Look up Vulvular VIN or vulva dysplasia. I had what I thought was a yeast infection for 6 years. But I was testing neg, I finally found a dr who did a vinegar type wash which showed I needed biopsies. They came back positive for VIN stage 1 and 2 (precancer cells)
I too dealt with what I (and 3 dr's) thought was a yeast infection FOR 10 years! I recently found an ob-gyn that changed my life and diagnosed me with vulvar dysplasia due to hpv. I have been married for 20 years and have no idea where this came from. My doctor said it's quite possible that I contracted hpv before marriage. This diagnosis was devastating for me. I've only discussed my situation with my husband and my dr. Don't really feel like telling ANYONE that I have an STD. Some days are good and some days I'm close to tears several times a day. I have had regular paps for 20+ years, never abnormal. From what I understand, vulvar dysplasia is not that common (it figures) which is probably why it took so long to get a dx. I dealt with an itchy/irritated vulva off and on (pretty much MONTHLY) for years. Strangely enough Diflucan would relieve my symptoms temporarily. It finally got to the point that I started bleeding during/after sex and sex was slightly painful at times. I went to my dr, who did a pap. It came back normal but indicated some yeast, which again confirmed the previous yeast dx. After some urging from this dr (about 3 years into this game WITH HER) because my symptoms were not "typical" I went to an OB/GYN. She immediately found/excised a spot that came back VIN II. She subsequently biopsied more areas that are all VIN I. And now, here I sit on my 2nd week of Aldera and already raw and weepy in one fairly large area. 10 years into this I haven't really had any true remission, unless you count 2 or 3 weeks at a time. After receiving this dx I quit smoking (after 20+ years) and I now take DIM. I pray that the combination of this new regimen will work. I do not know how anyone lives with this virus! I'm also not sure I will allow another biopsy - the last round of 4 were excruciating, I found myself swollen, sleeping with an ice pack for 3 nights and doubling up on ibuprofen. The fact that there is NO CURE for this scares the hell out of me. The depression of this diagnosis is wearing me down. Anyone with incurable yeast symptoms needs to seek another opinion. I spent A LOT of $ on different yeast cures that NEVER or TEMPORARILY worked. Only to find that my problem was much more serious!!!!!
The following user gives a hug of support to hpv is hell: misty073 (08-08-2011)
Omg I really wish I knew you, because everything you just posted is me!!! I had my first four biopsies last year, but I was put under as I was having lap surgery as well. Today I just had more biopsies taken...the dr said he was going to do 4 or 5 I don't even know how many because I was an emotional wreck when I left. And the area is so swollen I can't even see . I think if the aldera is causing sore weepy spots that's good news, I heard it gets worse before it gets better. I tried aldera 2x and it didn't work for me. I am waiting for an appointment with a vulva clinic to see where we go from here.
I spent soo many years with my "reoccuring yeast infection". I can't believe how many Drs don't know to check. And when I do tell people I know most of the time they say oh I had that...had the cells scraped and now I am fine...they don't understand that it's different with vin. I don't want to downplay the dangers of an abnormal pap...but I really wish that was what I had I can live with out my cervix, but my vulva and other sensitive areas I really don't want cut out.
I am also taking anxiety meds which is helping a bit (diagnosed with anxiety long before this). But I have been on the verge of panic attacks all week because of this recent round of biopsies
So when you say the Aldara didn't work for you, does that mean that it didn't cause any raw spots for you? I'm putting it on a fairly large area and only part of it is reacting.
I know exactly what you're saying about the abnormal pap. I haven't talked to anyone but I've been devouring the internet since my diagnosis. Sounds like HPV is the most common STD, yet MOST folks immune systems take care of it so they never even know they have it. That would be a dream! I would even take a little cell scraping at this point. The last biopsies I had taken were a nightmare that I never want to relive.
I wish you the best with your latest round of biopsies. Please keep us posted (especially me). I've been dealing with this for a very long time . . . I was just unaware of what I was dealing WITH!
No I didn't get any raw areas all it really did for me was stop the itch. I know it's so frustrating it's been 7 years for me. Today is the day after my biopsies and it's not to bad. Sitting hurts but I can deal with that. I have been waiting since may for an appointment with the vulva clinic, the dr who did the biopsies yesterday said to keep calling my gyno and get this appointment asap. That was a little worrisome. And the fact that one doctor with tell me not to worry about something yet another seems concerned. I asked my gyno I was seeing last year about a mole on my vulva and said I couldn't remember how long it had been there. Yesterday the dr removed it and sent it for a biopsy.
When did you get diagnosed? And did your biopsy get rid of your stage 2?
I was just diagnosed in June. The first visit to this gyno (for what I thought was yeast) she immediately found a spot that she didn't like and excised it. She also did a biopsy in another spot. The lesion she excised turned out to be stage 2 and yes, she got it all. The biopsy was stage 1. She wanted to send me to a gyno oncologist but after reviewing my records the gyno oncologist said she didn't need to see me, I should just have a colpo in 6 months. My gyno had me come back in, she did a much more thorough exam and took 4 more biopsies that all came back stage 1. She said she wants me to try the Aldara for a month and come see her afterwards. I'm very new to this game but I've had enough already.
I really hope the aldera works for you, it sounds promising though especially if you are dealing with stage 1 now. Your biopsies must have been large, I was sore yesterday but today just sometimes when I sit wrong...but the itch is unbearable.
I agree it's terrible to deal with. And I am dealing with a husband who seems distanced from the situation. He is very loving and is a great husband... But I feel so alone with this. He says we shouldnt worry until the results come back...but I know this isn't just nothing I have already had the biopsied...this is my second round. I know it's serious...we are just checking to make sure it hasn't progressed.
How long is your aldera treatment? For me it was 3x a week for 12 weeks.
She just said to come see her after using the aldara for a month (3 times a week). I don't know if she'll have me continue after seeing me or not. I assume she wants me to come back in so she can see if it seems to be working or not. She did tell me before I started that the aldara is "not fun" and that it only seems to work for about half of the people who try it. She did seem to think that coupled with the fact that I quit smoking, I have a good shot.
Stage 1 does seem promising; however, I can't help but think it can't be good that I've had it RUNNING RAMPANT for this long. The stage 2 lesion that was removed was fairly large, I'm sure it was in that little hiding spot for years. As for the biopsies, they were large enough for 1 stitch in each spot.
My husband seems to be very supportive so far. He says we'll do whatever it takes to beat it. We don't talk about it much, mostly because I don't want to. He doesn't know much about it and most of what I know I've learned on the 'net. It's frustrating that not much is known.
Yes that's what I had, 4 biopsies done and stitched. But I was also put under when it was done as I was having laproscopic surgery and I got t3s after because of my surgery...I guess that helped alot. When you say lesion was it visible? Like a bump? I have nothing...just itchy. But I did just get a mole removed as this dr wanted to make sure it was ok. I do see areas that are always red now and some that seem to be bumpy under the skin but I guess we just wait and see. I hate waiting. I have to wait a month for the pap results but the rest should be 2-3 weeks. I have to call my gynos office at the end of next week to see if they have heard anything about my specialist appointment...hopefully the results are back.
Last edited by moderator2; 08-10-2011 at 02:23 PM.
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Wow, my biopsy results only took a week. That's about how long it takes for my pap results too.
The lesion was just a slightly raised spot about a 1/2 inch in diameter and white even before she sprayed me with vinegar. The stage 1 areas are all slightly bumpy and either irritated or itchy most of the time. I am anxious to hear how your appointment with the specialist goes.
Wow, I just read your posts. I infact have had horrible yeast that won't let go. I went through all the stuff you guys posted.....I fired my old gyno because he wouldn't listen to me. I tried to cure myself with boric acid, and other yeast stuff like garlic.....I finally found a new gyno who found the yeast through a gram smear. It would never grow on the culture because I've treated and battled for so long. I went on diflo daily form months and months, now have a hypersensitivity to the area, and it seems as though I don't have any active infection now, but can itch due to the hypersensitivity. Zyrtec and zantac help with that, but it's so nerve wracking alwasy thinking the yeast is back and I literally can't tell the difference between the allergy and a yeast inffection.
I contacted Dr. marjorie Crandell, a yeast speciallist who worked with my gyno. I had a dormant infection, intercellular, in which it doesn't show in a culture. It's been a huge battle for me. so where it leaves me today, it seems to be coming from the gut. I had a stool test done and it showed +4. (metametrix GI profile). The battle continues. I'm on an extreme candida diet, no sugar, low carbs, etc......plus some other supplements and antifungals. ketoconozole daily, and diflo once every 15 days.
My cultures also come back negative... they have since the beginning which was nearly a year ago (ugh that makes me angry and sad). In the beginning, my vagina was very swollen and red, itchy and painful. I also had a thick discharge. My gyno agreed that it was definitely yeast even though the culture came back negative twice. So I was treated with diflucan. It didn't work. We tried diflucan like 5 more times and no change. Then we tried clotrimazole cream and then ketoconazole pills (watch out for the ketoconazole - it can shut down your liver and kill you). The ketoconazole worked great for like 2 days and then the yeast came back even stronger.
Then I gave up on western medicine for awhile and found these recommendations that got me to about 90% better. I followed a strict diet, did a cleanse, and then took natural anti-fungals. But I couldn't get the yeast to completely go away, even after 6 months on the diet! So I went back to many different doctors... but I think since I am not experiencing the same magnitude of symptoms anymore and the cultures come back negative, the doctors don't see a problem....
I have been convinced for many months now that the infection was actually in my intestines, so I convinced one of the doctors to prescribe Nystatin pills for me. According to my research, Nystatin is also supposed to work better than the "Azole" drugs (ketoconazole, clotrimazole, fluconazole) on resistant strains of yeast - I suspect glabrata yeast. Anyhow, I think the nystatin cleared out my intestinal infection. I am no longer experiencing the gastrointestinal symptoms that I had previously (changes in bowel movements/color/consistency, I also used to have white specks in my bowel movements which I think was yeast). However, I now have ridiculous itching on one side of the vulva. The vagina itself doesn't seem to be irritated anymore, it's just the outside lips and only on one side! It's so irritating because I want to finally be rid of this. And I'm not sure if I can convince any gyno that something is actually wrong. The last Dr. I went to told me that I was just being hypersensitive and should see a counselor. Grrrr. (Though I will mention that I think counseling is very necessary in these stressful situations. My husband and I are already in counseling due to this issue... and I am looking for an individual counselor for myself as well) But I know that this is not psychological itching... something is actually going on down there. The lymph node is even swollen.
On top of that, I haven't had my period in 3 months (haven't had sex since this all began 11 months ago... and I've had a pregnancy test come back negative as well). My blood pressure has also been very low throughout the whole ordeal, which no one seems to be concerned about, but I find it very strange. It's like 100/60. So I'm going back to a doctor in a few days to see if I can convince her to run some more tests. I've been tested for all STD's, HIV, diabetes, thyroid problems. I've been reading up online and founds something called hypopituitarism that can effect hormone levels.. so I want to have all of those hormones tested. And then I'm also going tos ee if she will prescribe me Nystatin cream to go with the pills I'm still taking... from what I've read you have to get the drug in close contact with where the infection is - so pills to combat the intestinal yeast and cream to combat the vaginal yeast.
Ugh, just thought I would share my story in case it is helpful to anyone. A lot of people find success with the strict diet and natural anti-fungals... I just recommend that you be your own advocate. Research everything you can online and in books. Doctors just look for the easy fix and prescribe the same drugs over and over even when those drugs are effective for everyone.
Last edited by moderator2; 09-03-2011 at 08:31 PM.
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