are sure-fire. But nothing would make me use soap there again.
    • Posted

      Not ever suggesting any one use soap but where i live its very hot and sweaty daily. I feel the greasy stuff for me needs to come off once a day before i start layering. Its only been about a week now that i have gone back to it and for me it may be psychological but i swear its is soothing. I just put some of the suds on my hands and wash that way never direct contact. This week i can honestly say its the best my skin has been in 6 weeks. Hmm i guess we all have little oddities about us. Was using the aqueous cream every time i went to toilet so felt one clean wash a day was fine. Put my prescribed ointments on straight after. 
    • Posted

      I can sure sympathize with the sweat situation, given the heat there!

      We're really covering so many variables here.

    • Posted

      Hi Wilma

      For a time I used Clinique facial wash. It isn't soap based or perfumed. It was good to feel clean with it. It is pricey but you don't need much.

    • Posted

      Thanks Tomsbest friend. Sometimes i think its best to stick to what i can get locally. Did you use this product down below?  I think the reason the pears works is because of the coaltar which is soothing for an itch. Its what i always used till this out break. Tomorrow i have to go to our local city 4 hours drive for a colonoscopy. I am pretty stressed and of course today i have a new out break so back to the aquaeous cream any way. 

      Wilma

    • Posted

      I've also used coal tar soap at times (We get Wright's in UK). It keeps any minor infections at bay, but I rinse off pretty quickly.
    • Posted

      Hiya tomsbestfriend. Don't you find the soap a bit drying? and has Wright's got any perfume additives?
    • Posted

      Hi

      Yes it is a bit harsh. But it feels clean. It just smells of coal tar. I use either Sudakrem or baby's coconut nappy oil afterwards to counteract.

    • Posted

      Yes i find the coal tar element of my soap soothing too and i keep a bottle of coal tar in my shower for when i get really sweaty and itchy. Best thing to settle it down for me. 
    • Posted

      I used to use coal tar shampoo for psoriasis back in the seventies. For many years I vaguley believed it was carcinogenic. I looked this up just now. Papers published in 1995 and 2007 both siad not enough studies had been done to be sure. Then I found a 2010 paper that said (quite reassuringly):

      There has been concern expressed over potential carcinogenicity of the application of tar based products based on experimental animal studies. Coal tar products containing coal tar above a concentration of 5% are listed by the World Health Organisation as carcinogenic. Reviews of the literature have however been unable to uncover evidence of increase risk of cancer in those treated with medical formulations of coal tar. Studies of patients receiving long term treatment with coal tar have also not found evidence of an increased risk of cancer. A recent in depth analysis of patients receiving tar based anti-psoriasis treatment compared with alternative medications found no evidence of an increased risk of skin cancer associated with tar. Specifically the median exposure to coal tar ointments was 6 months (range 1–300 months). Coal tar did not increase the risk of non - skin malignancies (hazard ratio (HR) 0.92; 95% confidence interval (CI) 0.78 – 1.09), or the risk of skin cancer (HR 1.09; 95% CI 0.69 – 1.72).

      I'm glad you mentioned this, Wilma. I'm going to go back to coal tar shampoo for my scalp plaques, which are nothing compared with my sister's, but having them probably affects the LS – Koebner phenomenon...

    • Posted

      Hope you get some relief. I know i do. When i am in tears with pain and itching down there thats what i reach for. 

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