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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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: 14


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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