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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
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


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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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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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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