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» Change in birth control question
Today at 3:47 pm by Jo44

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

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: 1

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: 9

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: 0

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: 1

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: 5

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

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


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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