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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

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: 1

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

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: 3

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: 10

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


Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Tue Sep 20, 2016 3:19 pm

Hi LT,

I wish I could confirm the glowing reviews from his website and other sites, but unfortunately I can't.

Like you, I thought it all sounded too good to be true, and I contacted three of his previous patients who all said he saved their lives. However, I speak daily to a post menopausal woman who I found on a support site where she mentioned she was seeing Dr. Fowler, so my following honest opinion of him is shared by her also (she actually receives worse support from him than I do).

Firstly, her and I both share your concerns with his "Hypocontactant Regimen". The rinse is extremely irritating for my friend (couldn't bring myself to try it), and using soap on the vulva daily is extremely irritating and drying. My friend and I both stopped shaving down there, as he recommended, because it caused too much irritation. I do, however, agree with not washing your hair in the shower and changing to a TRULY hypoallergenic laundry detergent (search here: http://www.ewg.org/guides/subcategories/49-LaundryDetergentHE).

Secondly, his treatments consist of antibiotics, antifungals, bioidentical hormones, and steroids. All were extremely irritating for me except the estrogen vaginal tablet that he put me on, but my friend reacts poorly to her estrogen as well. Although Dr. Fowler is willing to substitute the hormones in a different base (crisco, k-100, etc.), any other irritation you "complain" of will be met with a repetitive "consider it therapeutic discomfort" and "give it more time". Once you are done with the several month course of antibiotics, antifungals, and/or steroids, his ONLY lasting treatment is bioidentical hormones. That's it! If you aren't seeing results, he simply increases your doses and tells you to give it more time. My last visit with him he told me he didn't want to see me again for six months (that's a long time for a woman with vulvovaginal pain). He also seems to over diagnose lichen sclerosus. He told both my friend and me that we had lichen sclerosus, but we've both since had specialists confirm that we don't (my friend had a biopsy to confirm).

Lastly, he has horrible customer service. It takes him days or weeks to respond to your calls, if he responds at all. My friend and I both have had several calls/emails unreturned. When you're in the office with him and ask him a question, he won't answer but instead will refer you to his packet of information he handed you (regardless if it answers your questions or not). He is in no way sympathetic to your pain. When I sent in my paperwork and payment for my four month follow up, I didn't hear from anyone for several weeks, and he ignored my call inquiring about scheduling my appointment. One day I got my test kit in the mail, I sent it back in, and days later I randomly get a call from his assistant who hands the phone to him for my 5 min unscheduled appointment (I was at work at this time and didn't have my list of questions near me - they didn't care).

So, unfortunately I can't recommend him even though I think the idea that vulvodynia can stem from unbalanced flora is absolutely worthy of further education to every gynecologist. It's just unfortunate that Dr. Fowler seems to be the one driving that belief. I don't think I will return to him again, and if I want to continue using bioidentical estrogen, I will find a specialist in my area for that.

Another thing I found odd and a little suspicious was that my four month follow up test results had some items come back identical to what I tested for four months prior. Even if I didn't improve any, having IDENTICAL results seems very improbable.

However, his treatments may work well for you! So I'm not saying just because I don't believe in his ability to heal me anymore that he couldn't help you heal. I'm happy to answer any questions you may have. I'm an open book Very Happy

emalita

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Join date : 2016-03-29
Location : USA

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  LT on Tue Sep 20, 2016 6:58 pm

Thank you so much for your honesty.

LT

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Join date : 2016-09-20

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

Post  emalita on Wed Feb 15, 2017 9:30 pm

Well, I just wasted $400 to have a “phone consult” with Dr. Fowler, which equals him calling you randomly during the day without an appointment asking if you can chat for 5 minutes. The only reason I wanted to have a consult again was to get a refill on my estrogen since I think it may be helping internal dryness (THAT'S IT), but he would only give me a 3 month supply. He also is increasing my dose from Estradiol 250mcg/Estrone 150mcg to 500/300, which seems intense. I even told him that I thought my INTERNAL discomfort was 80% better (since he demanded a percentage and would not let me describe the improvement).

I’m done with him. Some of my results are a bit better, some are worse, and some have stayed the same. I think his theories are BS in most cases from what I've also heard from other women seeing him. I can easily find another provider who can prescribe vaginal bioidentical estrogen, but I was just hoping it would be easier getting a refill from him, which wasn’t the case.

Anyways, below are all of my results so far...

Below are my test result from March 2016:

Squamous Cell Maturation (nl = fully maturated): >50% Intermediately Maturated
# of Squamous Cells per Single KOVA Cell (nl = 20 – 24): 4 – 8
# of White Blood Cells per Single KOVA Cell (nl = 0 – 2): 51 – 75
Concentration of lactobacilli (nl = Q1 – 2): Low, separated by 5 – 6 segment lengths
Excess Non-Lactobacilli Bacteria (nl = none present): Hazy background
Presence of Yeast (nl): nl – no yeast elements identified

Below are my test results from June 2016:

Squamous Cell Maturation (nl = fully maturated): >50% Intermediately Maturated
# of Squamous Cells per Single KOVA Cell (nl = 20 – 24): 4 – 8
# of White Blood Cells per Single KOVA Cell (nl = 0 – 2): 0
Concentration of lactobacilli (nl = Q1 – 2): Low, separated by 5 – 6 segment lengths
Excess Non-Lactobacilli Bacteria (nl = none present): Speckled
Presence of Yeast (nl): nl – no yeast elements identified

Below are my test results from February 2017 (changes in red):

Squamous Cell Maturation (nl = fully maturated): 50/50 Intermediately and Fully Maturated
# of Squamous Cells per Single KOVA Cell (nl = 20 – 24): 12-16
# of White Blood Cells per Single KOVA Cell (nl = 0 – 2): 2-12
Concentration of lactobacilli (nl = Q1 – 2): Low, separated by 5 – 6 segment lengths
Excess Non-Lactobacilli Bacteria (nl = none present): Speckled
Presence of Yeast (nl): nl – no yeast elements identified

emalita

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Re: Vulvodynia Caused by Lichen Sclerosus & Inflammatory Vaginitis?

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