1. Community
  2. Women's health
  3. Lichen Sclerosus

Newly diagnosed-Vancouver, BC seeking local resources

Posted , 9 users are following.

ElleF
ElleF

I'm newly diagnosed with lichens sclerosus, living in Vancouver Canada and I don't have a gynecologist yet. My GP got me an appointment a year from now at the vulvar clinic. I managed to get myself an appointment with a gynecologist 6 months from now. My issue is that I'm not completely convinced that I have lichens sclerosus, or only lichens sclerosus and really want to see a gynecologist as soon as possible as I'm quite anxious.

Before I was diagnosed (visually) by my GP (no biopsy) I had wanted to switch to another doctor but due to the severe shortage of doctors in this city I couldn't find someone. Now, I truly must leave this doctor. She is out of her depth here. She initially told me to stop using the mometesone creme she prescribed after a few weeks when the itching stopped. The itching wasn't very severe and it stopped within a few weeks.  I initially stopped with the creme until I researched lichens slcerosus and found this forum. I am now adhering to Dr. Goldstein's protocol. I had an appointment yesterday in which she told me not to worry about the red spots that have started to show up saying they aren't related to lichens sclerosus and they are nothing to worry about. I want to know what they are! There are other things she has said regarding her treatment of this and other conditions that do not instill much faith in the care I am getting from her. My itching sounds nothing like what many of you have. Mine was an annoyance which is how I ended up ignoring it for so long which resulted in a lot of changes in appearance. As I said above, I'm not 100% convinced that I have lichens sclerosus, or don't have another condition in conjunction. I suspect I have lichens planus of the mouth and nails and have told my doctor this. The red spots showed up on my labia about 10 days ago and at the rate they are growing I will probably be 50% red and 50% 'normal' if I have to wait 6 months to see a gynecologist.

Anyone in Vancouver have any suggestions about where to turn for better care through a gynecologist and/or a GP?

0 likes, 11 replies

11 Replies

  • patricia86334
    patricia86334 ElleF

    Posted

    hello....I am sorry you are having so much anxiety and stress trying to get an appointment with the dr.  I don't know if this will help you, but this is what I did when I was told it would be months before I could get an appt. at a vulvar clinic.  (I am in the US)...I went to my regular ob/gyn who was already treating my LS, I signed a form alllowing  her office to fax my records to the vulvar clinic.  I had my regular dr. write URGENT across the fax cover page.  The vulvar clinic called me right away and made an appt for me within the week.  Actually, the dr. I wanted to see at the clinic had a cancellation the next day and called me first thing in the morning and I drove to her office that same day.  I am glad I pushed for an appointment.  I don't think it would be so bad if you kept pushing for an appointment.  Keep calling the office, get  your records faxed to the clinic  you want to go to...be a pest if  you have to.  Well, it worked for me, I hope it will work for  you.  cheesygrin
  • Guppy007
    Guppy007 ElleF

    Posted

    Ellie, I hope you can find someone quickly.  

    People that have Lichen Schlerosus sometimes have oral lichen planus, unfortunately the two often seem to go hand in hand.  

    The symptoms of Lichen Schlerosus are....

    Tiny paper cuts in and around the crack of your bottom, or in and around the Vagina.

    A white lacy coating on and around the Vagina, sometimes reaching the anus.

    A red spotty lumpy rash that often presents itself around the vagina and up into the crack of your bottom.

    Itching, often felt deep within the Vagina.

    Painful intercourse

    Painful sores or sore areas, on and around the Vagina.

    Not everyone has all of the above, some women are fortunate to only have a couple of the above mentioned symptoms at any one time.  A specialist that is experienced with this condition should be able to give you a diagnosis quite quickly.

    I was given a visual diagnosis, as my  doctor felt a biopsy was not necessary due to the white lacy patches on my Vagina, which is Classic Lichen Schlerosus!, and the fact that I also have Oral Lichen Planus.   

    It is felt by some doctors that a biopsy can sometimes aggravate the whole area, making things sore and ultimately worst, and so it is not always necessary for some woman.

  • suedm
    suedm ElleF

    Posted

    Hi Elle, I am glad you found the site but sad yet another poor girl has this b*****condition. I had The Itch for serveral weeks if not months, was treated for thrush topically and then  orally to no avail. Had a smear and said I was unhappy withthe appearance of the undercarriage- it looked as if the labia had stick to the sides. Everything was red and swollen cos of The Itch. then referred to gynae who looked and diagnosed given Clobetasol (Dermovate) seen for a couple of years every 6 months - now i have no one! The fusing is progressing as i write

    I dont have white patches nor paper cuts- sometimes with penetration I do have a small tear which heals within a day or so. Someone on this site said she was now   very neat and tidy - me too

    I am trying to keep the clitoris from being buried - by pulling back the skin in the bath - so far it is just about working 

    I will have a flare up when I am stressed- the latest news in the UK about cashing in pensions of former spouses is of great concern to me and The Itch is back! I havent found diet makes much difference to me but I dont have a very sweet tooth - except for red wine and fruit - I tend to buy organic and prepare and cook my own meals. I slap on the barrier to keep the body fluids off the skin, and dance discretely when I am out and about and cant have a gentle "scratch"

    In health  probably internationally but certainly in hte UK she who shouts the loudest gets the treatment - so start shouting!

    Good luck Sue

  • ElleF
    ElleF

    Posted

    Thank you to everyone who responded. I have found someone who can help me. She's explained my situation, and we've developed a short term plan while I wait a few weeks to get into a gynecologist. Now to reduce the stress in my life!
  • Lucban
    Lucban ElleF

    Posted

    Elle it sounds like you have found a good Doc. I too am in Vancouver and can recommend a Vulvar Specialist and share lot's with you if you are interested but it sounds like you are good to go now. There are a couple of really great facebook groups too that are a wealth of infomation. Take care and know you aren't alone! My emailis __________ if you needed an ear / advice. 

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • Lucban
    Lucban ElleF

    Posted

    Hi Elle,

    I too am in Vancouver and I have a few great resources in the city for Ls but it sounds like you have found a Doc thankfully! Best of luck to you and to everyone else in this thread! Keep in mind there is also a really great Facebook Support  group  for this ailment that is a very valuable resource. Take care and remember that you are not alone! 

    • shannon11685
      shannon11685 Lucban

      Posted

      Hi Lucban

      I have been diagnosed visually and have a referral to a gynocologist. I would love to hear who you are using as the gyno I looked up doesn't even show LS as a specialty, I have also joined the facebook group. Would appreciate any advice you have

    • ElleF
      ElleF shannon11685

      Posted

      Hi Shannon, 

      Don't worry if LS isn't listed as a specialty for a gynecologist. Those who really specialize in LS in Vancouver work at the Vulvar Clinic at VGH. It's much faster to get into a regular gynecologist who can assess if you are an urgent case and put an urgent referral into the Clinic than to wait for the referral to the Vulvar Clinic as your first appointment. 

      I suggest that you take your health care into your hands. By that I mean learn about LS, ask questions and be proactive. This forum was a great resource to me. Before your appointment write down all your questions and take them with you. Many doctors will only respond to what is directly in front of them and aren't good at giving additional resources. Ask for a referral to the Vulvar Clinic. It's a long wait to get in there if you aren't urgent but they are good. You could also see a dermatologist for the condition. I saw a gyne and derm at the same time when I was first diagnosed and waiting to get into the Vulvar Clinic as the first gynecologist I went to wasn't a good fit for me and I felt I was getting better care from the dermatologist. My anus is affected and I find the gynecologists not terribly helpful but the dermatologists consider all the areas. I also felt better having two sets of eyes helping through it. 

      If you don't like the care you are getting from a doctor, try another. It's a condition that isn't going to go away and so you will want to have someone that is a good fit. 

    • beverley40209
      beverley40209 ElleF

      Edited

      Hi there. I too have been diagnosed with this ugly nasty disease. Am on Clobetasol, seemed fine so started just using Vitamin E lotion etc. for a few weeks but back on Clobetasol every day now. I was diagnosed in July so this is all very new to me and terrifying. Any help re info Vulvar Clinic or other people/things to try would be most helpful. You've mentioned a facebook group? I'll take anything I can get right now as started to fuse as well. Thanks beverley40209

  • Guest
    Guest ElleF

    Posted

    I am in the USA but can relate. The first gyn I went to said I had fungal and gave me cream for that.It did not help and rednes s continued and then white patches. He did not do biopsy for almost three months and then said it is lichen and just use clobetasol 2x a day for 2 weeks and then only if symptoms appear. I has a friend who is nurse practice right and she told me to go see a vulvar specialist which I did. Thanks to her I have been able to control lichen for last 3 years using clobetasol,which I now use once a week. Will have to use it probably forever but if it helps control lichen I am ok with that. I would recommend that if you have vulvar specialists in Canada, to go that route.
  • sas2008
    sas2008 ElleF

    Posted

    I have found only one solution for vulval LS. It does not cure the condition or reverse the damage. But it makes the symptoms possible to live with -- in fact, with routine use, I am not particularly aware of my LS any longer, in day-to-day life. I use a topical cream 3X daily, morning, noon and night. This has no cortisone in it, so no medical doctor will advise it. I learned about it from a naturopath who had used it successfully for ... diaper rash! The stuff is a homeopathic ointment (yes, I know! I don't understand or particularly believe in homeopathy, either). It is called UNDA 270 ointment, manufactured by a company called Seroyal in Belgium, distributed in Canada by Seroyal International in Richmond Hill, Ontario. I could order the ointment online but prefer to get it through the same naturopath who first suggested it, even though I have not returned to her for any further treatment. One 40g tube lasts a few weeks and I pay  $17 per tube, plus tax. I have used this ointment for 10 years now. As I recall, the effect wasn't immediate, it took a few weeks for me to notice an easing of the burning discomfort (I had more of that than of itching). But the reason I kept using it was that I'd tried many, many topical preparations and all of them made the skin feel worse when I put them on. This stuff seemed from the beginning more or less inert. So: why not try, I thought; absolutely nothing else had worked. The cortisone stuff numbed the area but made the skin thinner and dryer in the end. Now, the UNDA 270 ointment has not restored me to an active sex life and has not taken away the skin bleaching, shrinking of tissue, etc. Probably the condition continues to advance, but much more slowly and with remarkably little distress. I can now live a fairly normal life, thanks to this strange little tube of goo.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.