Update

I am about halfway through until my next follow up visit. I think I have found some kind of balance with my new medication combo. I am supposed to be using the compounding cream twice a day--but I am only using it once a day in the morning. I am not supposed to use it at the same time as the Estrace, and when I went with out the Estrace for two weeks things started to go south (no pun intended). So I am using the compounding cream in the morning and the Estrace in the evening before bed. I am generally doing okay.

One thing that I have mention before that I am experiencing are the cysts. They show up about once a month with no pattern to the time of the month. My doctors have confirmed they are cysts, but have no reason for why I am getting them. Has anyone else experienced this too?

And We're Back to This Again

I saw my doctor again for my 3 month follow up. We are keeping the DIV diagnosis but adding back in the provoked vulvodynia diagnosis for the perinum area. I thought I had ripped it, but I was wrong. I am now waiting for a compound cream to just do in that area. I am really nervous about adding something to the mix, because I have been having a lot of good days with just the Estrace cream, although I will admit that I am worried that I am starting to slip in the sex comfortableness area. I keep reminding myself that this is only for 2 months and if it doesn't work we can go back to what I am doing. I am just worried that if it aggravates the situation I won't be able to go back.

Why oh Why can't my vagina behave normally!

So I have been doing pretty well the last few weeks, however, nothing is ever easy with this situation! I had pain while wiping so I checked it out and found a dime sized lump on my labia minora. It is painful to the touch, hard, smooth and with no head. I am STD free and in a monogamous relationship, but neeedless to say this has caused me a major freak out. My friend thinks it might be a boil. I have emailed my specialist to see what she thinks and if I should go see her, go into my regular doctor, or wait this out. I have also looked up all the Estrace side effects to see if this is one of them. I hate this and I hate how freaked out I get whenever anything happens to me down there! And of course with my luck things like this only happen down there after 6pm when the doctors offices are all closed!

Pattern to the Pain

I have been tracking how things feel "down there" for the last several months in a journal and I am definately seeing a pattern regarding when I hurt and when I am okay. The most interesting part is that there it appears to be a pattern and it appears to be linked to my cycle.

Trying the Gym Out Again

So after not going to the gym since September because I have been trying to get the DIV under control, I decided today was the day to give it a try. I have been doing pretty well for the last month with my estrogen treatments and I am NOT liking how my spring clothes are fitting so I figured I need to try something. I wore my loosest pants and did about 20 minutes on the recumbant bike and 20 minutes on the elliptical machine. Then I flew home, showered and put on a nightgown so I would have no clothing pressure.

I definately am out of shape and kind of horrified that my bum and legs hurt after 20 minutes on the bike, but on the other hand I am proud of myself for biting the bullet and giving it a try. So far tonight I doing okay afterwards, so keep your fingers crossed I have not aggravated the DIV because I would like to try again on Thursday!

Dear Prudie Question

Article on Slate from last Thursday regarding someone with similar pain issues. Check it out at http://www.slate.com/id/2249388/

Someone else with the same problem

One of the most frustrating things about this is that I don't know anyone else with DIV. Saw another post today of someone with the same issue here http://universal-drugs.net/vulvar-disorders/has-anyone-been-diagnosed-with-desquamative-inflammatory-vaginitis-div-or-know-someone-that-has/

I feel really bad for her, but at least she has a diagnosis now so she can work towards a fix. That was the hardest part for me in the first several months is that no one knew what was wrong with me. I had never had anything wrong with me that wasn't easily identifiable or fixable so it was really scary. I had self diagnosed (gotta love google) with all kinds of horrible things. DIV isn't ideal as there is no cure or cause and only a hope for diagnosis, but at least I now have a name which is half the battle.

Not a good day ;(

Today, I have some burning and itching creeping in. It upsets me and I worry I will always be like this. And of course the more I worry the worse I feel. I am thinking the trigger today might have been too tight pants ...

Warm Weather!

The weather was beautiful this weekend! My boyfriend and I spent the weekend at the park--it was a ton of fun. Unfortunately the warm weather is making me nervous. If I at all sweaty in the "area", it start to feel a little prickly or sweaty. With a skirt I can get some breeze, but with pants (i.e. gym clothes) I get nothing.

Stockings

Today was a mostly good day with some DIV uncomfortableness showing up later in the evening. I think part of the reasons it was a good day was because it was a skirt day. One of the big changes I had to make were thigh-high stockings. They are kind of fun and my boyfriend appreciates them :) I use Hanes® Silk Reflections® Lace-Top Thigh-High Panty Hose. I found that buying a size bigger than I need lets me pull them high enough that they mimick real stockings. The only drawback is due to my sensitive skin I sometimes end up with welts if I wear them too many days ina row.

My History

My issues started shortly after sex with a new partner. I initially thought I had a terrible yeast infection. I was treated with diflucan and waited to get better. After about a month of visits and no improvement, I was tested for everything under the sun (diabetes, stds, yeast, etc.). All my tests came back negative. My practioner tried a variety of different treatments with no success. We tried lifestyle changes (cut out sugar, double rinising clothes, special toliet paper, white 100% cotton underwear, etc.). My partner was re-tested for stds--all negative. I kept getting worse and worse. The ongoing burning was so bad that I could barely sit a work. And quite frankly my mental health was beginning to seriously deteriorate.

My practioner referred me to a specialist. I was re-tested and subjected to a variety of new tests. We initially treated to get the inflammation down with steriods. We then tried clindamycin internally for two weeks. Initially that appeared to be a miracle cure--my pain went away, I got the DIV diagnosis.

Disappointingly, a month later we were back to square one as the burning, pain and discharge had returned. We then tried Vagifem and topical estrogen. That seemed to be working. I have now been taken off the Vagifem and am waiting to see what happens.

I wish I could wear pretty underwear!

I went shopping this afternoon and made the mistake of going into Victoria's Secret. They had a bunch of new underwear in all the pretty spring colors. Of course nothing in the store is 100% cotton and I am of course limited to only white. It is such a bummer--I feel like it is so hard to feel pretty, female or young with my boyfriend when all of my underwear are "granny panties".

I have been doing okay the last few days. I tend to be fine during the day, but with externa irritation starting in the evening. I put estrace on before I go to bed and then I am generally okay by the morning. I am so tired of this!

Welcome

I am starting this blog to help me work through issues involving my gyn health that have been percolating for about six months now. I also hope that it might provide some ideas or comfort for others experiencing the same issues, as I have found a total lack of information as I have been trying to work through this process.

My current (as it has changed a few times) diagnosis is desquamative inflammatory vaginitis, otherwise known as DIV. Basically it is atrophic vaginitis in women who are not menopausal. In my case the basical symptoms are yellow discharge and painful burning that comes and goes. I also seem to be having to urinary tract issues as well recently. Current treatment involves estrace cream and a steriod cream. My doctor just took my off of my Vagifem inserts about two weeks ago. I am really nervous about this since I was feeling good while using them and feel like my symptoms are creeping back without it. I am trying to give myself some more time before I start worrying too much.

I have found that to be one of my biggest challenges so far--to try not to let my worrying about this to become all consuming. Does anyone have advice on that?