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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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What are your SYMPTOMS and what TREATMENTS have you tried?

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What are your SYMPTOMS and what TREATMENTS have you tried?

Post  Sesquipedaisy on Tue Sep 13, 2016 6:07 pm

Hello, all! I was diagnosed with secondary provoked vestibulodynia on Friday, and I've been doing a lot of research since then.

I know that this is more or less a diagnosis of exclusion, that vestibulodynia is often comorbid with other health issues, and that vestibulodynia itself is heterogeneous (i.e., women with the disorder often present different symptoms or may have different things causing their symptoms).

So I wanted to everyone both what their symptoms are, along with what seems to provoke their symptoms or make them worse, and what treatments they have tried, as well as whether the treatments were effective. I want to see if I can make connections between the type of vulvodynia, categorized according to symptoms and related health issues, and treatments that may be most effective for that type.

I can start with my symptoms:

I had pain-free genital contact and sex from 20 to 24, but last year I had sex that set off a painful episode that lasted two-three months. My vulva turned red (moderate erythema), penetration was painful (dyspareunia), and any contact with or pressure on my genitals felt uncomfortable (e.g., wearing pants or tights, masturbating). Then suddenly my symptoms went away on their own and I more or less forgot about it.

In late June, another painful episode started. It might have been provoked by sex, but if so I think there was a bit of a gap between the last time I'd had sex and when my pain and sensitivity started to kick in.

I have the redness and exacerbated irritation with contact still. I now also have urinary symptoms (dysuria) that come and go. Specifically, frequent urination, urgent urination, and a feeling of incomplete emptying with urination.

I haven't done much by way of treatments, but my doctor has started me on Montelukast. It is a mast cell inhibitor / anti-inflammatory. It's too soon to say whether it will work or not.

Sesquipedaisy

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  emalita on Tue Sep 13, 2016 11:31 pm

You can read more about my symptoms and treatments in the link in my signature (my symptoms are very different now that I'm healing - just haven't updated my post), but I wanted to check if you have ruled out allergies or irritations?

Here is a post that talks more about things to watch out for:

http://vulvodyniasupport.forumotion.net/t2299-good-place-to-start-hypoallergenic-products-temporary-lifestyle-changes

emalita

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  Sesquipedaisy on Wed Sep 14, 2016 1:30 am

emalita wrote:You can read more about my symptoms and treatments in the link in my signature (my symptoms are very different now that I'm healing - just haven't updated my post), but I wanted to check if you have ruled out allergies or irritations?

Here is a post that talks more about things to watch out for:

http://vulvodyniasupport.forumotion.net/t2299-good-place-to-start-hypoallergenic-products-temporary-lifestyle-changes

Gotcha, so your vulvovaginal pain was associated with an allergic reaction, (uro)genital infections, too many antibiotics, and/or overwashing.

If you don't mind my asking, was your inflammatory vaginitis accompanied by unusual discharge? My previous gyno thought I might have it, but I have never had any discharge whatsoever.

I've also never had a yeast infection. I was told that I had a UTI based off of a urine test when I went to a walk-in clinic about an unrelated issue (food poisoning), but my current gyno thinks they may have read the results wrong as I had absolutely no symptoms of it at that time.

I only wash my vulva once a day and just with water. I used to use a washcloth, but because of the irritation I now only use my hand. I've never really put any chemicals on it either (hypoallergic detergent, no douches or feminine wipes, never shave or wax). I will need to look into what kind of toilet paper I buy, though.

I have been on a lot of antibiotics this summer, but that was after my vulvovaginal pain started.

Just with this first response, I think it's easy to see how varied the causes and experiences of vulvodynia can be.

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  emalita on Wed Sep 14, 2016 2:31 am

Well, at the time I didn't think I had excessive discharge, but looking back now, I did have slightly heavier than normal discharge after the tons of antibiotics and yeast creams I was given. So in my case, the treatments for nonexistent infections created the discharge. It didn't start with my original source of pain.

Even though I'm not a fan of the specialist who diagnosed me with inflammatory vaginitis, I do agree with his belief that there is a whole area of flora imbalance that doctors don't know how to diagnose (inbetween a true infection and healthy flora - meaning that you don't have to have an actual infection to be painfully out of balance). However, I do realize that some women have pain that has nothing to do with flora or a "high estrogen demanding vagina" as he says.

I just wish doctors were better trained on this inbetween stuff because I honestly believe doctors assist in creating vulvodynia for some women. I guess they're just responding to our demands for a quick pill cure Wink

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  lindsey_taylor on Wed Sep 14, 2016 11:08 pm

Hello there. I am so sorry to read about your trouble, and I wish you nothing but the best moving forward. In 2013, my husband was stationed in England so we moved overseas from the United States (Georgia, to be specific). I had been taking Sprintec birth control at the time, but while over there, ran out. I was put on Ortho Tri-Cyclen Lo, which I had been on before with no problems (there are no Wal-Marts in England, and therefore I couldn't get the Wal-Mart brand of birth control). I started taking the Ortho Tri-Cyclen Lo in October of 2013. In April of 2014, I had my FOURTH kidney stone (and still to this day do not know if I actually passed it), and then had what I thought was a yeast infection. The doctor did a swab of the discharge, collected a urine specimen, and told me I probably had a yeast infection and also the kidney stone had caused a UTI. So I was put on Bactrim, Diflucan, and Monistat. One week later, I thought I was fine, but discovered that I had this terrible, burning pain when I attempted intercourse. This has been an ongoing issue ever since. I even found out in December of 2014 that that first swab I had tested for yeast? It was negative for yeast. Only showed white blood cells, which is a sign of either a) inflammation or b) infection. Of course after the pain with intercourse I went back to the doctor, and then went back and back and back again. I've been back in Georgia since February of 2015 and have been to my gynecologist countless times. I was recently (in August) sent to a "specialist" in Atlanta and diagnosed with secondary provoked vulvodynia. I have a neurologist appointment in October.

My symptoms include: Burning/stinging pain with penetration, and very frequently I feel a pinching pain at my labia when my panties or pants move any particular way. When air touches my vulvar skin/clitoris/labia, it feels extra sensitive, almost cold-like, but if I touch myself with too much pressure, there is a burning sensation. This has become gradually worse over time. Masturbation/clitoral stimulation can even be more pain than it is remotely worth. I also tend do have a white discharge which is thicker some days, thinner on others, but it looks like Elmer's glue and it tends to stick to my labia and dry and become even more uncomfortable. I also have a tingling/heavy sensation in my feet (the bottoms of my feet) which I NEVER had before this issue started. The burning pain is always there, whether I am menstruating or not (some women have reported relief of the burning with menses).

Now, on to what either I myself have tried on my own or what the many, many doctors I have seen have prescribed (none of which have helped):

Rounds and rounds of Diflucan
Monistat
Hydrocortisone cream
Flagyl
Triamcinolone
RePhresh gel
BalanceActiv gel
Boric Acid suppositories
Oatmeal baths
Baking soda douches and suppositories
Coconut oil suppositories
Yogurt (plain, no sugar) suppositories
Multiple rounds of feminine probiotics
Vaginal pre-biotics
Vaginal clindamycin
Vaginal metronidizole
Tioconozole
Wearing just loose cotton underwear
Swapping to all hypoallergenic products
A compound cream of hydrocortisone, estrogen, and clindamycin
A week of clotrimazole
Swapping birth controls from Ortho Tri-Cyclen Lo to Microgestin Fe back to Sprintec (I am currently on Sprintec).

I was recently placed on 9-days worth of the 3-day clotrimazole treatment, and then put on 21 days of vaginal clindamycin. I am currently in week two of the clindamycin and am meant to do another 9-day round of 3-day clotrimazole when finished with this. So far I haven't really noticed any difference at all that I can tell. I don't notice any discharge except the cream coming back out, but it's too soon to tell... I guess we shall see.

lindsey_taylor

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  Sesquipedaisy on Wed Sep 14, 2016 11:56 pm

lindsey_taylor wrote:I had been taking Sprintec birth control at the time, but while over there, ran out.  I was put on Ortho Tri-Cyclen Lo, which I had been on before with no problems (there are no Wal-Marts in England, and therefore I couldn't get the Wal-Mart brand of birth control).  I started taking the Ortho Tri-Cyclen Lo in October of 2013.

One theory is that "[s]ome women with Vulvodynia have a genetic predisposition that . . . affects their response to oral contraceptive pills" (cme.dannemiller.com/articles/activity?id=570&f=1). But one recent study suggests that "[f]or women aged <50 years of age, OC use did not increase the risk of subsequent vulvodynia" (onlinelibrary.wiley.com/doi/10.1111/1471-0528.12407/abstract). There is so much conflicting research about this condition, however, that I wouldn't discount the possibility of an association based on Reed et al.'s findings.


lindsey_taylor wrote: In April of 2014, I had my FOURTH kidney stone (and still to this day do not know if I actually passed it), and then had what I thought was a yeast infection.

Other posters on here have stated that they were diagnosed with vulvodynia after a yeast infection. There is a theory that vulvodynia is associated with an allergy to or inability to properly process oxalates, which are also the cause of kidney stones (google.com/patents/US6200562), but this hasn't been confirmed.


lindsey_taylor wrote: The doctor did a swab of the discharge, collected a urine specimen, and told me I probably had a yeast infection and also the kidney stone had caused a UTI.  So I was put on Bactrim, Diflucan, and Monistat.

Did the doctor look at the vaginal swab under a microscope or send it off to the lab? Did they also collect a urine sample to test for a UTI?

It would have been very negligent of them to put you on two antibiotics, which increase your risk of yeast infection, and simultaneously give you a yeast infection medication without being absolutely sure.

lindsey_taylor wrote: My symptoms include:  Burning/stinging pain with penetration, and very frequently I feel a pinching pain at my labia when my panties or pants move any particular way.  When air touches my vulvar skin/clitoris/labia, it feels extra sensitive, almost cold-like, but if I touch myself with too much pressure, there is a burning sensation.  This has become gradually worse over time.  Masturbation/clitoral stimulation can even be more pain than it is remotely worth.

All that is pretty similar to how I feel. Some days I feel the burning, pinching, or uncomfortable sensitivity all the time, regardless of whether anything is in contact with my vulva. Other times there isn't any noticeable pain, but if I try to masturbate or wear tight pants/leggings I'll feel uncomfortable again.

lindsey_taylor wrote: I also tend do have a white discharge which is thicker some days, thinner on others, but it looks like Elmer's glue and it tends to stick to my labia and dry and become even more uncomfortable.

Has any doctor mentioned inflammatory vaginitis? According to the Centers for Vulvovaginal Disorders, "The classic symptoms of DIV are excessive yellow discharge that is very sticky and dries on the vulva like it is glue. The discharge is typically not foul smelling. On the parts of the vulva where discharge dries becomes red, inflamed and itch" (cvvd.org/div). Inflammatory vaginitis also "typically causes vestibular inflammation and dyspareunia [pain with penetration]."

It sounds much more treatable than vulvodynia, based on the remission rates (ncbi.nlm.nih.gov/pubmed/21422855). You would be looking at antibiotics, corticosteroid therapy, or both.

lindsey_taylor wrote:I was recently placed on 9-days worth of the 3-day clotrimazole treatment, and then put on 21 days of vaginal clindamycin.  I am currently in week two of the clindamycin and am meant to do another 9-day round of 3-day clotrimazole when finished with this.  So far I haven't really noticed any difference at all that I can tell.  I don't notice any discharge except the cream coming back out, but it's too soon to tell... I guess we shall see.

Can I ask why you are on treatments for a yeast infection and a bacterial infection?? Do you have a definitive diagnosis for either? If not, putting all this stuff into your body could just make your pain worse.

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Re: What are your SYMPTOMS and what TREATMENTS have you tried?

Post  lindsey_taylor on Thu Sep 15, 2016 1:48 am

Thank you so much for your response Sesquipedaisy!

I have been on birth control for years, and I pointed out that even the Centers for Vulvovaginal Disorders references "hormonally mediated vestibulodynia" to both my regular gynecologist and the specialist I saw at Emory (I had not discovered the Centers for Vulvovaginal Disorders' website until earlier this year), and both of them very vehemently disagreed, saying that birth control isn't the source of my problem but the more I read, the more I am inclined to believe that coming off the birth control certainly can't hurt, and it can't hurt to see if this helps me.

Yes, the doctor I first saw in England when the issue popped up did indeed collect a urine specimen and send it to the lab. In fact, he sent ME to the lab so that I could urinate in a cup and hand it off to lab personnel. The UTI was a confirmed one, and I was placed on Bactrim for that. He did a vaginal exam that same day because of my complaint of a possible yeast infection. Based on my symptoms and the discharge I was having, he diagnosed me with a yeast infection and put me on two different antifungals, Monistat and Diflucan, because he was worried the Bactrim (the antibiotic) would cause my yeast infection to linger. Yes, he did perform a swab, but I NEVER knew the results of that swab that was done in April of 2014 until I obtained my medical records from there in December of 2014. I discovered then that that swab for yeast was NEGATIVE for yeast and NEGATIVE for bacteria. The only thing that showed from that swab was white blood cells. Since April of 2014 I have been tested and re-tested for fungal infections, bacterial infections, etc. Everything has been negative. Everything. Including that very first swab from April 2014 which I was certain was yeast.

Yes, your pain sounds very similar to mine. I do hope you find some relief, and soon!

Actually, I am the one who brought up inflammatory vaginitis (DIV) to my gynecologist earlier this year. I printed the information for the CVD and faxed it to her. She then called and asked to speak to one of the specialists at the office in Washington DC about the recommended dosage of each medication in the compound cream specifically used to help women with DIV. She then prescribed me a compound cream of estrogen, clindamycin, and hydrocortisone, which is the recommended therapy for DIV: "hysicians at the CVVD typically treat women with a combination of clindamycin, hydrocortisone, and estrogen in a compounded cream. While this is a “shot-gun” approach, in our experience this combination treats DIV much better than when we have used each individual medication or even when we have used a combination of just two of the three medications."

The cream did me no good at all, and in fact increased my irritation.

I am on treatments for a yeast infection and bacterial infection because my gynecologist seems to believe that I may have an underlying infection at the cellular level, and believes longer and stronger treatments will help eradicate it. So far, no good. Sad Bleh. I have not ever tested positive for bacterial vaginosis nor a yeast infection since this began in 2014.

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