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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

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

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


Looking for suggestions or encouragement

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Looking for suggestions or encouragement

Post  ryn207 on Sat Jan 13, 2018 12:10 am

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 medicine the itching got a little better for a couple days, but then continued. At this point I was told to look into things I could be allergic to. I changed my detergent to Dreft, switched my soap, but it didn't change anything. When I was retested again it showed that I no longer had any type of infection, yet I was still itchy both vaginally and near my anus. I also started feeling a lot of pain if I walked longer than 10 minutes. It felt like needles and my nerves were super sensitive. Intercourse was also of course very painful.

I started seeing a dermatologist in September of 2016. I was put on Clobetasol Propionate and told to use Aquaphor over it to avoid drying out the skin. I later received a Kenalog injection into my lower back muscle as well. The injection did nothing except cause a lot of facial swelling that lasted over 6 months. We later added Gabapentin, Tacrolimus, Amitriptyline, weekly Diflucan, and Kenalog injections directly in my vulva and near my anus. The Amitriptyline, Clobetasol Propionate, and Tacrolimus helped a bit, but I was still in some pain and had lots of itchiness.

My dermatologist then sent me to a Physical Therapist in May of 2017. I worked with 3 Physical Therapists and went twice a week where we did stretches, internal PT, dry needling, and used essential oils. The pain when I would walk stopped, but I still had itching. I got another yeast infection in June which I treated with yogurt and Diflucan. At that point I stopped the Clobetasol Propionate (which can cause yeast infections ironically), and Tacrolimus. After a few weeks I went back on the Clobetasol Propionate and Tacrolimus and for some reason it actually started working. For 5 weeks I had almost no itching. Intercourse was still a little uncomfortable, but not painful. At the beginning of August I started feeling like I was getting a yeast infection. I treated it again with Diflucan and yogurt and took a couple days off of the Clobetasol Propionate and Tacrolimus. Since then some of the itchiness has gone away, but not 100%.

I no longer go to PT since I hit a plateau and they felt that PT was no longer making progress. I started going to therapy about 6 months ago, but I truly feel that I would be fine if only this pain/itching would just go away, I continue to see my dermatologist and she feels like I just need time. I am also seeing a gynecologist who specializes in vulva disorders. She currently has me using CBD Oil every day. So far I haven't noticed much of a change.

While this has been an extremely draining and expensive process, I am lucky to have supportive family and friends and a very understanding boyfriend. I know giving up isn't an option, but I just don't know what to do anymore. Nothing has been able to take all the pain and itchiness away and I'm just looking for any advice at this point.

ryn207

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Re: Looking for suggestions or encouragement

Post  Mintaherb on Sat Jan 13, 2018 3:35 am

Hi, I'm really sorry to hear about everything you've been through! I'm by no means a doctor, but here are some general thoughts:

You mention at the start of your story that you were treated for a bacterial infection. Were you retested to check that the infection had been cured?

At the time of the first yeast infection, can you think of anything that might have triggered it? For example, had you recently started hormonal birth control (this is known to cause yeast infections and vulvadynia)? If so, stopping the hormones may help things improve. Or had you recently taken antibiotics, which can disrupt your gut microbiome, leading to a disrupted vaginal microbiome (and therefore a yeast infection)? If so, then probiotics may help. Also, if you and your boyfriend don't use condoms then he could have caught the yeast infection from you and you could therefore be passing it back and forth. It could be an idea for him to get tested and treated too.

You sound like you've been on a lot of drugs, in a fairly broad/scattered approach, rather than your doctors actually trying to discover the root cause of this and therefore giving you the correct treatment. You could try seeing a naturopath or functional medicine practitioner, who would approach things from this perspective. If you're in America, I've heard about the Centers for Vulvovaginal Disorders, and especially about its director Dr Andrew Goldstein. One final thing - if you found that the immunosuppressant treatments seemed to help, and itching does suggest an allergy/immune involvement/inflammation, Dr Goldstein suggests taking Montelukast/Singulair. It might be worth a try. Good luck and don't give up!

Mintaherb

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Re: Looking for suggestions or encouragement

Post  ryn207 on Sat Jan 13, 2018 7:45 pm

I was retested twice and both times came back clear for infections. I tried thinking of things that happened around the same time it started but I've been on the same birth control for about 3 years and I can't remember the last time I took antibiotics. The PT's I went to had more of a holistic approach and had me start taking probiotics that are good for vaginal health. I have been taking them every other day in hopes that they at least lower my chance of yeast infections. My dermatologist thought I had Lichen Sclerosus, but I would think over a year of treatment would've taken care of it by now.

When I first had the infections I did have my boyfriend go to the doctor to see if he had a yeast/bacterial infection. The doctor told him you can't test men the same so he just gave him cream in case he had one, but he's never had any symptoms during this whole process.

I haven't tried a naturopath or functional medicine practitioner so I will definitely look into that! I also bring up Montelukast/Singulair at my next appointment. Thanks for everything!

ryn207

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Re: Looking for suggestions or encouragement

Post  Mintaherb on Sat Jan 13, 2018 9:23 pm

You're welcome:). Also, this is a totally random thought, but might there be any possibility that you have threadworms, as these can cause itching in the vulva and anus? If not, it might still be worth coming off hormonal birth control and giving things 3-6 months to see if they settle down. Sometimes birth control can seem to suit your body initially, but then issues can start happening a couple of months or years later.

Mintaherb

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Re: Looking for suggestions or encouragement

Post  ryn207 on Tue Jan 16, 2018 1:19 am

I don't think it'a threadworms. I looked it up and the itching is the only symptom I have and mine doesn't necessarily itch more in the morning. I have my annual coming up so I'm going to bring up your birth control suggestion. Thank you again!!

ryn207

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Re: Looking for suggestions or encouragement

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