Back from Dr with a diagnosis, finally! (very long)

[Guest guest]

Hi all,

I am back from phoenix, very jet lagged, but finally with a clear idea of

what my problem is, and some hope for treating it. Gordon davis is for

sure a really great doc, and all his staff were SOOOO nice - for the first

time I wasn't patronised, and I am now even more pissed off at the doctors

I have seen in England than I thought I'd be for reasons I'll go into ...

He has diagnosed me with

1) cytolytic vaginosis (overgrowth of the normal good bacteria which causes

an excessively acidic discharge that damages vaginal and vulval skin cells)

2) vestibulitis, or more specifically, a form called vestibular adenitis

(which used to be called focal vulvitis). This is a form where I have

focal points of pain and inflammation in and around my vestibular glands.

He says he thinks the prognosis is good for resolving both these problems.

So, my background and symptoms are these:

I am 28, and everything was just fine until nearly 2 years ago when I had

my first ever yeast infection. It was a truly excruciating experience;

first I tried over the counter diflucan which knocked it back about 50%,

and then it returned, wehereupon I used a 3d course of clotrimazole

pessaries which got it under control. But things have never been the same

since. I am left with a discharge that is almost normal, but is thicker

and stickier than it used to be, and this discharge has always felt

irritating (itching and stinging) when it comes out. I have generalised

inflammation of my labia minora, I have itching on my labia majora, some

clitoral pain that comes and goes, and vestibulitis-like pain on touch of

my posterior vestibule, high up, near my hymen. Until recently, I never

thought my symptoms were cyclic (though they do get a bit better when I

wear a tampon), but for the last two months I have been off all

medications, and when my period started the inflammation went right down (I

had stretch marks!), and it stayed down for a few days before getting worse

again.

I have been prescribed pretty much everything by docs who couldn't tell me

what I had. I have tried every known antifungal except ketaconazole

(nizoral), and none helped, except with creams and pessaries I tend to feel

a bit better while using them, but the problem comes straight back

afterwards. I have tried oral antibiotics erythromycin and penicillin

which did nothing except give me thrush again, however I did once feel that

i had a good reaction to clindamycin cream (another antibiotic), but I had

an allergic reaction to the cream and had to stop using it after 3 days;

when the burning subsided, my same old problem was still there.

SO, the day dawned for my appt wth Dr davis, and I thought I'd be all under

control. Instead i was sitting in the waiting room crying - feeling scared

and very vulnerable. Zinnia (administrative person) was really lovely and

made a special effort to come up and chat, and then Terri arrived so we got

to meet too, and i start to feel better.

Gordon davis took a thorough history (a novel concept for a Dr huh?), and

then examined me. What he saw was some vaginal inflammation (I have

previously been assured by 2 specialists that I have no vaginal problems),

and acetowhite spots (inflammation) at my gland openings - I forget exactly

which ones, but I think he said vestibular, minor vestibular and skenes

(can't remember if bartholins were involved or not). I have previously

been assured by a " vulval specialist " and " expert colposcopist " in england,

that my glands are just fine - no infection, though she never bothered to

do the acetowhitening test. Cow.

Then, when he and his staff looked at my wet prep, they saw cytolysis

(damaged epithelial cells) and lactobacilli overgrowth. What I really

appreciate is that they let me have a look down the microscope too - this

is important to me cos i'm a biologist, so if I don't see something for

myself, I tend not to believe it. Once they realised this they got all

enthusisatic and showed me a wierd yeast they'd found in someone else that

morning - looked kind of like a side-on view of a flying saucer. As for

myself, however, no yeast.

So, what he reckons the story is, is that probably I was predisposed to

developing vestibulitis from having been on the pill since I was in my

teens. I guess the yeast inf. and cyt. vag. then pushed me over the edge.

There is at least one study showing that women who have been on the pill

since their teens are more likely to develop vestibulitis. In addition, I

am presently on a low estrogen pill which is probably not a good idea since

vulval and vaginal tissue need estrogen to regenerate. He says that my

glands are certainly infected, but that the infection is secondary to gland

damage and inflammation, and that it is pointless to just treat by chasing

the infection, because one week they will be infected with yeast, the next

with bacteria, and so-on. My understanding is that the infections

perpetuate the inflammation, and the inflammation perpetuates the

infections. So, without tackling the actual gland damage and inflammation,

infections will just keep recurring.

So, what drugs am I on now? Errr, all of them ...

1) baking soda douches to get the cytolytic vaginosis under control.

2) climara estrogen patches for the next 6 weeks, to provide estrogen to

help my epithelial tissue regenerate. He prescribed these rather than

estrace cream because he thought that in my condition the estrace would

burn me.

3) ketaconazole (nizoral) to suppress yeast infections

4) zithromax (not sure how you spell this, but it is some variant of

erythromycin) to suppress bacterial infections

5) hytone (2.5% hydrocortisone) as an anti-inflammatory.

6) I also got some anusol pessaries which are another steroid, and I will

call him about progress in a couple of weeks whereupon he will tell me

whether to use them or not.

7) finally ... one less drug to take - I am no longer on the birth control

pill.

He says that, because I am otherwise very healthy, the outlook is good for

resolving this problem. I am not going to count my chickens because I have

had so many disappointments already, and i know that vestibulitis is a

difficult one to treat.

But, am crossing all my fingers and toes - I think that this is my best

chance yet, and i am so glad to finally know what is wrong. I have my next

appt in 6 weeks.

The reason I am so unbelievably pissed off at the docs in england is

because when i was back home on holiday in New Zealand a year ago, I saw a

specialist, margaret sparrow. She found evidence of cytolytic vaginosis,

and also some yeast. Because she found yeast she decided to treat me for

that first. By the time I had finshed the anti-fungal I was back in

England, and my problem was still there, so I took myself to the local

genitourinary clinic where I have seen 3 doctors including a specialist. I

said to EVERY doctor, that Margaret Sparrow had said she'd seen evidence of

cytolytic vaginosis. Every time, they would turn to me and say in their

most upper class tones " We don't recognise that as a cause " . I have been

told every time by them, and by the " vulval specialist " , Micheling Byrne

who I saw in London, that my wet prep looked normal. Now, i ask you - if

the vaginal environment is so acidic that cells are breaking apart, how can

this NOT be considered a problem???!!!! My vestibulitis has got worse over

the last year, and it is entirely possible that if I'd been treated for

cyt. vag. earlier, I would not be in such bad shape as i am now.

Ok, so will keep you all posted on any progress. When in phoenix i also

got to meet Robin, and Suzy's friend Ann - was SO lovely to meet you guys

in person!

Wishing everyone well ...

xxx