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.
1 like, 31 replies
sarah33278 carmarie
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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.
wilmatm sarah33278
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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.
carmarie sarah33278
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sarah33278 wilmatm
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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.
wilmatm sarah33278
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Wilma.
wilmatm sarah33278
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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.
sarah33278 wilmatm
Posted
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.
wilmatm sarah33278
Posted
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
Morrell1951 wilmatm
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wilmatm Morrell1951
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Morrell1951 wilmatm
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We're really covering so many variables here.
tomsbestfriend wilmatm
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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.
wilmatm tomsbestfriend
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Wilma
tomsbestfriend wilmatm
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carmarie tomsbestfriend
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tomsbestfriend carmarie
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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.
wilmatm tomsbestfriend
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Morrell1951 wilmatm
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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...
wilmatm Morrell1951
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