I dont even know where to start. it was the beginning of july of this year, when i felt a terrible burning on my vaginal entrance, I went to my family doctor and she said she only saw a bit of discharge that didnt even look that bad. She gave me a single dose pill for fungal infection and sent me home. The following week i kept getting the burning sensation,so I went back 2 weeks later and had a swab exam done which revealed an overgrowth of Staphylococcus epidermidis. but during the time i didnt manage to get an appointment, i tried at home remedies with this powder solution called Rosalgin,made as a desinfectant for vaginal infections. I admit prior to this i had used some vinegar on my vulva in an attempt to remove vestibular papillomatosis overgrowth that was bothering me, but i dont know how it is influencing this,over 3 months after. i did get 2 spots on my vaginal introitus/vestibule that are red and raw and still havent healed, i cant help wonder if my doctor had seen them before or if they appeared after from the vinegar,but they should have healed anyways,since its been so long and my doctor upon seeing them sent me home with a healing cream called cicalfate that is basically made of emolients such as zinc oxide. the red areas are now developing white spots and i dont know if it is a sign of healing or not. all i know is that i have to use this cream everyday on my vulva because it burns so much. even wearing pants and sitting for too long is painful. My doctor and my parents think all of this is from taking the antibiotic for the infection (flagyl). but its been almost 2 months after taking it and the red areas where probably there before. and what makes me think i have something else besides just possible chemical burns or irritation is these new areas that ive spotted a couple of days ago upon applying the cream (i use a mirror to do it). they are whitish but not too obvious,they feel smooth and look a bit shiny. they dont itch,but on the right labia minora they look the worst. there is a part in specific that worries me alot. the corner, closer to the urethra, ( as you will see in the photos) feels like its "pulling"some sort of scarring happening that makes it feel and look different when i try to spread that side open. i dont know whatelse to do. i went to gyno ( last week,before even noticing the white spots) and she barely looked at me,she said it was a fungus due to the antibiotics and gave me fluconazole ( 2 pills) and a cream that has hydrocortisone and miconazole that was to be applied for a week. I used it and it burnt so much with no improvement, i assume its because the red areas are wounds not just redness underneath the skin. I dont know what to do. Im 21 and a broke college student,my family is overprotective and has been going and paying for these appointments,but they have now given up. they say its just a side effect from the antibiotic and believe its all in my head. im going in to my family doctor again in 2 days and i already know she will take a 3 second look at me and ignore what im going through. i just want a diagnosis and proper treatment. I feel ignored and alone. im so scared. They all see me as crazy because i have anxiety and depression. I have no money,and after going to the family doctor again and getting another no, what am i supposed to do? Ive heard of a vulvoscopy,but in my country i cant seem to find it in my city and it looks like they require a doctor's request. I need help,please answer me.
I SO feel feel for u and especially because u r SO young...your photo's look a lot of what my vagina looked like before I found the RIGHT doctor and this IS the key "find the right doctor"....so he can diagnose exactly what u have...I am 68 and a after my hormones stopped is when my situation arose...the lining of the walls of the V, pain sex, fungal infections, discharge, itching, and burning were things that began to bother me...I visited by OB and he really had not too much to say (as a matter of act he did NOT mention LS)......speaking with a friend she told me there was a Vaginintis Center in Philadelphia with a doctor who was a "God" with any issues of the vagina...took me a few months to get in and once I did it was MAGIC how fast when I did what he told me that I felt like my old self...the doctors name is Paul Nyirjesy, and he is unbelievable...I am on Estrace (injected into vagina) 2 times a week and use Clobestasol (vaginal use) 2 times a week, do not take many hot baths (just showers) use a lub of coconut oil during intercourse, wear only cotton panties and this has bought me back to life...I have heard (on this site) some women r using Tacrolimus and after reading about that (as I am always looking and listening to what works for someone)...I am so glad I am on my 2 prescriptions as that drug has SO many side effects..I know being on a steroid is not the best thing BUT it works and I can have a normal life...and that is what matters to me...find something who is educated in LS and your life (hopefully) will be back to normal...wish u the best...
I am so sorry you are having this problem. The only suggestion I can make is to google lichten sclerosis specialists and make an appointment. I was lucky that the ob/gyn i chose was well versed in that. I am in my late 60's and was diagnosed 2 years ago. I was given Clobesterol ( a steroid cream) but two years later it has really progressed. I am now trying a lasar therapy that has been promising but is not paid for by insurance. My LS was diagnosed with a biopsy at my insistance as I thought it was cancer but the initial ob/gyn took one look and knew what I had. Now my LS had progressed to scarring and fusing. My clitoris is completely covered in scar tissue. The lasar therapy is called Mona Lisa Touch. I don't know if it will work as I have only had my first treatment. Hopefully you don't have LS and something else. You are smart not to ignore this. Good luck and I'll look for your posts. Don't give up on finding the right doctor. My specialist for LS is a urologist so maybe you would have better luck seeing a urologist.
Cat - I am with Vickie, you need to find the right gynaecologist or dermatologist. Are you in the UK? Ask to be referred and really lay it on to the next doctor how unhappy you are and how much discomfort you are feeling. To my eye it doesnt look like LS as your skin is a healthy colour but I am no doctor. You will get there in the end but you need to make a fuss.
What is bringing me down the most is not having my Family 's support. whatever it is, I KNOW is there and not just showing up in the pictures. these white smooth areas sometimes blend more with the natural pink of the skin,but they have a different texture,so obvious when i am applying ointments. I know I am young and maybe thats why my family doctor doesnt seem to care. My family had told me its the last time i am going to see her for this issue (i am going tomorrow) and im afraid that if i cry she will deem me as just depressed but i cant help cry. i cant help look crazy by showing pictures. i know she will say its from the flash of the camera and im bracing myself to what i can do next... i have no money and no support from anyone,but not even if i have to go to the emergency area of the public hospital. this doesnt itch,but oh god does it burn. Thank you so much for your help. i am typing this while i cry...
Thank you so much. it helps alot to feel validated... i know that its not in my head because i feel the constant burning,and the way the areas feel smooth and different from the rest of the skin. there are times where they seem to blend in with rest of the surronding skin,maybe because of the creams i use. but once its washed with water and dried you can see it better. my family doctor (last time i saw her) didnt even have me seen at the gyno bed/chair ( forgot the name in english) i just layed down on a regular medical bed and spread my legs. Tomorrow i am showing her the pictures and demanding to be seen properly with the use of a Light and all. my mother is coming with me and i know she will just sit there thinking im being crazy. if this appointment fails i have no idea what to do next. i dont think we have that sort of specialists over here but i cant give up. it hurts too much
I am in Portugal. Without my parents' support I wont be able to see more gynocologists. they are all very expensive. My last hope is really pleading to my family doctor and if that fails, going on the emergency room and wait for hours to be seen by someone at the hospital
the laser TX is called "Mona Lisa" - be sure u read all about it - my doctor said the creams" were doing a great job and did not suggest doing it...sure u know it is NOT covered by insurance as it has not been approved here in the US for coverage....was first used in Italy...I must say that the creams have been working for me so I am not doing it at this time...it is about $2000. and I would do it if I thought it would work...good luck..
thanks Vickie. i really hope it works. clinical trials show promise. wish the Clobesterol would have worked for me but hasn't helped much. i have tearing and scarring and fusion and of coarse pain and intense burning and itching. so I am pretty desperate and if it would have coat $10,000 i would have tried it. my treatment total is $2,800 and will cover all treatments no matter how many I need. it varies depending on each individuals response. the doctor estimates maybe 6 with the average being 4. in my case the steroid cream made my tissue even thinner. i'm so glad it is working for you! i'll post my outcome when its over. fingers crossed. these are given at 6 week intervals so it may be awhile before i see any improvement.
It looks like you have blisters, although it is hard to tell precisely. I would suggest that you stop putting so many different creams on it. Vinegar is an acid so you have probably burnt the delicate skin, which apart from the 'bumps' I could see looks perfectly healthy. You don't appear to have LS as far as my own experience goes. I would suggest that you ask your pharmacist to recommend a barrier cream or try petroleum jelly to protect the skin from burning when you urinate and give it time to heal on its own. the skin is very delicate so you must go easy and not keep applying different things. Try the barrier cream and give it time to protect your skin.
also for anytime u r urinating IF u take a cup or glass or warm water while u sit on the toilet and pour it over the vagina while u urinate it will cut the acid and not burn as much...
They are not blisters,its vestibular papillomatosis, benign small growths. the shiny scar like areas are what burns me the most,along with the red spots. the barrier creams are what ive been using for almost 2 months now with no improvement
ive been doing that. Only way i can urinate
I am so sorry you are having to go through this and I am glad you have found this forum. There are many different reactions that people with LS have. We are all different right. I have never had burning just intense itching. What really helps me is soaking in a tub with 1/2 cup of baking soda in warm water. I will soak 2 times a day if I am having a bad flare. I know when I get tiny cuts on my vulva soaking helps to heal them quickly. As far as your family, I would show them this forum to help them understand. Listen to your inner self, only you know what you are feeling, don't give up! We all believe you and you are not crazy or over reacting, you know your body and have unfortunatly been to Doctors who don't know what they are talking about. Let us know how you are doing, ok. Go have a soak, I hope you feel better soon! Jen :)
I am so sorry you are going through this. I was seen by several MD's who thought I had a rectal tear. My MD sent me to a surgeon who did a colonopsy because I was so swollen, bleeding and I had a terrible time having bowl movements. I had severe sores and narrowing of my bowl. I also had sores and bleeding in the vagina . After the surgery he said I don't know what is wrong with you, you need to see a gynocologist. This was over a span of 8 months until I saw the gynocologist. He knew right away. He told me months later that I had one of the worst cases he had ever seen. LS is not very common so most doctors have never seen it and most often they mis-diagnose it. As someone else mentioned maybe let your mom read this site. I hope you find the right doctor.
cat, aren't you covered by National Healthcare there? Or do you have to pay for private care because you are over a certain age? If you go to be seen by a resident or intern in a hospital rather than an experienced gynecologist I'm not sure you will be properly diagnosed. This is something that requires someone with specific knowledge. If it is lichen sclerosis not many doctors know about it because it is not a common disease, especially for women your age. Is there anyway you can see a specialist at the hospital?
I don't understand why the doctor thinks your discomfort is caused by having taken flagyl. I have taken that when I was younger and as recently as last year. It never had a negative effect on my vaginal area, but it certainly was effective for clearing infections that caused itching and discharge. It works for non-specific infection (bacteria isn't identified).
Don't wear anything tight fitting. Are you working or going to school? Go without underwear if that's possible to let the area air out. If you feel better lubricating the area use whatever has given you the most comfort so far. I know what it's like to have an improperly treated or misdiagnosed infection as I had one for 5 years and suffered a LOT. Crying is not going to help you. You have to be strong, believe in yourself and know you will find help.
You know more about your medical care system than we do as we are in different countries. Get on the internet and search for gyn specialists and find out what your insurance provides. You will eventually find out what the problem is, but it may take some time. But you can't retreat into feeling helpless. You have to speak up for yourself. If you become overly emotional you will be treated like a child. If you haven't already, read up on LS. If the symptoms seem to match yours print up the info and when you go to see a doctor bring the info with you.
What you are going through is miserable, but everyone here has had our own version of misery so you are not alone. Try to talk to your mom as an adult, not as her child and explain you need another woman's moral support, if not monetary support. Maybe she can help you through the national health system. If not are there social workers at the hospital who can advise you?
I can't tell from the photos what is going on. When I was diagnosed with LS the gyn examined me for a long time looking very carefully and with very bright light. If what you have is LS it should respond quickly to steroids. You say you have used a cream for yeast/fungal infections mixed with a steroid? Seems that should have brought you some relief. I use a mix of an anti yeast ointment with a hormone cream along with a steroid ointment. But we all have somewhat different treatments.
Try to be positive, know that one way or another this will be resolved, but you may have to go through a certain amount of hassle before it is resolved. Make a plan based on the options available to you. You have to be your own advocate.
I wish you the best of luck and hope you can get to a proper doctor soon. Let us know how you progress. As awful as you feel, it is not the end of the world. You will eventually get this under control. This is not hopeless. You just haven't been seen by the right doctor yet.
Tell your mom that a 71 year old woman has told you to tell her that these problems are very real and you need to find proper care with the right doctor.
Try rinsing with cool water and a little baking soda. It may bring some relief. Pat dry or use a hair dryer on cool setting. Remember, you will find help and this will be under control.
I went back to see my family doctor yesterday and she dismissed me completely. saw me again and said everything looked normal. I do have to pay im not covered by the health care system. I dont think we have LS specialists at the public hospital,we have gyno doctors there but I need my family doctor to reference me so i can get an appointment with one. And that is my last resort... I have to keep showing up until she gets annoyed and send me to one,and even once that happens, it will take months for me to get an appointment. Our health care system is really slow. Ive been googling good gynos but cant seem to find vulva skin conditions specialists and even a simple gyno appointment is really expensive. My mother told me i have no other choice but to be persistent with the family doctor. And frankly it is the only way to go... we dont have the money to have this seen privately.
But I know I have these areas that have a different texture... they are not very noticeable at times but they are there... and scaring me alot. the red areas are developing some sort of dots that look white, I dont know if it could mean healing,but I dont think so because it seems to be stuck like this. I will post more pictures below. ( And i did show them to the doc and she said it was normal...)
that corner looks like that. whitish and feel smooth. the cream around its the zinc oxide emollient. i will try to get better pictures later
I have LS and have had red spots like that on the inside of the vagina right before the canal. Gynecologists disregard them altogether. For itch, they have steroids and antifungals, that's it! I purchased the vaginal French medicaton Polygynax from a pharmacy in Europe upon the advice of the pharmacist for itch (you insert it inside the vagina for 6 days). It is made of 2 antibiotics and Nystatin, an antifungal. This was the first med that gave me complete relief and even restored the normal color of the tissues down there. Also, I cannot see those red spots anymore. Now, I did get some yeast on the tongue, which I treated with tea tree mouthwash and oregano capsules by mouth for a couple of days. So, you may get whiteness from fungus overgrowth if you do not take probiotics together with Polygynax (at a different time of day!), but an antifungal will clear it in 1-2 days. I forgot to take probiotics together with the antibiotics (again, not at the same time), so I got the fungal overgrowth until I cleared that. You can also take S Boulardi yeast together with the antibiotics. Eat a lot of yogurt. You need lactic acid down there. I am planning to try using vaginal Lactobacillus probiotic to maintain the effect. I hope that helps!