Im so depressed, please help...Possible vulva lichen/dystrophy?
Posted , 15 users are following.
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, 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.
0 likes, 44 replies
Guest
Posted
ps: I am a virgin
vickie00010 Guest
Posted
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...
Guest vickie00010
Posted
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
Cmcm1987 Guest
Posted
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.
Guest Cmcm1987
Posted
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...
vickie00010 Cmcm1987
Posted
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..
Cmcm1987 vickie00010
Posted
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.
sarb73328 Guest
Posted
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.
Guest sarb73328
Posted
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
Wicki Guest
Posted
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.
Guest Wicki
Posted
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
vickie00010 Guest
Posted
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...
Guest vickie00010
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ive been doing that. Only way i can urinate
Starlight8 Guest
Posted
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 😃
laurie73352 Guest
Posted
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.