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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 19

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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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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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