Log in

I forgot my password

Latest topics
» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


What are your SYMPTOMS and what TREATMENTS have you tried?

View previous topic View next topic Go down

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

Posts : 6
Join date : 2016-09-12

View user profile

Back to top Go down

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

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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.

Sesquipedaisy

Posts : 6
Join date : 2016-09-12

View user profile

Back to top Go down

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

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Posts : 57
Join date : 2016-06-06
Age : 32
Location : Georgia, United States

View user profile

Back to top Go down

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.

Sesquipedaisy

Posts : 6
Join date : 2016-09-12

View user profile

Back to top Go down

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.

lindsey_taylor

Posts : 57
Join date : 2016-06-06
Age : 32
Location : Georgia, United States

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum