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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 …

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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

Recently diagnosed and the tips I was given..

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Recently diagnosed and the tips I was given..

Post  Newbieadelaide on Fri Sep 14, 2012 11:56 am

Hey guys

So I usually never post on forums but I am doing so in hopes that the advice I got will help you too...

I have had a rough few months. I was diagnosed with endometriosis within seconds of my
Gyno reviewing me. It was quite a shock...within 48 hours I was having surgery!

After my laparoscopy I thought everything was ok...until I got hit with a strep b infection! Then I got thrush from the antibiotics and then got strep b again. My doc says that my body has been traumatised so everything was out of whack. After a heap of antibiotics and thrush treatments the infection went away but I still had pain, irritation and sensitivity around my vulvar. Naturally my doc thought maybe it was STD related but all the tests came back nagative which included swabs and blood tests.

After 3 months of constant pain and irritation my wonderful doc was able to get me an appointment with a dermatologist in adelaide who specializes in vulvar disorders.

Within seconds of the dermatologist reviewing me she diagnosed me with vulvadynia. Her tips were as follows:

- massage vaseline at least twice a day into the vulvar where the pain is. If possible you could do it a few times a day. The more the better!
-increased my endep to 25mls each night - I was only 10mls to relief pain from endometriosis. Endep is the original antidepressant that it used more for pain relief these days. Beware though it does leave you drowsy the next day. In order for it to be effective as antidepressant you would need to take around 100-125ml a day.
- don't overly wash the vagina as it naturally cleans itself. I think I was overly cleaning it which was irritating the skin
- try to reduce stress as this could be contributing to your pain
- consider pelvic floor physio

In addition to her advice my doc said

- cotton underwear only. Now this is hard to find because even bonds don't make pure cotton but it's pretty close
- discontinue using soap for your vagina including femfresh. Use the sorbolene cream that has at least 10% glycerin
- do not wear pads unless you have your period as this can cause dermatitis
- use the sensitive washing powder - its quite expensive but this is important as you don't want to be washing chemicals on your underwear which is then touching your vagina
- use unbleached toilet paper which is free of chemicals
- avoid tight clothing including tights. I bought the tight things that go up to the top of your leg

The dermatologist's advice of using the Vaseline and massaging this into the vulvar was quite shocking and I looked at her with a 'huh' kind of look! However, I have been doing this for 5 days and my pain has decreased. Still not heeled but certainly has helped. I guess it's like when you have a knot in your back and you get a massage to get rid of it...guess its kind of the same thing really it's about massaging your nerve endings. In the beginning it hurts but it does get easier. Be gentle though dont push yourself. The dermatologist has asked to see me again in 3 months but she is hopeful the above techniques will help me greatly.

Fingers crossed and I hope I'm not jinxing myself but I just hope that this info could help other people, even one person would be great because I know how debilitating it can be.

Take care guys Smile


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Re: Recently diagnosed and the tips I was given..

Post  Char29 on Wed Oct 10, 2012 8:16 am

Hi - thank you so much for your advice.
I have had V for almost 40 years now and by trial and error I just wanted to share:
There are two things I think you should be careful of.
The Endep may work initially, but it stops working after a while. It makes you put on weight and also makes you stop feeling anything. When I was on it, I could hear a really funny joke and would not crack a smile. Not a good way to live. And it did nothing to soothe my V.
And also putting vaseline/petroleum jelly on the area may feel good initially, but it is not a natural product and will make things worse long term. From trial and error, coconut oil (organic) or even olive oil are much better. For soothing and as a lubricant.
Diet plays a huge part in all of this as well - at the moment I am in the process of changing everything in my diet.
Gluten free, Dairy free, sugar free and low alkaline.
Good luck on your journey.
Charmaine xxx


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Re: Recently diagnosed and the tips I was given..

Post  Alana3 on Thu Oct 11, 2012 2:42 pm

Also, to add. I was freaked out to gain weight or have any more awful side effects from oral pills (antidepressants, pain killers, etc). I told my doctor my fear of this (I am a zumba instructor and work out 4-5 days a week plus horseback ride) I can't be gaining weight, especially after I work so hard to keep it off Smile Plus I'm used to V why would I want to complicate it with anything worse or more ugh!

He mentioned that if you use a topical it absorbs thru the skin wall and not thru your liver which is where all the crazy side effects happen. I have been on a gabapentin, ami (whatever that antidepressant is) and lidocaine compound for a week now and have zero symptoms from the meds and it's helped. Ask for a topical compound, it's so much better! Be careful with the pills it can make things so much worse, and pain killers work for a bit and than your body adjusts. At least that's what I have found :/


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