Oh NO... Getting WORSE AGAIN?!?!?

Submitted by mulchfairy on December 9, 2012 - 6:23pm
Body: 

When last you heard from Mulchfairy (that's me), she had been using honey and apple cider vinegar, plus taking red clover capsules (800 mg/day) for about three weeks, hoping to avoid a repeat of the TERRIBLE yeast/fungal infection that ultimately sent her to Planned Parenthood a couple months ago (see my previous posts).

(Okay, dropping the "3rd person", now, and any attempt at humor...) I had thought I was "maintaining" fairly well, for the past few weeks... just a little soreness around the urethra, and very mild itching. The tailbone "split" still came and went, but not as badly. The vinegar (which I've been using straight) did sting a little, and sometimes the honey did, too... but not for long, and overall, I had the feeling they were a good thing. Can't tell about the red clover, as it's just two pills I take every day... I haven't noticed any effect so far. Tempted to take more, and see what happens.

But then suddenly, the day before yesterday, things started getting worse again... and fast. First the "split" that I get in the seam between my anus and tailbone, opened up again, and got all inflamed and painful. Next, stinging, burning, and deep, angry redness developed all around the vaginal opening and inner labia, and new "splits" opened, in the crease between the inner and outer labia. The skin of my outer labia, from the hairline inward, is increasingly covered with tiny red bumps, some of which are actually tiny holes. It looks (and feels) like the skin is being eaten away.

The thing that scares me most, though, is that my inner labia have swollen up again, to over twice their normal size... and this is only the second time I've seen that happen. They actually protrude between the outer labia, like little balloons... and they are so sore and sensitive that I tried to put on underwear this morning and had to take them off right away. I haven't been able to sit anywhere, till now... whether it's calming down a little right now, or whether it's just that I'm sitting on the bed, I don't know.

And all this has happened just in the last couple days. I've been trying to think what I've done differently. I did stop using the vinegar completely for a couple days, I think, except on the tailbone split... but I kept using the honey. I started taking probiotics around that time, orally and vaginally. I did talk to Christine, on Wednesday... but that was before things started acting up again. (I mention it only because I was fairly anxious, prior to talking to her, and frustrated afterwards, thinking of things I should have asked... so it counts as a source of stress. After I talked to Christine, I couldn't sleep all night. I want to make clear that she didn't do anything to cause me stress... it's just the way I react to things, and I can't seem to be able to do much about it).

Oh, and my period is now 10 days late. I could theoretically be pregnant, I suppose, but I'm guessing it's just more perimenopause... hormones, freaking out.

Yesterday and today I started using the vinegar again, twice a day this time... and the honey also. I've also inserted (and eaten) probiotic capsules, both days. I might have to dilute the vinegar a little, tonight... it was pretty painful, using it this morning.

I'm not expecting answers, just wanting to howl a little... I've been in tears, on and off, all day. I know this is a forum of mainly women, run by volunteers, and not a place to get medical advice. Heck, Christine can't give me medical advice, either, so I certainly don't expect it from you all, wonderful as you are. But I did wonder if anybody knows of a really good holistic or alternative-medicine practitioner, or barring that, a gynecologist they would actually trust, in the Washington, D.C. area? I'm just so afraid that it's happening all over again... and last time was really DREADFUL. I don't know what else to do, since nothing I tried on my own before ever really worked, that I can tell.

Thanks for listening,
Mulchfairy

Forum:

Christine

December 9, 2012 - 7:35pm

Hi Holly,

I'm sorry to hear you are suffering so! How are your vitamin D levels? There is nothing in the literature about vitamin D and the vulva specifically, but I have become very suspicious that it can play a significant role in vulva dystrophy. It is being implicated in several autoimmune disorders, including lupus and psoriasis. If you can get a blood panel done, that would be best, as overdosing on D is not a good thing, either. It didn't occur to me when we spoke because of all the fish oil you take, but after reading through your symptoms, it's the first thing that comes to mind.

Sending prayers for relief and the support of a good naturopath.

Christine

louiseds

December 9, 2012 - 9:19pm

Hi Mulchfairy

You are right in the middle of perimenopause, my dear, and your body is going nuts, like it has been invaded by aliens. Anything can happen, and usually when you are least expecting it. I went through a period of a couple of years when I had PMS like I had never experienced before. That may be bothering you too. It kind of went on and on, while my body was trying to menstruate, but couldn't. I kinda got used to it in the end, and eventually it just went away.

This will pass.

I bet you can't wait! Hope you can deal with the symptoms, day by day.

Louise

Aging gracefully

December 10, 2012 - 7:09am

You are so correct about perimenopause, Louise! It rages through you like a train on bumpy tracks!!
I am still in the midst of it myself, trying everything to alleviate symptoms I couldn't control as a teenager! I found that just trying to take whatever stress I had in my life out as much as possible seems to help a bit. I think the adrenal glands go into overload during this time, and there you are crying and raging, feeling insane and paranoid, and then you get prolapse for an extra treat and all it has to offer.
I hope you find some relief Mulchfairy; I am rooting for you!

Christine

December 10, 2012 - 9:47am

nah...this is something so much more than perimenopausal shifts. Deficiencies show up more at menopause, though, because of loss of the anti-oxidating power of estradiol. I have searched all the paths and the last one (maybe?) seems to be low levels of vitamin D. Anecdotally, I am on my 7th day of high levels of vitamin D (15,000 units/day) and have gone without my trusted honey for several days with *no symptoms*. I developed LS a couple of years after I moved into the Whole Woman Center, which is a darling little cave of a place with no southern exposure. I have always been a sun-worshipper and know how important the sun is, but I'm able to exercise in my studio and my writing and research work keeps me inside a lot. Little did I know I've been courting a serious vitamin D deficiency.

I mention the fish oil because while it's common to assume "fish oil" is loaded with vitamin D, like cod-liver oil is, it is often devoid of the vitamin.

Aging gracefully

December 10, 2012 - 10:24am

Would flax oil be a better alternative to fish oil? I usually alternate between them,and have found flax tends to help with the inflammation in my joints better. Or, am I totally off base here?

Christine

December 10, 2012 - 2:09pm

Well, we're talking about apples and oranges here, vitamin D vs. anti-inflammatory EPA/DHA.

Cod liver oil has been a human medicine for at least hundreds of years. I don't think it was usually given in daily doses, but mainly to treat illness. DHA, which is the essential part of the essential omega 3 family of fatty acids is what makes cod liver oil and fish oil so anti-inflammatory. However, DHA and arachadonic acid (AA) from omega 6 utilize the same enzymes as substrate. AA is the raw material our bodies use at the head of the inflammatory cascade, otherwise known as our immune system. If you're flooding your body with DHA from fish oil, you may be turning down your immune system, which is not a good thing. There is an ideal balance, which scientists believe is around 1:1 or 2:1 AA to DHA. So in this respect, I think it might be better to get plenty of the parent fatty acid, omega 3, instead of large amounts of the derivative, DHA.

Vitamin D has more hormone-like actions and is found in only a few foods. Sunlight causes this hormone to be produced in our skin when we expose large areas to the sun. Vitamin D receptors are throughout the body and deficiencies can cause cardiovascular, neurological, bone, and autoimmune disorders. We can now take it in pills, and as much as I dislike relying on pills, it seems a reasonable option for people who live and work inside. I wish so much I could be a gardener and work outside, but right now I am a gardener of a different sort. :-)

I think freshly-ground flax seed is wonderful as are organic pumpkin seeds, rich in omega 3, which I turn into delicious seed cheese. All of this - including the how-to's are in the new video!

Christine

mulchfairy

December 10, 2012 - 2:31pm

Hi Christine-- I am currently taking vitamin D daily, as part of two different calcium supplements-- so between the two, it looks like I'm getting 1,130 units/day. I don't know what to think-- so far as I can tell from what I have read online, that ought to be adequate, but...

Then again... in June, I moved here from Southwest Florida (a very sunny place, where I had a house with a lanai, and a garden that I worked in almost every day) to a tiny apartment in Alexandria, VA. So I DEFINITELY go outside a LOT less than I used to! I should also mention that because a couple people died of skin cancer in my family, I've been careful to wear high-SPF sunblock, for quite a few years now. Aaand... I'm reading now that wearing sunblock blocks vitamin D absorption. So I guess I COULD have a deficiency of it.

Anyway... I have some 1000-unit D3 supplement capsules here, and I just took 10 of them... or did I take 15? Dammit, I'll pay closer attention tomorrow. Added to my regular calcium supplement, that should bring me up to 11,030 units for today (unless I took fifteen... but if I did, I won't do it again. ;)
Also I went out and ran this morning; it's rainy and grey here now, a lot of the time, but I figured some genuine daylight would still be good.

So far, I have not improved; labia are still swollen, everything red and raw-looking... in fact, it looks like there's some ulceration at the opening of my vagina now... no wonder it hurts so much!!!! Also there is some whitish, curd-y discharge; that's something I don't usually see... but I've been inserting probiotic capsules twice a day for the past couple days, so it could just be some of the capsule, I guess... or sloughing tissue. Is it possible to overdo probiotic caps, honey, or red clover, do you think?

I'm going to go rest for awhile; I can't sit, really, except on my heels with my legs spread apart a little... and after awhile, I have to stop that, too.

I'm supposed to go to Florida on the 16th to see my mom and my son for a week... but if this doesn't improve, I'm thinking I should maybe cancel. Won't be much of a visit if I can't sit and visit with them, or participate in things without being in agony... I don't know. But it hasn't happened yet; maybe the vitamin D will kick in. Hope, hope!

Holly

Christine

December 10, 2012 - 4:12pm

Hmmm, seems unlikely you would have much of a deficit in D, but this is why a blood test would be useful. The only other thing that comes to mind is a milk allergy, which I believe can manifest as vulva symptoms in females.

As I've written about before, it has been commented upon in the early literature on the subject that vulva dystrophy often presents in "nervous" women. This suggests adrenal burnout to me, which I know you are aware of. In animals severe vulva symptoms are treated with melatonin, which points to the importance of addressing the sleep issues. It is all so connected.

I hope I've been able to give you a few ideas. Frankly, it sounds like a short-term course of corticosteriods might be in order to knock down the major inflammation. The body wants to be in balance, but finding that balance is sometimes a years-long effort! Stay curious!

Wishing you well,

Christine

NFP

December 10, 2012 - 8:15pm

You do have a difficult situation. I am just going to throw this out for your consideration. Have you ever thought of consulting " Angies List" for a woman GYN in the DC area? My understanding is that you can do an inquiry under the listing of physicians and get reviews on doctors or alternative medicine people. Good luck... Ruth

alemama

December 10, 2012 - 8:53pm

Some things that might help:
very very hot sitz bath with these things:
garlic
comfrey
nettle

Ice packs

Spread this on your vulva:
slippery elm
plain yogurt (remove when it reaches body temp)

Consider these things:
castor oil (cold pressed and as packs)
plantain oil
neem oil
comfrey oil
zinc cream (like burts bees)

and yes. stress can do this to you (and I know what you mean about being kept up doing the woulda, shoulda, coulda routine- I do that too). Try not to be too hard on yourself. This is your experience and you can't go back, you know? only forward.
and yes. hormones can contribute

and yes. I'm all about the vitamin D. Doesn't matter if you are in it every day and have a tan! you can still be deficient. It really depends on your ability to absorb.
We megadose our son (who is about 45lbs or so) with 40,000 IUs each day for months at times over the last 4 years and have not gotten anywhere near toxic ##s with testing.
We like the drops (you can get 4,000IUs per drop!).

alemama

December 10, 2012 - 8:54pm

drinking apple cider vinegar may help- get the real stuff with the mother

louiseds

December 10, 2012 - 11:57pm

Just letting you all know that I am still having a splash of diluted cider vinegar all over the bits of me that have folds, after a shower, before towelling off. I am hoping that it might make my skin more acidic, which would make it more hostile for bad bugs all over. I can now splash it on my vulva without any stinging.

Christine

December 11, 2012 - 9:14am

No one tells us that we become more alkaline on the outside too, but that is my experience. I have to use acv regularly on my right hand and forearm to keep a rash at bay that develops every time I use my rubber gloves. I have to use them to do dishes these days, as I've become highly allergic to the same Dr. Bronner's SalSuds soap I've used all my adult life. Need to replace my gloves, I know...I do rinse the inside of them with vinegar, which helps.

Christine

December 11, 2012 - 9:19am

...btw, Alemama gave me the courage to give up soap entirely on my body. I now use a few drops of essential oil in my bath and just soak. At the end I scrub my feet with soap, but that's all. This is a huge step for a girl who was taught a daily bath is sacrosanct. I try to bathe not more than every two or three days and use a drop of lavender essential oil (scientifically shown to lower LH levels) instead of deodorant. Underarm perspiration is a clear, odorless fluid that gets its smell from testosterone. Older women's T levels are so low that we really have very little, if any, odor. :)

Aging gracefully

December 11, 2012 - 10:33am

That is really interesting about the testosterone. When I worked in the nursing homes, our little ladies had a bath or shower once a week with a daily wash of the face and bottom. I don't remember using a lot of deodorant on them, and most of them were not stinky either! They would say,"I don't know why I have to take a bath, I didn't do anything!"
I started with washing my hair less, and then trying out all these different organic body washes that still seemed to dry out my skin. Do you use any kind of lotions?

hockeyMom

December 11, 2012 - 12:15pm

Hi MulchFairy,

Just wanted to say that I hope you find some relief - it sounds horrible. Twice in my life I have had vulva flare ups, which were not even remotely close to what you are describing, and it was bad enough. Both of my cases coincided with very stressful events (in one case my brother almost died from a brain aneurysm). I have contact allergies to some soaps and lotions, I have never figured out to what exactly but just avoiding most of them works for me. It seems like I reacted to (I believe) menstrual pads which I have used hundreds of times ... but I think the stress caused my immune reaction.

Anyway, for myself a short-term use of a corticosteroid cream did indeed knock back the inflammation enough to get a handle on it. Just my own personal account though. It was no where near as bad as what you describe.

I just wanted to send some sympathy your way - I hope things improve.

Vicki3

December 11, 2012 - 12:21pm

Hi Christine,
Just read your comment about taking high doses of Vitamin D and wondering how much is too much? I only take 1,000 units per day and thought I might be overdoing it but am certainly willing to up the dose if it helps.

Christine

December 11, 2012 - 1:39pm

AG, I only use my own herbal salves, not on my vulva anymore, but on my face, arms and legs. This is actually a very good place to experiment - finding herbs and oils that make the salve a bit more acidic. The reproductive age vagina is a self-cleansing organism, which I believe is reproduced with honey and vinegar. A nice soak in flower-essence water every 2-3 days is just right for me these days.

Vicki, I can't make any recommendations about dosage. Check out this doctor's (webpage), which is especially interesting because she talks about neurological symptoms and vitamin D deficiency. I have long-believed the same sort of oxidative processes that affect the brain also affect the vulva. Where else but the central nervous system is there a greater concentration of nerve cells than the clitoris and vulva? And who has experienced severe vulva dystrophy and would not agree that it's a problem with the nerve cells!

CK

Aging gracefully

December 11, 2012 - 2:39pm

I have been using the honey for some of the burning I get just inside my vagina with amazing results. The pain goes away almost immediately! And, I also get these clear secretions in abundance afterwards; must be the self- cleaning aspect kicking in. Thank you and all you ladies for such wonderful tidbits.

louiseds

December 11, 2012 - 8:07pm

Christine, in Australia I can buy rubber gloves made out of some other material, a slightly stretchy plastic, if your rubber ones are contributing to your rash. I am sure you could buy them in USA. You could also wear cotton gloves underneath the rubber gloves, or just make sleeves that you hook over your little finger and thumb before putting the gloves on, to protect your arms from the rubber. Let me know if you can't get the other type and I will send you a pair in the mail.

louiseds

December 11, 2012 - 9:28pm

I just remembered another product that I think has been helpful for settling this inflammation and cracking. It is a product called AquaEar, that is normally used for preventing and treating outer ear infections in people who get swimming pool water in their ears. It is an over the counter pharmacy item. It has alcohol and acetic acid (same as vinegar) in it. A few drops of this on the inflammed area seems to settle it. The alcohol mixes with the water in the ear canal and changes its surface tension, I guess, which allows the water to overcome the waxy surface of the ear canal and come out. In this bum crack area it seems to dry out the inflamed area. Perhaps that allows the acetic acid to penetrate and get to any fungus deep in the flaky layers of inflamed skin? Just use a couple of drops. If it gets to the anus it kinda burns!

BTW, it is great if your ear canals get itchy too, eg if you get soap or shampoo in them and can't wash it out. I have miniscule ear canals so this can be a problem for me.

Louise

mulchfairy

December 13, 2012 - 10:43pm

Just to let everyone know-- I saw a gynecologist yesterday. And she thought it looked like a fungal infection, externally at least... and she took samples to test for yeast and bacteria from inside my vagina. At my request, they also took a blood sample to check my vitamin D levels... though she said she believes there is little danger of overdosing, as most people in our society have levels of 20-40 (some unit of measurement) in their blood, and a level of up to 100 is safe. (But what if you're taking megadoses? Lots of things I don't know the answer to...) Anyway, I imagine I'm safe taking 10,000-15,000 iu of vitamin D daily, for awhile at least. And it'll be interesting to see what the tests say.

She said she is not convinced that I have an actual vaginal yeast infection, but thinks instead that I have an infection of the external skin, that has never been fully cleared, and that the external infection keeps "throwing off the internal balance".

So she prescribed me an antifungal/steroid cream to use topically on all the irritated skin, twice a day for two to three weeks. It's Clotrimazole 1% and Betamethasone Dipropionate .05%. If it goes away sooner, I'm to keep using it for a week past when the symptoms disappear... and if it doesn't, I'm supposed to make an appointment with a dermatologist. At least she hasn't prescribed Diflucan... YET. That will depend, I'm guessing, on what the test results say.

She also said (and I could tell she was trying to be polite but was pretty sure I was an idiot) that putting honey in the vagina was a really bad idea... because a) honey is a sugar, and sugar feeds yeast. Also b) that honey is antibiotic, and so it will kill the beneficial bacteria in the vagina. I told her that I had read and been told that actually, honey feeds the beneficial bacteria, so that they grow faster than the yeast, and wipe them out... and that I could refer her to articles... but I might as well not have spoken.

Christine, if you read this, and if you would be willing to post links to papers that have been written regarding the antifungal properties of honey, I would LOVE to be able to pass them along to this doctor, who is female, and young enough that she ought to still have a (slightly) open mind. (It really pisses me off when they treat me like I'm a fool, and I know I'm not). I looked for articles online, and found several that discuss it... but many of them I can't get into without subscribing or paying fees. The abstracts alone are interesting, though! Did you see this one, published in July, about the effects of heat and processing on honey and hydrogen peroxide and so on? http://www.ncbi.nlm.nih.gov/pubmed/22866051. I haven't read the actual article yet... but thought of you immediately! :)

I wanted to mention also that about 36 hours before the appointment, my symptoms started lessening slightly in severity, kind of in fits and starts, and then on the day of the appointment, I was yet more improved. I don't know whether to attribute this to the vitamin D (the doctor thought it might possibly be that), or some other factor I'm not aware of. But it almost made me not want to use the cream she prescribed. I AM using it... but with very mixed feelings. She told me also not to put ANYTHING (including probiotic capsules) in my vagina for the time being... and I don't want to confuse things, but I also don't want to develop an internal infection while I'm waiting for the external one to (hopefully) go away. Hope I'm doing the right thing... AAARRRGGGHHHH!!!!!

At least I'm in a LOT less pain than I was!! I wanted to let you know that, and to thank you all for your sympathy and suggestions. I come back and look at them, a LOT. :) I'll keep you posted...

--Mulchfairy

louiseds

December 13, 2012 - 11:50pm

Yes, it is hard trying to combine two different therapies, which can seem to be at odds with each other, at the same time.

I can see why she doesn't want you to do anything off your own bat because it will mess up the little trial that she is doing. Science-wise, she is right. Interfering with one treatment with something which *may* reduce its efficacy is probably not sensible.

You never know, it may work. With the state of your skin, in your position, I would give her treatment the best chance of succeeding for as long as you can bear it, but make sure you have ready access to her if it all goes pear-shaped and you need to stop the treatment.

When you consult with a medical doctor, the doctor needs to be your primary contact.

Louise

Christine

December 14, 2012 - 12:35am

There is lots of science on this subject, Mulchfairy.

Bifidobacterium is one of the major organisms that culture the vagina and if you google this and "lactobacillus" and "honey" you will find scientific articles proving that honey stimulates growth of these probiotics. It is all about which organisms crowd out the others.

Glucose pills are cheap and available at every corner drug store, but the reason I have never tried them vaginally is because they would undoubtedly stimulate the growth of pathogenic organisms, like candida.

I respectfully disagree with your doctor.

Christine

mulchfairy

December 14, 2012 - 3:26pm

Thanks, Louise-- and yes, I understand, and I have great respect for science (I was raised with it... but that's another story ;). So I DO intend to follow this doctor's instructions as best I can, and see what happens, without my further complicating and confusing the experiment. I just really, really hope I can avoid having to go through this AGAIN!! After 45+ years of my vulva and vagina hurting me, and not knowing why, and not seeming to have any control over whether it gets horribly worse, or better... well, I am just so, SO tired of it, I don't even know how to tell you.

But I keep trying to figure it out, and I'm learning things... and maybe one of these days, all the puzzle pieces will go "click"... and I will be able to spend the rest of my life on something positive, and valuable, that I can be proud of... not just on trying to function.

mulchfairy

December 14, 2012 - 5:16pm

Thank you, Christine-- and I respectfully disagreed with her, too-- not that it did me much good! Doctors know everything, you see... ;) As to the science, I figured there HAD to be articles out there... but truly, that science really isn't terribly accessible to the non-medically trained. It does seem strange to me that even relatively NEW ob-gyns aren't aware of it, though. I had hoped by getting a young one, that I'd get somebody who had received more up-to-date training... but apparently not. :/

Thanks, also, for the search suggestions-- I googled "yeast" and "honey" and "antifungal", and got a lot of testimonials and arguments, and a couple articles... but none that both a) addressed the right questions, and b) were available for me to read without shelling out $50! Research on health, like health care, should be available to EVERYONE, not just those who can afford it... okay, I'll get off my soapbox, now.

kiwigirl

December 17, 2012 - 5:15pm

Hi Mulchfairy, btw I love your name ;-) I came across this thread recently and felt such sympathy for you and admiration for your persistence and endurance while in the throes if such a painful sensitive condition . Sitting at the hairdressers relaxing amongst the busyness if this pre Christmas week with a cup of coffee eating Christmas cake . It's summer here but raining and gray outside but lovely and bright in here as I catchup up with your progress
It's been very interesting reading about your experiences and all other advice here . I would agree with others re having a blood test for your vit D levels , have you heard thd results yet?
I am wary of overdosing now as I wax taking Calcium before bed, last year , not even religiously , about 1000mgs I think , and had two doses of extreme right jaw pain and I had been having an achy right side of body . Anyway after some Chiro visits, was asked if I was taking calcium and it appears it had become toxic to my body and I didn't need it and wad told to be careful . I have since met a lady who comes from a medical family but swayed to the natural side who said I should have taken the calcium with magnesium and also it depends what type of calcium as plant one is better absorbed . That's good for thought as is all that had been posted above for which I thank you all so much for !
So much to discover eh , btw I try and take a midline for myself as I worry too much otherwise . I need more sleep and I'm an indoor person mainly who gets encouraged out . I am still happy using my homemade version of Bliss Balm ,internally twice daily and that seems to keep me comfortable otherwise dryness is an awful problem and was .
I had a thought while reading above,in regards to overkill , and dlthougb it's not thd same sensitive area the and principal could be applied . In my late teens and twenties I use to get contact dermatitis on my face after trying to fix patches of irritation on my face . I would end up with heat and skin felt burnt and tender . Often times before a big evening out. Stress was a big trigger, I learnt to handle it better and that less us best at these times .
Wishing you all the best to finding a happy answer for you dear Mulchfairy love kiwigirl xxx
And Merry Christmas to all xox

mulchfairy

February 2, 2013 - 6:25pm

Thanks, Kiwigirl, for your kind words and Holiday wishes! I spent the ten days preceding Christmas with my mom and son in Florida... and as she has basically NO internet connection, and an ancient computer, I was pretty much out of touch for quite awhile. It's fun to get messages that don't show up in my email... that I discover by accident, when I come to do something else. Like a surprise present!

I did get the results of my tests, finally. My vitamin D level is okay-- it was 47, and the doctor told me 30 - 100 is considered normal. Expensive to fiind out, though-- that one test cost $250! Yikes!

I also don't have chlamydia or gardenerella (sp?)... which is what I thought. Apparently they did find yeast internally, though, after all... because I got a call from the doctor's office that she had decided to prescribe Diflucan for me after all. This time, the prescription was three pills over six days.

The cream they prescribed for me, which was an antifungal/steroid cream with clotrimazole and betamethasone propionate, seemed to do weird things to my skin. It got extremely pale and very thin-looking, so that I could see veins under it... and my inner labia actually shrank to smaller than normal size, which was scary. Also after using it for two weeks (which is when I stopped), I was having bleeding from my anus, not just with stools, which I have had occasionally when constipated, but a little bit, all the time. No pain, particularly, just this little bit of blood. When I stopped the cream and significantly increased my psyllium intake to keep my stools really soft, the bleeding gradually stopped... and my labia and skin became more normal-looking again. I'm betting it was the corticosteroid!

So anyway, I used the cream for a couple weeks, and took the three diflucan, and it did drastically improve the symptoms... but there was still always a slight itching and burning in the area back near my tailbone, and sometimes a faint red line, that didn't seem to want to quite go away, a demarcation line between the "normal" buttock skin and the area where the rash had been. I noticed the skin was definitely changed there, also-- everywhere the rash had been, now looked thin, yellowish, shiny, and slightly wrinkled, like a burn area or something. After some time, the red line seemed to be getting wider and brighter, and the itching was getting worse and more widespread... so I went back, gradually, to using the vinegar and honey again. And it actually seemed to help... or maybe it was a hormonal swing. My periods are pretty irregular now.

Anyway, after that, I had a couple weeks of being pretty much blissfully normal and healthy-- no red line, no split or rash, no itching. I was applying honey and straight vinegar once a day, and I really thought I was onto something.

Then... I tried having intercourse. That's pretty much when things started to go to hell again. I was already worried about it throwing my balance off because of the alkalinity of seminal fluid, so I applied more honey and vinegar immediately afterwards... and we made sure the sex was very brief, very gentle, and very well-lubricated. But in the morning, where the effluvia had run out of me and down between my buttocks, there was a reddened area. I showered (no soap; I've given up on soap and even shampoo, at this point) and applied more vinegar, diluted, and by evening, things seemed to have settled down.

But then the next morning, suddenly there were two distinct and angry-looking areas of rash-- one around my urethra, and one around my anus. What it made me think of immediately was that something in my urine and feces must have irritated me-- whether that would be bacteria or estrogen metabolites or what, I'm not sure. But then... was there a connection with the sex, or was that just a coincidence? I really don't know. But once the rash reappeared, it started to get worse again.

I had a refill of the Lotrisone cream, and after a day or so of worsening rash, I decided to get it and use it briefly, just long enough to get things to calm down. I didn't like what the Lotrisone cream did to me, so I used it for about four days, then quit. It did lessen the rash, but not really the itching, this time-- in fact, if anything, the itching was worse when I was on the Lotrisone for those four days.

I haven't given up on the honey and vinegar-- in fact, I've gone up to twice a day, with maybe 1/8-1/16 tsp of honey inserted, and straight vinegar applied externally. The vinegar stings at first, but then it stops... and it definitely seems to help the itching. It seems to need full-strength vinegar to keep the rash from going completely crazy. But it's so strange... the vinegar can't seem to entirely get rid of it now, either. And I have some lesions now, that have ulcerated... don't know what they are. They sort of look like herpes, but not exactly... yet they're familiar somehow.

There are some signs of possible progress. This last time the rash reappeared, so far I haven't had the splitting between the inner and outer labia, or in the gluteal crease. And the inner labia haven't swollen up this time, either (so far... knock on wood!;) which I'm VERY glad of. In fact, for the most part, the vaginal vestibule and area around the labia has been fairly healthy-looking, after that initial inflammation around the urethra... at least compared to the area around my anus, and increasingly, back to the tailbone again. Those areas seems to be tougher for the vinegar to manage... maybe because the skin is thicker? I don't know.

I wonder if my epidermal skin (as opposed to vaginal skin) is also lacking some beneficial microflora, something that would ordinarily help my body fight off something like this. I'm guessing there's some kind of imbalance, or deficiency... or maybe an allergy of some sort. I've been told that deficiencies often show up at menopause, and I am definitely approaching that, it appears.

Anyway, I've made an appointment for Tuesday with a doctor who is a primary care physician, but also does acupuncture, and is part of a holistic/naturopathic/we-do-it-all type of office. She's also supposed to be knowledgeable about hormones, and to specialize in "bioidentical hormone replacement".... which worries me a bit. Not sure if that's a good thing, or not. I'm scared to see somebody else, and spend more money, (and this office looks likely to be expensive) but I really don't know what else to do. Allan has tried very hard to be supportive, but it is getting to him... yesterday, he said to me that he wished I could just be CALM, and stop obsessing, and just accept that maybe I wouldn't be able to do anything about it, and that I might just have to live with it. And that really upset me... because I am just NOT in a sustainable state, it seems to me. I know it would be good to be calm... but if ANYTHING is going to change, it seems to me I am going to have to be the one to make it happen... and I have pretty much run out of ideas. I have struggled with vulvodynia all my life... but it was never like this!

I know that once menopause has fully happened, things may somewhat settle down... but that could be years yet, they tell me. I've been really hot at night, a lot, and sometimes also I'm soaked in sweat. And then when the pain and itching is bad, I just rotate all night long, like a pig on a spit. Once in awhile I get a decent night's sleep... two nights ago was pretty good. But then last night was just impossible... and yes, I have been particularly emotional this past year, but I just don't seem to be able to do much about that, either. And I've been through a hell of a lot, too, this year... and it's still going on. Seems to me a certain amount of emotion is to be expected!

I'm both hopeful and apprehensive about seeing this new physician. I've known some really kind, caring alternative practitioners... and I've been in offices where it feels like you're just there to fork over money as fast as possible. Which kind will she be? And... will she be able to help me?

I'll let you know. Thanks again, and best wishes for a Happy New Year to all you wonderful people!

Mulchfairy

louiseds

February 3, 2013 - 7:08am

Hi Mulchfairy

Ooh, I feel for you, with all this happening. This may seem really weird, but there are ear drops called AquaEar, which are for putting in your ears after swimming to clean out the water. They have alcohol and acetic acid. I use them if my ear canals get itchy, which I think is because they are very narrow, and if shampoo gets in there it is very difficult to get out. It makes them sting a bit it they are inflamed.

Then I tried it on the blistery lesion near my tailbone. It stung, then stopped itching and calmed right down. It is summer here, and it has been a particularly sticky and hot January. I sometimes get prickly heat around my neck, and rashes under my boobs. I think it is my sweat (alkaline), so I have taken to rubbing vinegar on my itchy prickly skin. Gone, and it doesn't come back for a few days. I think my skin has gone alkaline on the outside too, and there is a yeast involved. I am off to the pharmacy tomorrow for oral probiotics. I might try giving my undies a vinegar rinse before hanging them out to dry too, just to knock off any yeast that might be on them.

I wouldn't try the AquaEar anywhere near your vulva!

mulchfairy

February 3, 2013 - 10:50am

Thanks, Louise-- yes, I am familiar with AquaEar... or rather, I know about making ear drops with rubbing alcohol and white vinegar. I've used it on myself, and on my dog. It's good stuff, and simple. I think I did try it on my tailbone lesions, years ago... don't remember what happened, though. Probably hurt like hell! ;)

Unfortunately, I think we're past the point where I can reasonably use something like that-- there's too much inflammation, and too much skin area involved. At this point, I think I will wait to try anything new till I see what this new "alternative" doctor has to say. Hope she has some genuinely good ideas, and not just expensive ones!

Based on what you and others have said here, I've been doing some reading about what happens to our skin, and in particular, its' pH, as we age. I found this article, which I thought was pretty good-- http://www.healthandgoodness.com/article/skin-ph-and-skin-health.html. I had forgotten the "acid mantle" concept... and various other things. No concrete suggestions there, but definitely food for thought. :)

Also I found an article debunking the new "keep your body alkaline by adjusting your diet and testing your urine" craze. I was once told to eat the juice of two limes a day, several years ago, and told that somehow that would magically "alkalinize" my body...which I now see is impossible. It might do other good things, though, I suppose... (and I DO like limes ;) . :http://sciencebasedpharmacy.wordpress.com/2009/11/13/your-urine-is-not-a...

Anyway... we keep learning, and hopefully, making progress. :)

I recently gave up all shampoo, as well as using soap on my body or hands-- unless I get into something greasy or dangerous, of course. And I've started pouring diluted vinegar-water over my head and rubbing it everywhere, after I finish showering, just in case it helps something. So far, all I've noticed is that my face seems to like it... I feel like my skin isn't quite as dry. Also I moisturize with a light, "natural" lotion, and jojoba oil, afterwards, just to keep the moisture in, in the wintry central-heated air of our apartment... and that seems to help (I don't put the lotion or oil on the inflamed areas, though... no need to unnecessarily confuse things).

I've tried ironing my underwear (also tried microwaving it-- this is a Really Bad Idea-- and boiling it, which is a pain). Not sure if I'm accomplishing anything, though, particularly with things as they are. I've been told that yeast is ALWAYS present in our bodies, and in the environment-- and that, as I think Pasteur said originally (and then Christine repeated to me), "it's not the germs, it's the terrain". If that's true, then I'm thinking I need to focus on getting my body strong enough to fight off the yeast... rather than trying to create a yeast-free environment. Will be interesting to see what Dr. Shiffman has to say about that on Tuesday.

Bebe

February 11, 2013 - 10:46am

Dear Mulchfairy, I think you described above a demarcation line around your rash. That and other symptoms you describe sound very much like what my husband and I have experienced and found very frustrating. I began to think he was allergic to me! because every time we had sex, his long-standing jock rash would flare up. It was also worse for both of us when I was having hot flashes and spooning made us both sweat and flare up. He developed a continuous plaque when he was working in Florida heat all day, and his buddies at work recommended showering the rash with as hot water as he could stand for as long as he could stand it. It worked. I have also used that and it helped me too.

We have tried different antifungal creams. One that works fairly well has Zinc Undecylenate and Undecylenic acid as its active ingredients. We mix it with a little hydrocortisone cream. I don't like to use it regularly (or anything like that regularly), but it serves for relief. It dries my skin a little.

Another thing a pharmacist suggested for my husband and me was to use miconazole topically only. We have also used it with success, but I am afraid of using it too much or too often because of the risk of possibly causing an internal imbalance.

I got through the worst of menopause with black cohosh and no longer have hot flashes, but I do generally "run hotter" than I ever did. I can sleep under a sheet all winter and have put the comforter away. I eventually found an estro-balance combination that includes B vitamins, selenium, date and magnolia extract, black cohosh, and soy isoflavones which works really well for maintenance. I may not need to take it any longer for hot flashes, but I believe the herbs and soy isoflavones are good for me anyway.

I have a bad practice of trying this and trying that without giving anything enough time to work or to decide which caused what result. Then I don't know what to use or what to blame. The things I mentioned above are things that I have used more than once and found them to work for me.

I think that, like my pop, dealing with yeast is a lifelong thing. Either one can be hard for couples to deal with. My husband has had many health problems and really has gotten very little sympathy from me over the years, preferring to carry on as the strong, silent type...so I feel foolish and selfish complaining. That's where you all come in. Thank you every one for being here when I'm feeling alone.

Hope you're feeling better, Mulchfairy.