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.
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.
In Uk dermats offer the best visual differential diagnosis
xx
Carmarie, if you have the choice of going to a vulvar clinic, that's ideal. Where I live dermatologists are scarce as hen's teeth and the vulvar clinic is two hours away. My gyno's practice serves a large mostly rural area and she has 1000 LS patients. She disgnosed my bad LS flare on sight and prescribed Clobetasol. I go to her colposcopy clinic once a year to make sure there are no pre-cancerous bits and I see her at the other six-month mark for a check. I feel I'm in good hands.
Dermatologists know more about skin, but unless you specifically ask to have your vulva examined you won't get an LS diagnosis because most don't have stirrups and most don't ask you to remove your panties. I've had LS for 40 years and have seen many derms for my psoriasis, but they never even asked about my genital area. They told me not to use the steroid creams around my eyes or in the genital area.
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.
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.
Thank you I will try the vulva clinic and they can look at both ends. If I went to a dermatologist think ke/she would only look at the anal area. Thanks everyone who replied.
Hi Carmarie,
A Dermatologist would likely know that LS affects the genatalia and perineum areas, if you mention LS they should examine you in both areas, if they don't, you need to just prompt them about it.
Thanks Sarah. I am in Uk I think the department I am being sent to will look at both, but I will prompt them. Can't get an appointment until January. Shocking.
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.
Hi carmarie I had to read the name on the post twice as I am exactly in the same place as you. I was told I had LS after a colonoscopy under general anethsetic by a Uroligist for recurrent uti. He did not speak or see me personally afterwards, just put notes on a file for the nurse to tell me post op. I made an appontment with a gyny who runs a vulva clinic and he initially said I had atrophy and said it did not look like LS to him but as I had a pale area around the ureathra Not white! I was red and sore around the opening and had a skin bridge across the bottom of the opening. He gave me vagifem, and told me to use the Dermovate for 3 mths on the pale area around the ureathra . I was not having any symtoms of LS. I last saw him in June and he says to carry on with the Vagifem and use the Dermovate as and when I get a flare up. I have not had a biopsy he said if there was anything that look suspect he would then do one.. Since seeing him I have had stinging and redness around my anus and in the cheeks of my bottom, and like you it is worse when moist and sweaty, I do not know if this is a flre up as I don't have any white patches, itching, swelling, or tears. Just goes red when I get hot down there. i have been treating this since June with Dermovate , until 2weeks ago I decided it is not working and used fungal cream canastan and it has made such a difference, the constant irritation has gone, the only time it goes red is if I get hot, so I am also not 100 % sure I am dealing with LS. I was told not to have a biopsy if I did not need to. So confused!
Rosaleee, I think LS and yeast kind of do a dance with each other. Sure sounds like it was yeast you were suffering from recently. Glad the canestan worked. I had a bout a couple of months ago and got the slower canestan – the three day stuff is way too harsh with LS.
Thanks Sarah. Falling asleep now but will return a message tomorrow.
Wilma.
Hi Roselee.
Your symptoms sound exactly the same as mine, I do not have any cracking or itching or anything like that either, just the bridge that you describe. Steroid cream did not help, but antifungal does which I use from time to time. Sometimes I use a bit of hydrocortisone as well. My appointment with the vulval dermatologist is not until January, so I will Post the result of the tests online.
I think a vulva dermatologist sound the correct way to go, I am going to look for one, in my area. Morrell yes it does seem that it was a fungal infection, funny thing is though I have never suffered with thrush, but do get sore in my bottom, or around the groin when hot down there. Thing is I had been using Dermovate foe 3 mths to try to settle this down and it sounds like it was fungal, I feel I used clob when I didn't need to , this is where I feel I need to find out for sure what is going on for sure, as the clob has thinned my vulva and it may have been unessessary. I don't want to have to have a biopsy for the sake of it but I will see what happens but may have to in the end.
Certainly you need a firm diagnosis of LS before using clob. I wonder, have I mentioned how quitting coffee cleared up the sore red area around my anus? Really fast, too. Coffee relaxed my bowels too much, so I was having urgent loose BMs every morning, sometimes all day. Yes, there were a few withdrawal headaches, but I'm just fine without coffee now. Not tempted at all.
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.
Hi Roselee
Have you or your GP considered that you might have a bout of Tinea Cruris? This is fungal infection of the groin. It can affect the natal cleft between your buttocks and around your anus. It can also affect the creases between your mons publis and your thighs. It can also gain a hold if you have a large belly in the crease underneath it but above the mons pubis. I have had this recently, following use of Clobetasol. It started with lots of red spots and rash which was initially treated with an antibiotic cream (Fucibet) and antibiotics by mouth. Unfortunately, this left me open to the fungal infection by Tinea Cruris, which was quite agressive leading to bleeding patches and such soreness that sitting for more than a few minutes was difficult. This was treated with Daktacort cream, which is a strong antifungal along with hydrocortisone and also antifungals by mouth (I can't remember their name). This cleared everything up like magic within a couple of days I was free of discomfort.
So another of your correspondents, who said that all these treatments are a balancing act, has it spot on. Too much of one thing lays you open to another. So we each have to learn our own management regime - and also acknowledge that our own regime will probably change over the years.
All the best.
Thank you so much for that information tomsbestfriend that is very interesting, I have never heard of it before and sounds quite possible, I will make an appointment to see my go, as I have been trying to combat this by myself, I had a soreness around the groin area last year and my GP gave me a fungal cream as he said if it was in the creases of your joints it was fungal, that did sort it then, this is in the cheeks of my bottom ang just underneath my vulvar and at the bottom of my groin, thank you for your reply.
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.