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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 3

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


Please help

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Please help

Post  LadyDi44 on Wed May 20, 2015 9:21 am

Hi, my name is Diana. I am SO grateful to have found this website. Thank you in advance to anybody who takes the time to read and/or respond to my post!

I'm a 19 year old girl who began feeling the effects of Vulvar Vestibulitis (VV) a little over a year ago. I had developed what would end up being a chronic yeast infection due to a change in Oral Contraceptive (OC) -- this alteration in hormone levels has been linked to developing/maintaining yeast infections. My gyno says that both the OC and yeast infection have been linked with VV, so it's not a big surprise I developed VV. I am currently COMPLETELY OFF birth control for 3 months now, but have seen no change in my VV pain.

I have a boyfriend of over 3 years whom I love deeply and owe my life to. We had a year and a half of an amazing, painless, passionate sex life and then we both went away to separate colleges. Since developing VV, sex has been painful every single time to the point of making me lurch to throw up from how painful intercourse is.

My VV hurts upon inserting anything into my vagina -- fingers and tampons included -- but all I care about right now is being able to have painless sex. My boyfriend and I are both home for the summer break and it breaks my heart that he and I are practically giving up on being intimate with each other. I am falling back into a slight depression that I know too well from already living with a depressive/defeatist mind, and I am afraid that I may never be able to have spontaneous, expressive, and loving sex again. My self esteem is at an all time low. PLEASE help me with any additional suggestions for my condition!

My background:
Likely cause -- OC hormones and chronic yeast infection
Treatments failed -- Lidocaine gel (slightly reduces pain before sex, but still unbearable)
Treatments to try -- Cognitive Behavioral Therapy, physical treatment, oxalate diet, coconut oil + desensitization, acupuncture, and Saginil gel (if I can get it)

PLEASE do let me know anything I may be missing? Whatever might work, I am eager to hear!!!

LadyDi44

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Re: Please help

Post  sgw11 on Wed May 20, 2015 10:45 am

Hey LadyDi44,

I'm very much like you, I'm 22 years old and have had vulvodynia for about a year and a half now. I always had pain free sex in my previous relationship, and also with my current boyfriend until one day I just couldn't do it. It felt like I was being teared apart. I had continuously been to the doctor with what I thought were UTIs or thrush. The doctors continuously took swabs and urine tests. Nothing ever came up but they put me on antibiotics. Eventually I was on a preventative antibiotic for UTIs, even though nothing ever cultured except for one time. I've read that overuse of antibiotics can lead to vulvodynia so I assume that's where I got it from. I finally got referred to a specialist and got diagnosed with vulvuodynia.

I got put on an amitriptyline cream which made it fully go away within a month or so, so I stopped using it after 2 months. Unfortunately I thought this was what I was meant to do, but apparently I was meant to use it for 6 months non-stop. Just a bit of miscommunication I guess. Anyway so I went back on it and have been ever since. The pain is bearable, I can have sex with only pain on initial penetration. It will get better. I've also been on Lyrica (pregabalin) but it didn't do anything for the pain so I went off it. I also tried PT but the physio said mine wasn't due to problems with the muscles because they felt fine. I still did it for a few months and it did a little bit, but because mine was due to oversensitivity of the nerves PT wouldn't help much.

I have just finished three sessions of laser treatment. It's a new technique that hasn't had much research done about it but I had access to it so thought I would give it a go. Unfortunately it hasn't done anything so I'm back to the drawing board. I also just ordered some Saginil online, it's expensive, mainly due to shipping, but I'm willing to try anything.

Remember you are not alone. Feel free to message me anytime. I know it's hard and so easy to get down about it, when all you want to do is have pain free sex and please yourself and your partner, especially because we are so young! We shouldn't have to deal with this! No one should.

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Re: Please help

Post  LadyDi44 on Thu May 21, 2015 12:10 am

Thank you so much for taking the time to read and reply, sgw11! Smile I feel so much better just by knowing I am not alone on this. You are right, it sucks to have this at such a young age, when we are just beginning to explore our sexuality. Please do let me know how the Saginil works for you!!! I am hopeful that at least one of the possible treatments will help my pain, as you said yours did get some relief. I went out and purchased coconut oil and apple cider vinegar, because they have been said to help these things... plus I am slowly but surely cutting out coffee.

I am seeing my gyno on Friday to tell her about all that I have found online and to see what she recommends I try first, given my symptoms and possible causes. It is frustrating to not be able to go to your doctor and have a sure cure, but all I can do is hope for the best. Thanks again for your reply, sgw11! What kind of vulvodynia do you have? And for when you do have sex, what kinds of condoms are okay to use?

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Re: Please help

Post  sgw11 on Thu May 21, 2015 12:34 am

I'm glad I could be of assistance. I'll keep you posted about the Saginil. I have provoked vulvodynia. I was always able to use condoms prior to diagnosis, but now I avoid them when possible. I'm on the pill so my boyfriend and I don't use condoms. We have also started to use coconut oil as lubricant which hasn't seemed to make much of a difference for me but it's definitely worth giving it a go. When we do have to use condoms, like after I've had my period and haven't been taking the pill for enough days for it to be fully effective, we usually use the Skyn condoms. They are latex free and I've found them to be the least irritating. When we use condoms we use the KY jelly lubricant, just because I'm not sure if the coconut oil affects the strength of the condoms. Using condoms definitely hurts more, but I can still have sex. Of course if it hurts too much then we stop. It's so important for you to listen to your body, and of course your boyfriend should be understanding and supportive. It does make me feel bad when we have to stop. I just get so frustrated about it!

I have also been taking calcium citrate tablets but they haven't seem to have done much for me, but I know a low oxalate diet for some women helps them significantly. My mum is an OBGYN, so it's always nice to have her to talk to. She said some research has just been published about applying numbing cream, either 5% lidocaine or 5% emla, at least 4 times a day, so basically you just do it after you go to the toilet or something, and also before you have sex. She said that after a period of 6 months, subjects found an 80% decrease in symptoms. So that is something to try too. I'm going to give the Saginil a go first, whilst also continuing to use amitriptyline. And if that doesn't work, I'm gonna try the numbing thing.

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Re: Please help

Post  mikan92 on Thu May 21, 2015 7:00 am

Hey!

I'm 22 and have been feeling the symptoms of provoked vulvodynia for a few months too! It is a horrible thing to go through:( Like sgw11, I think my problem is mainly due to over-sensitivity of nerves from a suspected tissue trauma so my main management is to cool down the nerves.

I've been on saginil gel for a few days after reading a post by a lady who got relief from the gel. Tbh I don't really feel much difference at the moment from using it, but I think my condition is slowly improving and hopefully saginil gel is helpful. I'll keep you updated and would like to hear how the gel work on you Smile p.s the shipping fee is incredibly expensive, so I got mine on ebay which is cheaper.

But I don't think saginil gel is an anaesthetic so if you are struggling with the pain maybe you should use lidocaine. I have used the ointment form for a few weeks (emla stings me so much!). At first it stung (better than emla) and there was a burning sensation which went away after a while. It did help to numb but I could still feel pain & uncomfortable sensation of numbing. After using for a couple of days it didn't sting or burn me anymore, the pain level definitely decreased significantly after use. Now that I stopped it and switched to saginil gel, I do feel that the pain is back a bit but not as bad as before. So I think lidcoaine is a good for you if you are suffering a lot of pain.

I think calcium citrate helped me, at least that's when I started to feel an obvious reduction in pain. I don't take in high doses though, only 400mg per day atm. Be careful some supplements can give you constipation (what I am struggling with right now) so don't take too much at first! I think this is worth a try esp if you suspect it's a nerve sensitivity issue.


And remember to do the routines if you have not done yet: no soap no shampoo whatsoever, only use water to wash the area, cotton underwear, no tight clothes like jeans etc

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Re: Please help

Post  A2015 on Thu May 21, 2015 12:43 pm

Hi LadiDi44, sgw11 & mikan92

I am also 22 and suffering with a very similar situation & symptoms.

My story is:
I never had any vaginal problems whatsoever until Jan 2012.
I slept with my then boyfriend unprotected & took the morning after pill. A few days later, I had redness, soreness, swelling and unusual discharge. I was found to have Yeast & Bacterial Vaginosis infections (given Clotrimazole pessary & Metronidazole antibiotic) and was put on OC Microgynon.
The infection symptoms cleared (discharge, itchiness), but Vulvar Vestibulitis symptoms remained (vestibule redness, inflammation, sore to touch, a discharge with a different, but not unpleasant, smell to how it was). Over the next 1.5 years, this continued without relief. Sex was possible but very sore and often triggered more swelling, sometimes fissures & a full on infection (Yeast or BV). I would also get full on infections if I went on holiday with a damp bikini etc. These would be treated (with Clotrimazole or Diflucan) but the persistent VV symptoms continued.

I was seen by around 10 doctors/nurses at London St. Mary's NHS Jefferiss Wing Clinic & referred to a Vulval Specialist. He did the Q-Tip test and prescribed Lidocaine to apply every day for 6 months to 'train my mind that I wasn't in pain'. I chose not to do this because it would only mask the pain & it was not in my mind. I saw a private gynaecologist (who carried out more sensitive testing, for more strains of bacteria than the NHS). Nothing was found.

Many times, I asked if the pill could cause this and ALL doctors said no.

By July 2013, after suffering for 1.5 years, I forgot what it felt like to have no pain there, it frustrated & upset me hugely. My boyfriend was very patient, but I was desperate to be back to normal. In desperation, I decided to come off Microgynon. Within WEEKS, ALL my symptoms had COMPLETELY gone. I couldn't believe it. The vaginal tissues returned to their healthy colour, the inflammation went, my discharge went back to how it used to be (I had forgotten the natural smell it used to have), all pain on contact was GONE. For the next 1.5 years, I had a completely normal sex life using condoms and never ever had to think about any pain or discomfort, no infections either. I didn't have to consider why this resolved things for me, because I naturally assumed the Pill caused it and therefore I would never go on the Pill again.

Now in Jan 2015, I slept with someone new using condoms with no problems. I then had sexual contact with someone else & the exact same circumstances have repeated themselves — this time without any hormones involved (no morning after pill, no Microgynon). I developed a Yeast & Bacterial Vaginosis infection which have been treated, but I now have the same Vestibulitis symptoms I suffered with. It's like a nightmare repeating itself, and I can't believe it is happening.

My symptoms are:
— Redness of the vestibule, the whole area surrounding the vaginal opening
— Inflammation, subtle swelling
— Stinging, raw, soreness when touched
— Discharge has a slightly different smell, not unpleasant but not as it was

For anyone who has yet to try coming off the pill, try it. It did completely cure me in 2013. However, if this works, be aware (as I wasn't) that this doesn't mean one is resilient to VV returning following an infection.

I am trying to remind myself that my body DID completely heal. I WAS cured of this. I remember thinking at that time that the tissues felt so inflammed/sore that it felt like permanent damage, that it would never be back to normal. But I DID go back to normal.
But I am very afraid this time, as there is no Pill for me to come off. I do not want treatment just to 'manage' the symptoms, I want to be fully healed again, as I was, and I feel very scared.

I am seeing a Dermatologist next week (with experience in genital skin conditions) so I will see what is suggested then.

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Re: Please help

Post  A2015 on Thu May 21, 2015 12:56 pm

To add:

I was given Diflucan (Fluconazole) many times during those 1.5 years of VV (sometimes 3 to take over 9 days) — this did not work.

This time round, I have done the anti-Candida diet + probiotics for the past 3 months, in case this could relieve symptoms if it was a yeast issue — this also hasn't had any effect.

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Re: Please help

Post  sgw11 on Fri May 22, 2015 10:05 am

I also did a month long dose of fluconazole but nothing helped. I'm also booked into see a dermatologist who specialises in vulvar conditions, but not until July because she's insanely busy. Can you please let me know what the dermatologist says for you? I've heard that they've been getting better results than some gynaecologists. I've been on the pill for a very long time, since I was about 16 or so, but I haven't considered coming off it, I just find it hard to believe that it would be the cause of it, because I've never had any problems with it over the past 6 years. How long were you on it for?

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Re: Please help

Post  LadyDi44 on Fri May 22, 2015 9:56 pm

Hi A2015, sgw11, & mikan92!

It sounds like we all have very similar situations here. I had been on birth contro (BC) since I was sixteen, with no problems for 3 years. I get migraines and my doctor had planned on weaning me off of BC because it can cause a stroke in women with a tendency for migraines. When I switched to a BC with lower hormones last year, that is when I got a yeast infection paired with VV symptoms.

Over the past year, my gynecologist has had me go off of BC and begin a 3 month regimen of Lidocaine (applied 3x every day) plus Diflucan pills (once a week). My yeast infection seems to be gone, but the VV has not improved from the Lidocaine. Now that my 3 months regimens are coming to an end (and 3 months off of BC), I will visit my gynecologist today to see what the next step is in treating my VV.

@A2015 - it does seem to have some tie with the yeast infections and BC hormones, but I agree that it is very frustrating and scary to think that this is now in our SYSTEM and isn't tied solely to a variable that we can eliminate from our bodies, like BC. Please do let me know if your dermatologist helps you cure this VV, as I think all of us on this thread have similar etiology for our vulvodynia!

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Re: Please help

Post  sgw11 on Sat May 23, 2015 12:07 am

Yes! Let's all keep each other posted. I'll let you guys know if I see any changes since I've had my 3 laser treatment sessions now. But like most treatments for vulvodynia, you're meant to wait like 2 or 3 months to see if anything changes.

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Re: Please help

Post  A2015 on Sat May 23, 2015 12:57 am

Hello,

We do have very similar situations, I hope we can keep this dialogue open and perhaps work through some treatment options.

@sgw11, I was on the Pill for 1.5 years (the exact time my VV started and ended). Thrush & BV came up directly after the morning after pill (a ton of hormones!) and I was put on the Pill on the same day I was given treatment for the infections. In hindsight, I can't believe it took me 1.5 years to recognise that the Pill was my cause! However, this time, Thrush/BV alone (or perhaps the antibiotics to treat the BV, which I was also given back in 2012) has caused VV to return.
Could I ask more specifically about your symptoms? I have visible redness & subtle inflammation, and am wondering whether the Amitriptyline cream reduced this for you if you have this symptom too? Did you feel actually cured for those 2 months?
I wonder what could have caused your pain to start, do you think the initial pain you experienced was due to the infection cultured once, but changed into classic VV symptoms following the antibiotics you were given? I have wondered whether the antibiotics I was given for BV could have been the trigger, rather than the infections themselves.
Of course, I will let you know what the dermatologist suggests.

@LadyDi44, our situations sound incredibly similar re Yeast infections & low dose BC (Microgynon is one of them). You may have also read online about Dr. Goldstein's theory that low dose BC can cause VV. This has been debated & disregarded by many doctors it seems, but from my experience, I believe this to be very true. I've also read other women who's VV has disappeared after stopping BC, so this can't be by chance. I am sorry to hear this hasn't been this easy a fix for you.

After endless browsing of forums etc., these 2 treatment options are worth considering:

— Oestrogen + Testosterone cream (e/t)
I read a 23-year-old post that she VVS for 3 years after recurrent yeast infections. She tried many many things (Amitriptyline & Gabapentin creams, Lidocaine, Coconut oil) without relief. She used Atropine .2%/Estradoil .05% + Testosterone .05% Risabal-PH cream which 'completely cured me', 'in 2 weeks all the burning and itching and agony I'd ever felt upon contact was gone'.
Another posted that it 'completely got rid of my pain in the vestibule. It feels like healthy skin there again. No side effects'.
Another was prescribed it by Dr. Goldstein to apply daily for 6 months, and writes that she has been using it for 4 months and the pain started to subside after 2 months and 'pain is gone in the vestibule area'. Apparently in her case, the BC caused her testosterone levels to go too low, which causes pain in the vestibule.
Another had tried Estrace (Oestrogen only cream) and her symptoms worsened, but using e/t cream twice a day for 2 months, her symptoms 'completely went away', she had a good 2/3 months but the pain returned.

My apprehension with this treatment is 1) Oestrogen is said to cause yeast to thrive, so could be a vicious circle for those of us who are prone to Thrush with VV? 2) Oestrogen is usually said to 'thicken' the skin (which is why menopausal women use it for atrophic vestibulitis which thins the vulva). I would say that though my skin feels delicate & tender, it is more inflammed with subtly swelling, rather than 'thin'. What do you find?

I want to understand more about hormones. There seems to be BIG difference between taking oral hormones (BC) and applying topically to the Vulva. I assume this is because BC completely changes the way parts of the body naturally produce hormones. Also trying to understand how 'low dose' BC is believed to cause VV for some, whereas you would think that 'high dose' BC would be more likely to! Hope I'm making some sense here.

— Vitamin B
Maybe a long shot, but I have read a post from a women who suffered with Thrush which later led to pain when the infections were gone. Her 'vestibule was very inflammed. Any kind of touch or stretching of the tissues was breath-takingly painful', 'a halo of reddened tissue around the vaginal opening'. She squeezed a Vitamin E capsule & massaged the tender red areas every other day. 'After about a month, the pain was almost completely gone. I actually returned to having a normal sex life!'. Two years later, she massages the area whenever she notices a 'flare-up' around twice a month. She still gets Thrush from time to time but 'there is no more redness or pain at all, but it takes maintenance'.

Apologies for my lengthy posts, just thought best to get everything down! Very much appreciate the chance to share & compare experiences. I am determined to get my body healed again & hope you can too.

A2015

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Re: Please help

Post  A2015 on Sat May 23, 2015 1:02 am

I also recently had a full blood test (hoping obviously to discover some hormonal imbalance) but everything was normal.

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Re: Please help

Post  sailor_moon on Sat May 23, 2015 6:26 am

Bloody birth control!!! If I knew all the problems it could cause there is no way I would have ever gone on it, but when you are young and suffering excruciating periods and your mum takes you to the doctor for help the doctors just automatically put you on the pill.

I feel for all you young ladies! i'm 27 and had this since I was 25. it is a cruel cruel condition.

Now, a thing about hormones...this is what happened to me after having over 50 hormone blood tests with no result. Have all of you that have had hormone tests been blood tested once a week for at least a month? the first test being on the 7th day of your period leading up to day 28? If not, do it, your hormones vary at certain parts in your cycle, not to mention throughout the day!after more than 50 hormone tests done as a one off i finally got to a doctor who tested me right. turns out I have consistently low estogen, bordering between menstruation and menopause. and consistently low progesterone. Now, how come noone else picked up on this???? Because regular doctors put hormones into a one size fits all category, whether you are 25 or 45 year old woman who is soon to go through menopause...they expect hormones of 2 totally different age groups to be the same!!!!! See a specialist who deals with hormones!A blood test AND ultrasound confirmed I have PCOS, but an insulin and sugar test showed it was not insulin related. Make sure you get Estrogen, Progesterone, testosterone, thyroid, AMH hormone, FSH and TSH all tested over the period of a month so you can see what your entire hormone cycle is doing. better yet, do it over 2 months.

If you are on the pill it will give a false reading. so be sure you are off it for at least 2-3 months beforehand.

I have found topical HRT creams down there make me worse and irritate, my specialist is due to undergo surgery on me next month to look at any internal causes for my problems. I cant use oral HRT in case I have endometriosis which will worsen if I go on HRT so it is unfortunately a long waiting game until I can take the next step forward. Sad

It sounds scary but a biopsy is also good to see what you are dealing with. If you have a skin condition like Lichen sclerosis or dermatitis ect it should show up. I had 2 biopsies which only showed non specific inflammation but it ruled things out at least.

It is bullsh*t that we have been suferring this for so long, I bet if men had this a cure would have been made long ago!
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Re: Please help

Post  A2015 on Sat May 23, 2015 1:46 pm

Hi sailor_moon,

Thank you for the suggestions.

I had a quick read through your other posts to see if your symptoms match mine. Our symptoms are slightly different as I don't have severe itching, discharge burning the skin or worsening through my menstrual cycle and you don't have pain on touch or during sex? I recently consulted a Naturopath with a focus on Candida. He said many Candida strains do not come up in tests, like Glabrata. I'm sure you've already researched this but thought its worth forwarding his advice to use Boric Acid, anti-Candida diet & natural antifungals. If this could be the cause of your symptoms, hormonal creams are said to make it worse.

I considered visiting an endocrinologist, but am skeptical about whether hormones are actually the issue for me this time, since my VV has come back following just the Yeast & BV infection. My periods have always been very regular (I have around 35 day cycles). Only the past 2 months, it was very light and last month I didn't have one at all—but I think this is due to recent weight loss from doing the anti-Candida diet (awful) and stress.

Another part of my story:
I recently had sensitive tests done (as I did in 2012 when they found nothing). This time, they found Strep B & Mycoplasma Hominis. These bacteria do not normally cause symptoms, and I know they are not the cause of VV because last time round with VV, they weren't there! Despite this, I was given Azithromycin to get rid of them. When taking these antibiotics, my VV symptoms worsened to constant burning without touching, which subsequently lessened. A follow up test showed Strep B was gone, but the Mycoplasma Hominis was still there. I was given Doxycycline for 2 weeks. I have not had another follow up test because they are very expensive, and I know this is not what is causing VV.

2 things I wanted to ask you all:
— Have you experienced any change at all in your discharge since VV symptoms started?
Mine has a slightly different smell to normal, sometimes more yellow, sometimes I can feel dry (this also happened in 2012-13 when I first had VV, and it returned to normal when VV disappeared)
— Do you experience any anal itching? I get it occasionally and sometimes a mild vulva itchy feeling (this also went away when VV disappeared first time round)

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Re: Please help

Post  sailor_moon on Sat May 23, 2015 10:24 pm

I tried strong Fluconazole for persistent thrush, I look 150mg a day for 6 weeks straight, all that did was upset my stomach!

I recently discovered that candida and other related issues such as Bacterial Vaginosis and cyclic vaginitis can remain present and treatments not work due to hormone imbalance which throws the PH levels out. So any treatment I try might not be working due to my hormones being so messed up.

I get anal itching only once every few months.

And of course,  when my symptoms are at their worst I can never get to my doctor!

My symptoms are much worse leading up to my period.

I have often wondered if I have a deep rooted candida infection,  but I find my symptoms don't get better at all when I take strong probiotics.  

How do you get a hold of some boric acid for the vagina?  I have thought about trying it but I don't know where to buy it or how to use it and I am scared it will make it worse.

My discharge is clear/cloudy looking...like clag glue (if you know what that is) and it is hard consistency, more solid than jelly. The discharge varies, a lot of the time I don't get much discharge. My vulva feels quite dry at times which I think is the lack of estrogen. It is different now to when I was normal and healthy.

I did an anti candida diet for 3 months but no change Sad
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Re: Please help

Post  web96 on Sun May 24, 2015 3:51 am

I have provoked vestibulodynia and I was able to reduce my pain by 80-90% by switching to all natural bath products (shampoo, soap, shaving cream etc.) and laundry detergent. I no longer have the severe burning/stabbing pain upon provocation to my vestibule. I have a remaining mild pain upon direct provocation to but insertion is no longer painful. I am now applying Estragyn topical cream locally to help with the remaining irritation and it appears to be helping. I believe my pain was mainly caused by a sulphate allergy. This is not the solution for everyone but it's worth a try. You can read more about my experience through the link attached to my signature if you're interested.
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Re: Please help

Post  mikan92 on Sun May 24, 2015 6:59 am

Hi ladies!

Just wondering for those of you who are applying hormone creams, how are they supposed to work/help? I don't think my provoked pain is a hormonal issue, it's more of a tissue inflammation/sensitive nerves so not sure if I should consider using those creams.

An update from using saginil gel for around 10 days: unfortunately I don't think saginil gel is effective for me. I am in a dilemma of whether to continue using it or should switch back to lidocaine ointment. Maybe I will stick to it for a while more. Please let me know if this is working for you if you are using Smile


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Re: Please help

Post  A2015 on Sun May 24, 2015 10:36 pm

If you have an unusual strain of Candida, what I understand is:
Fluconazole won't work, probiotics & anti-Candida diet alone doesn't kill Candida, symptoms are worse running up to your period. Boric Acid apparently kills all strains of Candida/Bacteria, so many people swear by it as an antifungal/antibacterial/anti-inflammatory. I haven't used it myself though so I can't advise properly.

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Re: Please help

Post  sgw11 on Mon May 25, 2015 11:56 am

Hey @A2015,

I'm pretty much the same as you, hardly any visible symptoms. When I was getting my last session of laser the doctor said he did notice that sections of my skin were a bit darker, which is not consistent with normal skin. However he was not a specialist in vulvodynia so he suggested for me to go back to my specialist and get it checked out, which I am yet to do. The amitriptyline legit cured me. I remember having sex with no pain at all, and just thinking "oh cool this is fixed now." This was before I fully understood the extent of this condition. I stopped it after 2 months, because my specialist said if after 2 months it was okay, I didn't have to go back to her. However she actually said to use it for 6 months, which I got mixed up, so I thought I only have to use it until it was better. I regret stopping it sooo much now, but I only stopped because I thought I was meant to. Our wires just got crossed. So disappointed! I would definitely recommend going on it. I still use it twice a day, and I'm able to have sex with just pain on initial penetration. When I was first diagnosed it was way too painful to have sex, so it has definitely helped.

I actually have no idea what caused it. I kept going back to the doctor because it felt as though I had a UTI, so of course I wasn't having sex because everything hurts and I couldn't even imagine doing it. Time after time again I would go back and have the same urine tests done over and over, been given all these different antibiotics to try until they eventually put me on macrodantin which was meant to be preventative against UTIs. When that didn't help my mum said that I had to go see a specialist. The repeated use of antibiotics is the only thing that I can really pinpoint as a possible cause of my vulvodynia. Every time before that, I was having pain free sex. I'm just so sick of this!

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Re: Please help

Post  A2015 on Mon May 25, 2015 12:48 pm

Hi again sgw11,

That is interesting. I am a little confused about how topical antidepressant creams work, whether they actually target inflammation or nerves..? Of course the mystery of the symptoms we have makes it hard to know which medication should/could work.

When you say yours is provoked, I would agree mine is too. If I touch the skin of the reddened/inflammed vestibule, it is very sore and tender. Is yours like this? If so, did this simply go away when you used the amitriptyline cream? You must have been so relieved when you could have sex with no pain—what type of pain do you experience?
I am so desperate to see my skin in that area just reduce to its normal colour with no inflammation—as it did like magic when I came off the Pill!

I would suggest you consider coming off the Pill just to see, even if you have been on it for a long time, as I think some women have developed VVS after being on their BC for a while.

Dermatologist tomorrow, will see what he says.

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Re: Please help

Post  sailor_moon on Mon May 25, 2015 8:32 pm

I'm with you A2015. I'd love to see my skin go back to normal too. I am inflammed 24 / 7. I'm on Lyrica but it doesn't do much at all.
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Re: Please help

Post  sgw11 on Fri May 29, 2015 9:43 am

Hey A2015,

yeah all your symptoms sound exactly like mine. Yeah it made the pain go away, but now when I put it on I can feel it hurting, but nothing crazily painful. The pain I experience kinda feels like tearing or something. How about you?

And sailor_moon, I also tried Lyrica but it didn't do anything for me either Sad

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Re: Please help

Post  sgw11 on Wed Jun 03, 2015 4:48 am

hey A2015,

any news on the dermatologist front?

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Re: Please help

Post  A2015 on Wed Jun 03, 2015 8:33 am

Hi sgw11 & others,

My dermatologist had a very good manner, listened to my entire story carefully & is a very experienced dermatologist. He inspected me (Q-Tip etc.) and confirmed Vestibulitis. He says my case is 'mild' and the condition is very common, he sees a lot of it. He says my vulva looks normal, though I know my body and there is certainly a mild redness & swelling of the sore vestibule (just like it was when I had this on the Pill, and it went back to normal). I asked why coming off the Pill led to a complete resolution of symptoms, and he said he did not know why.

He wants to see if it settles, as he explained about nerves getting overly sensitive following infection. He said the words 'it will get better' so I must hold onto this hope, however hard it is to believe.

He explained the next choice of treatment would be a low dose antidepressant, but I am concerned this is more appropriate for unprovoked Vulvodynia than provoked, localised Vestibulitis, with rawness of the skin (however subtle it is).

For now, I have chosen to apply Vitamin E oil daily. Please no negative comments, as I really have to stay positive, we all do!

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Re: Please help

Post  sgw11 on Thu Jun 04, 2015 2:14 am

Hey A2015,

thanks for keeping us updated. So he didn't give you any other creams or anything to try? I would highly recommend getting the amitriptyline cream (low dose antidepressant). It cured me to being with, but as I've said before there was miscommunication with my doctor and I stopped using it before I was meant to, and then the vulvodynia came back. I still use it now and I'm able to have sex, but there's still pain. Yes, positive thoughts please! I've heard stories of women who have it for like 10 years and it goes away...let's just hope we don't have it for that long! I've also started the saginil gel, but so far there has been no change. I'm also booked in to see a dermatologist in July who specializes in conditions of the vulva (she was so booked up so hopefully that's a good sign).

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