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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 7

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

I'm New Here so I Guess My Story is too.

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I'm New Here so I Guess My Story is too.

Post  rachlea on Thu Dec 22, 2011 4:55 am

I am 42 years old, I have suffered from Vulvo for almost 11 years.

My medical hystory has been normal I had 2 children. I have had 2 Episotomies. My plevic muscles were weak and my Uterus developed a lot of cysts after the last baby. I had vaginal deliveries both normal. I started experiencing a lot of internal pain during sex. My Gyno recommended a Hysterectomy when I was 30. I was ok with this my husband and I were done with having children. He had actually had a vasectomey done for me (He was sweet)

The Pain was immediately better. I did notice some vaginal itching and burning around the week I usually had my period. I also noticed I began to sweat in my vaginal area. I had never experieced this before. It was mild and I used some creams and it helped. I still have the Burning during my previous Menstral time to this day.

When I turned 34 I developed a large Cyst on my left ovary. Since I no longer menustrated my gyno suggested I remove it. I went ahead with the surgery. I currently have my right ovary and as Far as I know its working well.
(except for the darn mustashe that wants to grow)

Over the next couple of years the vaginal itching became worse, I developed a large fissure between my vulva and anus. It was all I could do to keep from scratching. I went back to my gyno several times. He prescribed steroids to help the fissures which eventually cracked and bled. He tested me for everything under the sun, Finally convinced it was my hormones he tested my estrogen and testosterone levels for 4 weeks and they were all normal. I did not suffer from Vaginal Dryness at this time.

I asked him if he thought it may be skin related he said no, however I made myself an appointment with a Dermatologist anyway to be sure. I have had some cystic acne as a teenager and took acutane for almost a year so I was thinking the acutane caused my problems.

The Dermatologist took one look at my skin and said you have Vulvodynia, I had been there 2 minutes! Gyno FIRED!

She prescribed me a very High dose of CLOB and gave me a diagnoses of LICHEN SCHLEROSIS/VULVODYNIA, I went home and read it online and was devastated at what she told me. Telling me that My vagina would close up eventually and I would not be able to find a cure Sad (On a Brighter Note my hubby told me he would never let it close)

Fortunately I had been diagnosed early and the CLOB helped me tremendously, I only use it for a few days a month.

I am now 42 and over time vaginal dryness has become an issue, sex has always been difficult, I have found that using a skin balm in this area before sex usually helps, I usually hurt internally for a day or so after sex, so I have learned to take some motin or drink a little wine/beer beforehand to relax the muscles. My New Gyno also tells me to wash the area well and apply my cream after going to the bathroom. (I always have to go after sex anyway). Moisturization is also a key I use cetaphil Lotion in this area to keep it very soft.

I have a smell at times and I have asked my New Gyno about this however I never have any yeast or bacteria growing. I am perplexed about this. It makes me self Conscious at times.

My Husband has been wonderful it was not easy in the beginning so if anyone needs to talk I have been there. Its always best to be totally honest with your partner, They have to know that you love them and that they are still sexy to you and that your problem is not about them, but it does involve them. I think the one thing that bothers me about my hubby tho, He washes himself like I have a disease sometimes after sex and it bothers me. I wash too I mean we did before I had problems but I donno its somehow different.

I am now starting to have a lot of discomfort internally with sex, However my Gyno cannot find anything wrong. Sad

I Hope someone can tell me something useful I do not have any friends that understand my problems they all think a pantyliner and a bottle of perfume will solve my Problem Rolling Eyes

I Hope to make some friends here Very Happy


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Re: I'm New Here so I Guess My Story is too.

Post  Sarah001 on Fri Dec 23, 2011 8:25 pm

Hi and welcome. I'm sure another member had a hysterectomy and then mentioned a strange odour but I can't recsall who it was, it might be in a thread with hysterectomy in the title if you want to have a look for it. I have heard aloe vera gel is good for LS so it might be worth a try, there is a lube called Yes that contins it too. Have you considered you may have scar tissue and stuck fascia from the surgery? Might be worth a trip to a women's health physio to discuss that possibility. Anyway, welcome and I hope you find some posts of interest here.

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