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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

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 …

Comments: 3

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 …

Comments: 6

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 …

Comments: 4

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 …

Comments: 4

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 …

Comments: 0

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 …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6


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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