Estrace cream for Vulvodynia - Menopause Message Board

Deda · 09-01-2005, 08:10 PM

babydog--

Here I am.

Yes, I've had vulvodynia for quite a while, and it's quite a long, long story, but I'll try to give you a summary of what I've been through...

Back in the mid 1980's is when I started getting it, (I was around 30) but at that time, it was cyclic, and it was only for about 7-10 days out of the month that I had pain. Mine was related to yeast. (As are many others with this condition) I would get a yeast inf. every month the week before my period, and the pain, and during my period it hurt even worse. Then period would be over and it all would go away,...yeast symptoms, pain, etc...all just poof!--gone. Weird, huh?
This went on for many many years. I would tell my Dr's, (gyn's) and they would tell me, "Some woman just get this, and we don't know what causes it...sorry". I never treated it with anything, and just grit my teeth for those days each month. Years later, like when I was about 41, I went on Zoloft, and everything was better...PMS, cramps, vulvodynia was even relieved. Not gone completely, but much, much better. As I recall at that time, even the yeast hardly was around anymore. I felt so well, so happy, that I started working, and felt terrific. I stayed on the Zo.. for about 5 years. It was about 5 years later that I started having yeast probs again--constantly had yeast infections. For a whole year, (at least) this went on, and I self treated (too many times) with OTC creams, namely Monistat 7.

UGH!! That's when the worst of the vulvodynia came on, I'm talking MAJOR, 24/7, keep me awake all night, crying, screamin' pain!! It felt like I had been rubbed with ground up glass. And my rectal area burned like a son of a gun too. I tried to hang in there...I'd go to GYN, I was in so much pain, and was crying, and begging, please give me something for the pain! How bout some Lidocaine gel/cream...just give me something...please..I beg of you! This one (1st one I saw) was heartless, she shrugged her shoulders and said, "some women just get this and we don't know what causes it". (Boy did I hate her for the longest time!) Another one checked me for diabetes and thyroid, and told me the tests came out "normal". I believed em. (found out years later they were wrong) I was missing work a lot,... girl I would be at work and would have to go in the rest room and take off my panties,

as that even made "it" hurt!!

So after about 5 months of it, I couldn't do it any longer, and quit my job. Who would've ever thought a pain "down there" could disrupt your life so much, huh?
I started searching for a Dr. that knew what this vulvodynia crap was...none of them knew anything about it. They'd heard of it, (some of them), but didn't know how to treat it, or what to look for. There has to be a cause of it!! So babydog, I just researched it like crazy girl! I joined the Vulvar Pain Foundation, and the National Vulvodynia Assn., went to support groups, and learned all I could. I found out myself about the Estrace cream treatment. You can find info from the VPF on that. The Dr. who pioneered that treatment...oh, they advocate it,...I can't think of his name, but I could find out for you later. I asked my GYN's for it, early in the beginning when it got bad, and that's the only thing they were more than happy to give me...1 tube with like 6 refills. So I kept going from one gyn to another, and a urologist too. I had bladder symptoms with it as well, and thought I might have had interstitial cystitis. I went to the bathroom constantly and could hardly get any pee to come out. I went to at least 6 GYN's and ALL of them would check and say, "No, you don't have yeast". I kept insisting that I did, I KNEW I did, as I would see it in the toilet at times. (Weird, but hardly ever on my panties). Finally, after a lot of prayers, I found this fantastic Dr., (he is a uro-gyn), and he was very knowledgable of this awful disorder. He did a very thorough exam and found I had a resistent type of yeast called "Glabrata", and I also had the reg. candida albicans....those stupid Dr's!

That glabrata is tough to get rid of! It took us only 2.5 months...some woman take forever to get rid of it. And get this, ...you know how you get that? From using Monistat over and over again, (like I did for that year). What it does is, it "kills off" all of the normal yeast, (the albicans), and then the glabrata, (which a lot of us already have small amount of that in our vag. cavity) takes over. It is very painful. So we treated that yeast with oral antifungals, (Nizoral) and Terazol 7 cream, (prescription) 2 times a day, and I put myself on an anti yeast diet for 2 weeks, I was SO very desparate to get rid of it! Thank the Lord, it DID go away. Well, the bad burning went away, but I still continued to have some horrible pains. Stabbing pain, strong pins and needles pain, heat, total numbness, etc. At the same time, I was getting a lot of these other funny little symptoms...like pins and needles in my hands and feet, burning in my fingers and toes, and lots of other things too. Was going through perimenopause at that time too...was not a happy camper, that's for sure!

I did lots of research, and kept checking the thyroid boards, since that ran in my family. I would read a few posts on the board here, and think, "no, not that...I haven't gained a lb" But I kept going back to that board, and one night went there, and I must've been up all night long reading from that thread at the top of their index page, "Let's post our stories..." Then I knew for sure that I had it, and went back to my GP, and got it checked, and yes I did have it! Started treatment, and the vulvodynia started improving slowly. I would have a painfree day here and there. After about 4 months on treatment, it was gone!

Well, it still comes and goes, but for the most part, I'm pain free. But if my levels are too high, or too low, it's painful again. From what I've read, it never goes away completely, but you can get it in remission. I still have to be careful with taking care of it. I watch my diet, don't eat many yeasty foods, eat yogurt daily, take acidolphilis 2 times daily, etc. I have to wear really comfy soft panties too, if the leg elastic is too tight, it causes pain. I also use the Estrace cream about 2 times a week, and I rub it directly on my vulva.

This keeps the skin "tougher", healthier.
A lot of woman get this stupid condition, at any age. I've even heard of little girls that have it!

But it seems to be most common in our age group. (I'm 50 now)..when we are going through these hormonal changes. And there seems to be many causes, but from every thing I've read, and the board I belong to for vulvodynia, hormones seem to be the biggest cause...and yeast!
I'm happy to say that I haven't had a yeast infection for 2 years and 4 mnoths now. I mean, like a full blown infection. Sometimes I can still see a little yeast starting up, and I may put in 1 supoository at bedtime, and rinse down there with a tree tea oil/water solution. It never gets bad, and seems to just go away. Diet too...if I overindulge in sweets, I see it again. I know how to avoid it now. One thing for sure tho, babydog, is I CANNOT use that Monistat, or any of those OTC creams!! They burn me!! I think some of us are allergic to it!
Well, I better go,...if you have anymore questions, let me know. I hope this helps you. There are vulvodynia groups/message lists. There's also a great book called "The V Book". My heart goes out to you, and I hope you can find a way to get your case of it under control. BTW, do you have a thyroid disorder? (Or anyone in your family?) See, I also have Hashimoto's, which is an autoimmune disease, which causes hypothyroid. They have seen that many woman that have vulvodynia, also have other autoimmune diseases...fibro, lupus, thyroid, etc.
God bless...
Deda

babydog · 09-02-2005, 07:21 AM

Hello Deda

when I read your post I feel as if I am reading my own medical history. I have a thyroid check every year but they always come out in the normal range. BUT I do think I have fibromyalgia although I have never been diagnosed. I get a lot of muscle and tendon pain and peri has made that worse.

I too have been suffering with this scourge since age 30. It did begin with recurrent yeast infections. I don't often get a yeast infection anymore gratefully (went almost 2 years without one). But I did get one this June. I often get them in the summer when the humiditiy is high. I take Diflucan and combine it with monistat 3 or monitstat 7 and that knocked it out this summer!! The condition has waxed and waned over the years. I too used way too much monistat which probably contributed to the problems. But I kept getting yeast infections because at the time I was taking antibiotics for cystitis!!

I did have laser therapy of the vulva which did not help.
A year later I was given sinequan which is an antidepressant and that did help imensely. But I gained a lot of weight from it so I had to stop. A year later the condition was back.

I know about the National Vulvodynia Association. I send my annual contribution every year. I even get notices of meetings in my area. I do not attend. Deda quite frankly I try my best not to think about this problem because it literally ruined my life. Just reading about it makes me very upset.

I generally do not have much pain or discomfort in general now. Right now I feel completely normal. But intercourse is pretty awful. It seems so tight! The pressure on my bladder!! And then when I pee it burns and it seems I get a fissure in the lower part of the vaginal opening.

The pain became very bad in the last few months. But I recently started on Paxil for other peri symptoms (anxiety) and the vulvar pain has been reduced a great deal.

I think that what I need is this cream you describe because I feel the skin just cracks very easily. Do you find that it helps with intercourse???

Is this something I can get from my GP or do I need to see a GYN? My GP knows about my condition. I hate going to a GYN because I have been to so many over the years and they just seem clueless and much more concerned over their pregnant patients. My GP runs all necessary blood work, does my pap smear and even ordered a pelvic sonogram to check for fibroids, cysts, etc. She also prescribed the paxil for me and takes care of all my other health issues although I must admit getting her to understand this condition has been a chore.

What dosage or strength of the Estrace are you on again????
I have an appt with my GP this Wed for my pap test. Would like to discuss this problem with her then!

Deda thank you so much for sharing your story. Believe it or not I think this condition is much more common than you might believe. There was a news report on my local station a month ago of women who complained they felt like there was broken glass in their vagina. These women were helped tremendously by physical therapy! A lot of women are speaking out today who 2 generations ago would have just suffered in silence.

Thanks again.

Deda · 09-02-2005, 01:40 PM

Hi there babydog--

This will be a shorty, cuz I have a haircut appt. soon, and it's a 30 min. drive from here.

I'll try to answer a few of your questions and then I'll write more later.

Your GP sounds like a very good Dr. It seems like usually you would have to get a script for Estrace cream from your GYN, but, it would not hurt to ask your GP anyway. She may be nice about it and give it to you.

You can look up the Vulvar Pain Foundation, and they should have some info about it, and maybe you can print it out and give it to your Dr.

I'm looking at the box it came in right here, and it says "Estrace 0.01%" It is Estrodiol. There is another type that they gave me at first which was the wrong one called "Premarin Cream". You want "Estrace" cream.

The protocal is to apply it on the outside...you know..the whole vulva area, the vestibule, labia, etc. You don't need to use gobs of it, but about 1/4 inch. And rub it in real good. Put it on after you shower or bathe everyday, so it won't get washed off.

babydog, I used to get those fissures too, and I don't get them anymore. The Dr. said that the reason I got those was from the yeast degrading my skin. My skin was ruined down there! I think that I read with some women, the skin just can thin out there from low Estrogen. I think I also read that even if you take Estrogen orally, that it might not get enough to that area, that applying it directly on the skin there will help. It supposedly make the skin thicker there.

There is a woman on one of the Vulvodynia boards I go to that had vvd severely for 10 years, and she swears it was the Estrace cream that healed it. Hers has gone completely away, and never came back at all!

babydog, I'll post you more later tonight, have to go get showered and get things ready.

Have a good day!

Deda

babydog · 09-02-2005, 05:54 PM

Hello Deda

Thanks so much for taking the time to respond. I am so excited.

You have given me hope that maybe I can beat this thing.

Please pray that my GP will give me a chance and give me an RX for estrace. I just can't wait to get started.

Even if she doesn't give it to me, I feel as if I can now go to a GYN with an agenda.

God bless you!

Deda · 09-02-2005, 09:09 PM

babydog--

Hi, I'm back. I know what ya mean about trying not to think about it, girl! It is the weirdest disorder, isn't it? Want to hear something weird...I was able to have intercourse without terrible repurcussions. In fact, it could be hurting like crazy beforehand, and no pain DURING intercourse!

Now is that weird?

I'm wondering if you are having some pelvic floor muscle problems now, as you said it feels real tight during intercourse. Some women, after having vvd for a while, start having problems with that, due to clenching as a result of the pain. After I was healed of that bad infection, and going through the worst pain for 2 years or so, I found that I was clenching those muscles a lot down there. There are some physical therapists that actually specialize in treating the pelvic floor muscles, and I went for a couple of visits. I started doing some kegels and deep breathing, learning how to relax those muscles. It did help a lot.

babydog, please, the next time you have your thyroid tested, please get the results back, and go post them on our thyroid board here. The reason I'm telling you this, is they did test my thyroid, (but they did not do a full thyroid panel, but what did I know then...), and now when I look at those results, I know I was most likely already hypo/Hashi's. My TSH was 4.4 Well, according to the American Assn. of Clinical Endocrinologists, and all the other big Thyroid Organizations, that is NOW considered hypothyroid, needing treatment. They have now narrowed the range, BUT most Dr's and labs are not following this new suggested protocol. A few are tho. My TSH was that high 2 years before I actually got the full blown vulvodynia. If only I had been starting treatment then, I probably wouldn't have got that bad resisitant yeast infection, and then the big full blown case of vvd. So make sure about that...as they now suggest treating anyone whos TSH shows at least 3.0 or higher. Also, I have/and had a lot of Fibro symptoms as well, which a lot of Dr's now think Fibro is really nothing more than untreated hypothyroid, or undertreated.
I also found out that my aunt, (mom's sis) who also has hypo/Hashi's went through vulvodynia herself, the same time I was a few years ago. Get this, her's was not pain, (lucky), but SEVERE itching 24/7! And my endocrinologist last year told me that in her 30 years of treating women with thyroid diseases, she has seen many women with vulvar pain.
Yes, it's great that women are now coming out of the woodwork and talking about it. I think the Internet has helped a lot.

And these great boards! I also found out one of my really good friends, (here in this little town I live in in Ca) has it too! Hers is of a vascular nature, but she is also in menopause! I think these things become a lot more common with women in their 40's on up. (Aren't we just so lucky?)

Well, I'm glad to hear that at this time you are pain free. I can go months without any pain there, and then one day for whatever unknown reason, it will start hurting again. I think it's when my thyroid levels are off.
I will pray babydog that the Estrace cream helps you. Be a little patient, ...they say it can take up to 6 months before you notice a differance..but I noticed improvement in about 2 months. I was very consistent with applying it daily, and now I just do it 2 x a week for maintenance.
Hope your Doc will give it to you, and that your insurance covers it. (Its like 75.00 a tube, which kind of surprised me)
Let me know what comes about for you, and good luck girl!!
Deda