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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

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 …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


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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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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