Guest guest Posted October 30, 1998 Report Share Posted October 30, 1998 Hi, Some of you may remember me from Dr. Galzer's list. I'm doing " ok " and throught I would give the list a try again. I am white, blonde (at least I was born blonde), 5' 31/2 " tall, 130 lbs, married for 30 years to a great guy (Larry) and have 3 sons, (ages 29, 28, 21). Work part-time at the public library in the children's dept. Symptoms: constant burning feeling from the vaginal area red streaks of inflammed skin from top to bottom on each side of the innner lips, some bit of inflammation of the vestibule glands Diagnoses: lichnoid vaginitis, atrophy , vulvo vestibulities Doctor: Jessicia on, Milwaukee WI. (Supposenly one of the top docs in this field, but personally have not much faith in her. She also has the " top " fees!) Story: Had bad flu in Feb (101-102 fever for 3 days), was on antibiotics for 18 days for it. March 1st burning started with the inner lips inflammed (just those streaks on each side of the inner lip). After local gyn could not clear it up saw Dr. T in June. Treatment: 10 weeks of ESTRACE cream (for atrophy) Did help that but burning stayed pretty much the same) Aug 1: Was prescribed the Estring to insert vaginally (releases estrogen (2 mg) over 3 month span. Very easy to put in and out $60 Prescribed TEMOVATE E steroid cream (highest potency steroid cream made 0.05%). Told to mix 1/2 " of Temovate E cream with 1/2 " Estrace hormone cream and apply that nightly, using just the Estrace cream in the morning. I have been doing that since the first of Aug. which is pretty scarey from all that I have read about the high potecny steroid creams! I did just recently get a good yeast infection and had to be treated with oral pills for that--Dr. T keeps claiming that the steroid cream nor the Estrace will cause yeast infections!!!!! She has told me to keep using the creams at night until my Dec 23rd apt. Started using the anti-depressent AMITRIPTYLINE about a month ago, starting at 5mg and working my way up to 40 mg (I am up to 20mg, increasing by 5 mg every two weeks). Suppose to act on the brain for pain control. How do I feel after all this time: Somewhat better, not 100%. Not as much burning, but skin looks the same. Don't know if the creams are helping or if its the pills working and masking the pain.????? My main problem with what I have is not exaclty knowing what " lichnoid vaginitis " actually is! I keep getting different answers to that from Dr. T, my local gyn, and a dermatologist I saw. My understanding is that it is not lichen sclerosus and not yet lichen planus, but I could go on to develope either one possibly. Dermatologist said it was a " cousin " to lichen planus. Cannot find anything with this term on the internet or any medical books. I have had no tiching with this yet at all, just the burning. Never had pain with intercourse or inserting a tampon. Very little trouble with yeast infections, only when expecting my three kids each time, and maybe twice after that. But it always cleared up after using the meds for it. Will be seeing a new Doc on Nov, 3 (a 2 1/2 hr drive) who is a reg GYN but sees some fo Dr. T's patients who can no longer afford her. Only thing is just found out today the guy is moving to Maine end of Nov.! Darn. But throught i would get his opinion anyway as HE is on my insurance provider list, unlike DR. T who my insurance is paying about 50% of all my bills. (Which in 3 visits so far is almost $3,000). Some tips: If you go to a specialist, be careful: some of the tests they do (biopsy, etc.) can be done by your own doctor, but the specialist will charge almost double for doing them. You can request your biopsy to be sent to the Fl lab at the U-Fl which deals with the more uncommon conditions. Your doc would need to request it. I can send anyone the address. Ask how much aprox each visit will cost well in advance of your apt. (On my second visit I did not know it would be costing me $1336.00 for a cervical biopsy, a skin biopsy and a blood panel). I was shocked! (And expected to give a $200 payment that day!) Have a list of questions and ask them, don't let them hurry you out! Ask about any side affects the treatments they give you may have. (Be sure to have a list of any drugs you are now taking along with you). Don't be afraid to write to doctors who's names you find in your research--many will write back to you with advice. Include a self addressed stamped envelope. Get a second and even third opinion if your doctor mentions surgery! And try and find others who have had the surgery and how it worked for them. Surgery puts mega bucks into doctors pockets so you need to know if the surgery will help alot or not much (or even make it worse). Sorry if this is way too long for the list. I pormise to be shorter from now on, but wanted to all to know what I am dealing with and hopefully help someone out there new to all this. I've only delt with this for 8 months but it seems a lifetime! Anyone can e-mail me directly if they want at nickels@... Thank you Heidi for starting this list. I hope everyone has read Heidi's story and what she has gone through. Her web page is wonderful! We can get better if we help each other and be honest with each other-is something works for you share that with us, but tell us the bad too so we know what to avoid. Take care. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1998 Report Share Posted October 31, 1998 Hey Marie: Don't worry about that, Marie!! Your post was great. It had a lot of good advice and was really informative. I don't have any rules about length of posts and I doubt I ever will. If you have a lot on your mind, feel free to say it!! I wanted to ask you, too. How did they come up with the diagnosis for the lichnoid vaginitis? I'm curious because your symptoms sound similar to mine. Also, was the burning coming from the labial area or from the inside of your vagina? Heidi > Sorry if this is way too long for the list. I pormise to be shorter > from now on, but wanted to all to know what I am dealing with and > hopefully help someone out there new to all this. I've only delt with > this for 8 months but it seems a lifetime! -- For information and resources about Vulvodynia, Vulvar Vestibulitis, Fibromyalgia, Depression or Chronic Illness , please check out my website at http://www.angelfire.com/hi/HeidiHomePage Feel free to email me directly at mailto:dwalsh@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1998 Report Share Posted November 1, 1998 Hi.The diagnoses came from a cervical biopsy done by my Milw specialist and sent to the University of Fl lab (It is suppose to be one of the few labs in the country that can diagnose uncommon conditions. Anyone can have their own doc do the biopsy and request it to be sent to this FL. lab.) To tell you the truth, I'm not exactly sure where the buring in coming from! I don't think inside the vagaina, but more from the glands and the red streaks I have on each inner lip. The " discomfort " is constant, usually worse in the morning and at times not too bad by early evening. When I put the Estrace or Estrace/Temovate mixture on it'll hurt a little bit mostly on on left side on the glands. It does not burn worse when I urinate (thank heaven). I don't think yeast can be the cause either like Robin. When I was first put on the Estrace, I was give a 10 day 200mg 1xday anti fungal pills to prevent a yeast infection, then just lately because Idid get a yeast infection I was put on 10 days 200mg 2 x aday, and two weeks later as the yeast infection was not gone yet, another 7 days of 200mg 1x a day. So far I have no lesions( on skin or inside) nor has the skin turned white where the redness is. Everyday I wake up thinking today is the day it will get better, but it just doesn't. I am tempted to write Dr. . I did write Dr. Hope Haefner at UW-M as she is also a top specialist in vuvlar diseases. I sent her a $20 check and asked her just to look at my biopsy reports, and my doctors notes and give her opinion. So far I have not heard from her, (its been 2 weeks), but I feel I will. I know a women who has gone to her and says she is very caring and does get back to women who write. I keep thinking there must be something out there that will help. Been on the antidepressents at 20mg for 2 weeks so they may help once i get up to a little higher dose. Marie Heidi Walsh wrote: > > > Hey Marie: > > Don't worry about that, Marie!! Your post was great. It had a lot of > good advice and was really informative. I don't have any rules about > length of posts and I doubt I ever will. If you have a lot on your > mind, feel free to say it!! > > I wanted to ask you, too. How did they come up with the diagnosis for > the lichnoid vaginitis? I'm curious because your symptoms sound similar > to mine. Also, was the burning coming from the labial area or from the > inside of your vagina? > > Heidi > > Sorry if this is way too long for the list. I pormise to be shorter > > from now on, but wanted to all to know what I am dealing with and > > hopefully help someone out there new to all this. I've only delt with > > this for 8 months but it seems a lifetime! > > -- > For information and resources about Vulvodynia, Vulvar Vestibulitis, > Fibromyalgia, Depression or Chronic Illness , please check out my > website at http://www.angelfire.com/hi/HeidiHomePage > Feel free to email me directly at mailto:dwalsh@... > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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