Well, here's a first. Went to my usual gynae check up at which I was asked how things were. Said I had flare ups from time to time but was using clob as directed, that I was part of this online forum and that I appreciated that there were lots of women worse of than me. The gynae said that he was going to discharge me from the clinic as they hadn't really anything more to offer me and that if I was worried about anything I could go back again. So, there we are. Nothing more to offer me. Straight to the point. Is my condition improving? No, I'm just living with it. It itches from time to time. I have adhesions from time to time. My clitoris is fusing over. My bladder problems are still there - which may be related. Is the medical profession doing any real research into this condition or is it not of enough interest?!
They signed me off at the hospital too, I now just visit my GP every 6 months for a check up, here's hoping our condition stays at a stable level.
Unfortunately while it seems this is becoming more common it still isn't common enough for anyone to do much research. I think there was someone that's done quite a bit but I can't remember his name. My doctors have only helped me manage and had no other solutions for me either.
I am in same position as you . I was discharged from gynaecologist after a biopsy confirmed LS. Told to just carry on with medication and to get my GP to do yearly check for changes etc. Went to my GP yesterday to be told that I do not need yearly checkouts and just to monitor myself.
Not much help and feel a bit let down. Like you wonder if there is not much interest or lack of knowledge. I don't think they realise the devastating effect it can have. I have had it for 18 years diagnosed at 42. Out of curiosity which country are you. I am in GB.
Same here Kathryn. Gynea was extremely abrupt and told me not to come back to him as it had nothing to do with him. According to him it is a dermatological problem and if the Derm wants to know something, she can phone him. I should not come to him and yet he charged me a hefty fee that day (probably to dissuade me from coming back again). Derm again states that she can only " go as far as the door, but cannot go in". So there we go..... catch 22 situation! I have not been back to either one of them since July and try to manage as best I can with the help of this forum. Far more beneficial, in my humble opinion! Keep up the good spirit ladies and don't let some of these practitioners get you down! Evenutally we will find something that works for us. Take care and all the best. xx
I'm just appalled. Of course you need ongoing support and monitoring. Keep trying to find someone who will give you this. If your gyno or GP can't suggest anyone try and see if there is a vulva specialist near you. Or maybe someone on here might have a suggestion for where you live. Good luck
I am in GB also , I agree not much info out there to explain what causes this condition, I have never suffered from any inflammatory skin conditions before in my life, (so why have I got it now) . Doctors dont know and can't explain why, my GP says it is a common complaint in older ladies so why have I never heard of it before? Maybe it's just never talked about because of the embarrassing nature of it .
Well, this discussion is right on the button with me today, as I spoke to a doctor and a gynaecologist while trying to deal with a severe allergic reaction to Clobetasol. The doctor, who didn't/couldn't help me and who frankly looked uncomfortable at the mention of LS and gave me antihistamines, answered my question re how many patients went through the clinic with LS with the answer probably many more than they ever know about. In other words I guess the patients present with something else and never tell about the embarrassing 'other thing'.
The GYN I spoke to by phone after she got my message re the reaction I was having and said oh dear! with no suggestions but told me not to bother taking the antihistamine as it only helps with itch (and I don't get itch). I told her I was going to see a vulval specialist dermatologist in another city as I had realized things weren't getting better and in fact were worse. She was delighted! She said oh yes, that's by far the best thing to do! Probably breathing a huge sigh of relief before she went back to her colposcopies (sp) and bladder prolapses. It's a days trip for Him and me sitting on my doughnut cushion, but am sure(hope) it will be worth the trip.
So yes, I got written off today too!
sorry this should have been reply to Kathryn but won't attempt to copy and paste or will probably lose the whole thing lol
I am really sorry you have been "written off" - I fear the same is about to happen to me. I live in Bermuda and have been seeing a great urologist at Johns Hopkins in Boston. I started seeing her because of recurring and resistant UTIs. so I am interested in your reference to your bladder infections - a coincidence? I also was a horseback rider - all of my life and two years ago I brought my own horse to Bermuda. After getting into a routine of daily riding, I started having the UTIs and then the LS developed. I stopped riding and eventually we got the UTIs under control but the LS developed and has been worsening at an alarming rate. Last week I had a biopsy done and yesterday I was very relieved to learn I do not have cancer. However, my urologist, rightfully so, has told me she no longer needs to see me as the UTIs are under control and is going to speak to two other (female, thankfully) specialists - vulvar and one other (dermatologist perhaps?) and get back to me. My fear is that they will deem LS incurable - somewhat manageable - and I too, will be written off. With that I will have no choice but to manage as best I can. I know now I have to give up my life-long passion of riding horses - heartbreaking as I have waited decades to reach a point where I could afford to return to the pastime I love best.
I know just how you all feel I have lichen planus and my doctor is the same I have been on anti depressants for 2 years now it drives me mad, it was actually my dentist that diagnosed it sent me for a biopsy in my mouth I have burning with spicy foods also problems at the other end, nobody wants to know, I am 57 went through the menopause early I had abnormal cells after a smear rest and colposcopy I am positive this is all related, anyone else had this x
Like Karen I have just been diagnosed with lichen planus. Sent to specialist by dentist and diagnosed last week. So problems both ends. When I told my doctor he was bit dismissive. Still coming to terms with that on top of LS. At least the consultant this time is keeping me on regular check ups. Wish was same for LS
Hi Kathryn - I don't believe much research is taking place at all on this condition - and have mixed feelings as an over-stretched NHS does have other research priorities. I have similar symptoms to you - and I'm still on 4-monthly appointments but suspect this won't be for much longer. How do the rest of the network feel about check-ups by the GP? Mine had examined me on a number of occasions before referral and totally missed the LS - whilst the gynaec spotted it straightaway?
Hi Leslie do you get the burning with spicy foods and how old are you just interested to know whether you had any abnormal cells after a cervical smear years ago I know what your going through just a nightmare Xx
Hi Karen. I had a lot of thrush infections and then abnormal cells when I had a D&C in my 30s. I had menopause mid 40s. I also have rheumatoid arthritis which is another illness that seems to link with LS as it is inflammatory. Diagnosed with LS at 42 but only given clob cream then.
I am 60 and before I was diagnosed with lichen planus I was having problems eating spicy and things like vinegar.
Not feeling very positive mainly as there is not a lot of help from
GB too. My gynae clinic has been very supportive up until now. The doctor even suggested that the dermatologist I am seeing re. LP in my finger and toenails might have some ideas!!
What treatment did you have leslie for the abnormal cells I had colposcopy and then a cone biopsy then had yearly smears I really think this is linked to LP, I talk to a few ladies who are suffering like us in fact I'm meeting up with one lady soon, where are you from Leslie I am in manchester in Great Britain X
Hi just had yearly smears after cone biopsy. I also read that there are a few ladies who connect it to having episectomy after giving birth.
I live near Preston so not so far away. Would be good to meet up with fellow sufferers. We all seem to be suffering alone don't we.
Oh your close then to me Leslie I'm in swinton yeah would be great to meet up and I know what you mean, it's something we can't really talk about to others we might as well suffer together, I'm going through a divorce my husband cheated on me led a double life for 3 years it's so stressful now he wants the house selling even though he's living with his partner I'm in court in dec so I live alone which doesn't help, I have 3 daughters 2 are married and 1 has just started uni in leeds, how about you Leslie X
Hi karen
I had to finish work 4 years ago due to ill health. Took a couple of accountancy courses. Then had massive flare up and had to finish.
You are very brave back at uni good luck to you. The stress of everything you are going through must be making everything worse.
Hi Leslie
You've got mixed up it's my youngest daughter at uni not me haha I'm a mobile hairdresser shall we arrange to meet up are you on Facebook X