I have also had this for 3 years. The problem is that if we don't know what caused it, we wont know how to cure it. But almost nobody states how it started. Unless we all mention how it began, anything unusual that happened around the time the symptoms began, we wont be able to connect any dots and figure it out. Please everyone, also include what you think may have caused it. New sex partner, extreme stress, etc? Otherwise we will never figure this out. Thank you!
So many of us are suffering with the same symptoms, but nobody says what happened around the time the symptoms began. Were you with a new partner, did you start birth-control, was there a stressful event in your life? Unless we tell the details of what may have caused this, we’re never going to find a cure. It’s great to just list the symptoms, but we also need to explain what was going on in our lives during the onset of the symptoms. Otherwise we’re never going to find the cause or the cure. Please reply with any additional information. There has to be a common denominator among all of us!!
Is there any new treatment? I think this may be what I have...
For the past 5 years I've been suffering with on and off again painful exterior vaginal itching to the point of skin bleeding. All sorts of tests have come back negative. Ugh. I'm 53 and this has been painful and embarrasing.
My NP thought it was due to lack of estrogen due to a hysterectomy back in 1998. I tried the expensive Premarin and miraculously it went away for over a year. Then it came back with a vengeance. 4 to 5 months of Premarin did nothing this time.
Then last month on an European vacation I got a horrible, unrelated skin rash that over ten days wrapped around my legs. The discomfort of itching forced me to look at home remedies since I was out of the United States and had no other option. I bought tumeric and olive oil and rubbed the paste directly on the rash and no burning. Total relief!! After five days and 7-8 treatments the huge painful rashes went away.
Now home and telling my NP how amazing Tumeric must be she suggested swabbing my vulva area with same paste once a day. Never would have thought of that. So using a cotton ball, I swabbed some olive oil and tumeric on the painful, itchy area and went to bed. Aftet 4 nights, the itchy, burning, painful vaginitis is gone. Just wanted to share this in hopes it might help someone. Tumeric stains so be careful. Good luck.
I am 45 years old and I also have inflammatory vagintis. Also can be called atrophic vagintis. There is no cure and doctors cannot explain how it is brought about. My doctor says most women get this after menopause but I haven't had menopause yet. I find that what helps me is washing my vagina area with Aveeno sensitive skin body wash and Replens lubricant. The body wash is inexpensive but the lubricant is around $20 a bottle. I hope this information is helpful to you all.
Hi. How much boric acid do you take in each capsule? Orally or vaginally? Have you recovered or are you still treating DIV?
Hi. How much boric acid do you take in each capsule? Orally or vaginally? Have you recovered or are you still treating DIV?
Try Dr. Donna Richey, an obgyn. She knows about DIV. Good luck!
I am a 32yr old mother of two. I have been suffering from episodes of intense burning and discharge for years now. I'm currently having an episode that began about 8 weeks after giving birth to my daughter. I have never been able to figure out what was wrong with me but DIV sounds like a big possibility. In the past I thought I was allergic to pads, soap, underware. I have a lot of discharge that ranges from cloudy and watery to thick like rubber cement. The discharge feels so acidic like it's burning the area near the opening. I try to wash it off as many times as I can to get relief but it only take a bit of the burning away. I fee like I'm missing layers of skin on my labia and they fee raw. The doctors have tested me for yeast and BV and frayed me for them even though the test results are always neg. I recently tried Relagard to balance the ph but it didn't work. I've tried probiotics, Caligula and Difulcan. Nothing helps. I'm not sure why my symptoms subsided in the past. Each episode lasts for months. I was fine during both pregnancies but had episodes afterwards. The doctor treats me like I'm crazy and like im bothering him. I'm looking for a doctor near the Los angeles area who is familiar with DIV and that can help me. PLEASE!!! I'm ready to pull my hair out dealing with two small kids and working full time. I don't know what to do. I recently started the mini pill to try to regulate my hormones even though dr said they are normal. Last ditch effort I guess.
Please hep ladies. Thanks!!
I have Desquamative Inflammatory Vaginitis and Lichen Planus.
Here is what works for me:
1) understanding the condition
Apparently many doctors believe DIV is an internal symptom of Vulvar Lichen Planus. If you have DIV, you may benefit from Clobetesol cream (a steroid that helps with skin cracking, burning and itching) and Hydrocortisone Suppositories.
I encourage all of you to do as much research on DIV and lichen planus as possible. Ask your doctor to print out information for you from uptodate.com, a website used by doctors.
2) Finding a regimne that works for you
When I am having a "flare up":
- I take long soaks in a warm-hot tub of plain water each day after I shower.
-After the bath, I pat dry with tissue and apply Clobetesol cream to red areas.
-I also insert Hydrocortisone 25mg suppositories twice daily during a flare up of symptoms. You will need to lie down for about 20mins after inserting to ensure that it doesn't immediately leak out. You should also wear a panty liner.
-****Most importantly, I take 4-5 probiotic capsules made by RePhresh ProB daily. I buy them at the drug store.
When my symptoms have subsided:
-I stop the Clobetesol and Hydrocortisone.
-I continue to take warm/hot baths frequently
-I take RePhresh ProB probitotics daily and sometimes insert the RePhresh ProB vaginal suppository to promote healthy pH
3) Don't ignore early symptoms
I recognize that the first symptom prior to a flare up is itching around my clitoral area. As soon as I notice this symptom, I take additional ProBiotic pills, a RePhresh ProB vaginal suppository, additional soaks in the tub, and I begin Hydrocortisone suppositories.
I hope this helps you. When my symptoms flare up, they subside within a week if I follow my regimine.
Good luck ladies and stay strong!
Hello girls! For almost 8 years I have the same problem. Does anyone have progress with witamin d treatment? I've just strat with vitamin d but no improvement yet.
I was also wondering how you girls are doing. I just got diagnosed with IV from Dr. Fowler. Progress anyone?
Read your posts. I also saw Dr. Fowler earlier this months and was diagnosed with inflammatory vaginitis, vulvodynia, dematosis, ang lichen sclerosis. He put me on all the hypoallergenic products, as well as estrogen suppositories, progestin oral, vanicream with 2.5 hydrocortisone, metronidazole vaginal gel and terconazole suppositories. He told me I wouldn't have any improvement for four to six months. I wanted to check in with how you're feeling. Chiaramia
Id like to mention I used to have irritation and inflammation and itching in the past. I still feel a rawness sometimes
After sex and inflammation. It just depends. I am most against any discharge and smell which can cause all those things. I also see Dr Hank Williams in Laguna beach who is amazing but very holistic. I like to get every end. I've tried everything. The grandmas lye soap and vanilotion have mentally been working wonders!
So now I'm more on the med side. I'll update on how it goes and my final conclusions. They say it takes up to 4 months. At the end of the day how we feel and microscopic pics and knowledge (facts and results) is all we can base anything on.
Please everyone continue sharing!
Hi all new to this discussion!
I just visited
Dr. Fowler in Scottsdale AZ. I drove from LA to him
Because I wanted the in person visit. You can send a sample to him for 120.00. I paid the 120.00 for lab results and 250.00 for visit on top of meds and other treatment products.
He is one of the only doctors here in the US that have special microscopy and the knowledge to tell you what you have. The only problem is I am distrusting and this area-sexual health in particular women's vaginal health is extremely new and still evolving-they really don't know ****. The plus side of Dr. Fowler is he attends the world conferences, seems to have good general knowledge (we can go back and forth with his expertise and my
Insane research for the past 5 years) and publishes articles frequently and regularly. I have a more holistic approach and need for the root and cause and proper ailment while he well he's an MD what can you expect. I am putting my faith in him.
I have IV not DIV. The maturation of my --- cells were in the middle.
Women at my
Age should have the fully matured --- cells. Apparently my vaginal receptors are not taking in the estrogen I am
Producing. So I have white blood cells it was 13-24 count, there should be none. My body is preparing to fight off an infection I don't have. Because I am
Not getting enough estrogen in the vagina there is not enough of lactobacilli good bacteria in my vaginal flora pattern. This is from what I understand. So these white blood cells die off every 2-3 days and release toxins. These toxins can cause a bad odor and vaginal discharge that is unfavorable. MY pH is 5. Neg for trich. I notice I have more frequency to urinate and have experienced vaginal bleeding/spotting in between periods in the past 2-3 years and have never ever had this happen before since I started having periods at 13 or 14, can't remember.
Anyways in past when I used Gy-Na-Tren before which are boric acid pills, org coconut oil, reuteri oral probiotics, grapefruit seed extract oral vitamins, b/d/e vit, folic acid, and go live probiotics things seemed to be perfect.
Except after sex after a few days I would shower and swab to see unfavorable discharge. I have pain with sex sometimes but it's not a dry issue it's prob a cervix issue. Thought I may have PID or endometriosis.
Still unknown. Went to original doc and my pap came back for BV.
So finally after dr fowler apparently normals docs or Obgyns don't know ****.
Hopefully he knows a little more. I am
Trusting he does altho reading all the forums on the Internet gives me little hope.
Now I am on cleocin ovules, terazol and e1/100mcg e2/60mcg combo which is estradiol and estrone. Knw your stuff! Also my diet is not perfect. But you all should cut out carbs, gluten, alcohol and sugar. Basically eat 100 percent clean and non processed food, obviously no soda ever, if you follow that and still no results id be shocked. I don't follow the perfect diet but I try and know when I need to start on it. I use grandmas lye soap, vanicream lotion and cream bar and this wierd solution stuff you're suppose to use when you pee which to be honest I have not tried yet but he reminded me to today. I also smoke cigarettes and wear thongs everyday. Except right now I'm not. You do what you can. Luckily my symptoms are a 3/10. But I want it to be perfect and normal is that so much to ask for? No.
We need that as women.
Together we can do anything.
Lets see how it goes. I'm on a mission to develop my own fem care line and facility so no woman every has to feel less than perfect. Well all be above and beyond.
Working to put my
did this work? very intereste to know.
wondering if any of you have found some relief.
Ive been iagnosied with desquamative inflammatory vaginitis after suffering with ridiculous amounts of discharge for the past year and a half ( you can go through my previous posts).
Occasionally my swabs would show yeast, but not much else. MY ph is usually alkaline about 6.5, but no abnormal bacteria, an sometimes no lactobacilli. Most of the time there are no white blood cells either, suggesting no infection.
I recently had a biopsy an it showed inflammation down into the deeper levels of the vaginal epithelium, desquamation an thinning of the vaginal walls. I did a months worth of clindamycin but ended up with a yeast infection and as soon as treatment was finished the discharge came straight back.
I tried boric acid but the amount of watery discharge it produced was just horrific and I couldn't bear to continue. It was literally like I was weeing out of my vagina. I also find this "watery" feeling happens after sex. , but most of the time the discharge is thick, white, slightly yellowish and in huge amounts.
Im currently trying a months worth of clobetasol and clindamycin cream every second day.
Has any one had an success with any other treatments or the vitamin d theory? my vitamin d levels are within the normal range but id still like to hear if anyone has had success with this.
Just so you all know Doctors do not know what causes this yet. That is why the University of Washington is going to do a study to find out. I am going to ask to be a part of that study if I am not cured by then. And it sounds like I won't be. This came out of the blue for me. I am 51 and haven't had any problems. I just thought it was yeast infection at first but I usually only get one of those when I have taken antibiotics. The Doctor at UW said' "a normal lab never would have found this." You see she does the exam and takes the samples and tests them herself immediately. She knew exactly what she was looking at and drew a picture of the cells on paper for me. The difference between BV and DIV. Because I was diagnosed with BV prior to this. Those UW Doctors are smart. If you want some relief of this for a couple weeks ask for cephelexin. You won't be cured but you will get some relief for a while.
This started for me on April 25th and I have been going through it ever since. At first I was treated for bacterial infection. I saw 5 doctors. I was put on Cephelexin by the last Gynocologist and it worked and I felt great. But then it came back. So she doubled the dose and put me on it for 2 weeks. I felt great again. But it came back. Then she sent me to the University of Washington. I was diagnosed with DIV after the antibiotics wore off and they could get good samples. I was ecstatic I finally knew what it was. The Doctor placed me on Clindamycin and said I would feel better within a week. I thought I was going to be cured. WRONG! I am now on day 17 of Clindamycin and it has done nothing, infact I am worse. The itching, irritation, and discharge are unbearable. After E-Mailing Her, (Doctor) twice and telling her this med is doing no good she asked me if I wanted to go on compound steroid cream. I'm not the Doctor why is she asking me. After reading all these posts I started crying. It sounds like there is no hope. My husband and I have had sex like 4 times in 5 months. The UW is going to be doing a study in 2 month to find out what causes DIV. That gives me some hope.
Hello everyone- Nice to know I'm not alone. My symptoms started after a yeast infection, then I had a staph infection, and now my doc said Div. she told me to use acidophilus probiotics vaginally. Hopefully it will help. If not I will call her and ask for some steroid cream.
Hi All l feel all your pain, I have had DIV for a long period only just been diganosed last year properly-after suffering 10 years to be told l had thrush or std treated with antibiotics l did have trichomas intially though cleared up after many tests told l had to much Strep, sheding white blood cells, tired lots of things, including going off the pill....sadly it made no difference, mine is now managed by Dalacin V Cream...seems to be only cure although my specialist said pregnancy can make it go away mother nature sure has a lot to answer for how can you when its that painul to do the deed in the 1st place....so horrible as l'm only 39, makes relationsips incredibly hard. I got desperate and tried seeing naturepath, initially it worked, then found before or after every cycle had bad infection, tried lowing my sugar no result, at my wits end with this, told l've got it for life....if anyone has any other bloody clues...let me know.....depressing:( sometimes just get anrgy want to cry, partners can't cope.
You insert it vaginally. You doctor can prescribe from a compounding pharmacist. I just started it and will post back if it works.