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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, …

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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 …

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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 …

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

Fri May 27, 2016 6:50 am by Lucci

Hello,

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 …

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Vestibulectomy

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Vestibulectomy

Post  infinitelywondering on Sat Jul 29, 2017 6:50 pm

Hi ladies,

My vestibulectomy operation is scheduled for Wednesday the 2nd August; I'm really scared!
I'm going to post updates throughout the healing process- I keep having second thoughts but I've tried so many different medications that have failed me, this is my last chance. I'm only 17 so I am pretty young for this sort of operation AND I have exams to get into Med School this year - terrible timing!!

I'm super passionate about battling all types of chronic vulval pains such as vulvodynia and I hear it is something not widely recognised amongst medical professionals. My own GP told me that I am completely 'normal' and the pain is merely psychological Evil or Very Mad . It seriously saddens me that people don't understand and are not supporting us....

I know it sounds crazy and idealistic but I have been working my arse off to get good grades so I can get to medical school and kick some ass about chronic vulval pain. It cannot be ignored for much longer

I am lucky that I found Miss Gabrielle Downey, who I have mentioned before; she is a gynaecologist who specialises in this stuff and she is honestly as frustrated as me about it all. She works at BMI hospital in Edgbaston(private) and Birmingham City Hospital (NHS). I really think she is fantastic so if you are suffering and can make it up to Birmingham, I would recommend that you do. If you want to be treated quickly like me, I had a consultation privately for diagnosis and then was referred to NHS for surgery.

I have a very supportive family and a very supportive boyfriend- I won't let this get me down even though it is constantly at the back of my mind. I am excited yet terrified for the surgery and if anyone has any tips to help me, I'd be really grateful!!

Love,
infinitelywondering

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Good luck!

Post  jungleclover on Sat Aug 05, 2017 7:36 am

Hey man, good luck! That sounds so scary but I'm glad you're working on things, have a great medical team, and the support of your family. It's really hard having this problem when you have goals like med school. I'm trying to get into PT school and sometimes I wonder how I'll do it. Like how am I going to have a career where I have to walk around all of the time. Some days I feel great but others I want to curl up in a ball and not move. Either way, I really hope all goes well. Know that you aren't alone! Maybe you'll end up in the research field after med school and can help all of us ladies out <3

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Re: Vestibulectomy

Post  sj17 on Mon Aug 07, 2017 5:24 pm

<3 <3 Brave brave lady.

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Re: Vestibulectomy

Post  infinitelywondering on Wed Aug 09, 2017 11:34 pm

Hi ladies I'm really worried...

I've started having this horrific burning since my vestibulectomy. I had a look and it appears that I must have some sort of infection as on one side my skin is bright red and burning hot Sad shall I contact my GP asap?

X

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Re: Vestibulectomy

Post  sj17 on Thu Aug 10, 2017 12:51 am

you probably have a yeast infection or a UTI. contact your gp immediately tomorrow. Nothing to worry about though, they're quite common post surgery xx

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Re: Vestibulectomy

Post  Ilya on Sat Aug 12, 2017 4:34 pm

Hello,
I hope you contacted your doctor and are feeling better already. Thanks for sharing your story with us Smile
I am sure with this positive attitude of yours you will overcome this pain ans will be a successful dr and will help a lot of women

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Re: Vestibulectomy

Post  Hopeitworks on Sat Aug 12, 2017 4:56 pm

I hope you contacted your doctor and it's going away. I had a Vestibelctomy recently also and I'm so worried it will get infected. Thanks for sharing your story!

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 1:29 am

Hi ladies,

Thank you all for your lovely and kind responses.

The burning has calmed down, I'm not entirely sure what it was ? I'm feeling fantastic at the moment, I'm back to driving, my normal life style and going out again- one week after surgery!

I'm still taking things slowly though but I do seem to be healing really nicely. I think for me the thing that has helped lots is bathing in a bidet and recently I've been using salt water to help the wound (I thought that would hurt but it didn't). I've continued using the manuka honey and I'm sure it's working.

I've been off my pain killers for two days now and I feel great. I don't know why I've suddenly started feeling better but I am certainly not complaining ! Who knows if the surgery has worked, but at least for now everything is looking good

Thank you!

X

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Re: Vestibulectomy

Post  Hopeitworks on Sun Aug 13, 2017 1:33 am

I am so happy for you!

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 1:40 am

How are you? X

How is your recovery going ?
I hope it's all okay Smile

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Re: Vestibulectomy

Post  Hopeitworks on Sun Aug 13, 2017 1:50 am

I'm doing well! The only pain I have is from healing. I have been taking it easy but I did go to dinner and lunch with my husband. We went shopping and it was nice to get out. But when I overdo it I start to feel it. I'm still walking slow. Still hurts if I sit directly on it. If that makes sense. I sit kinda on one but cheek. But I am so happy I don't have V pain! After 10 yrs of constant pain I am speechless! I stopped the pain meds 4 days ago. It still hurts to wipe when using the bathroom. I'm still taking baths or sitz baths at least 2 to 3 a day. I have no signs of infection but itchiness comes and goes.


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Re: Vestibulectomy

Post  Ilya on Sun Aug 13, 2017 3:53 am

Very happy to hear both of you doing better. Keep us posted

Love

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 9:54 am

That's absolutely brilliant, you're right to keep taking things slow.

I hope this positivity continues for us
Smile

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Re: Vestibulectomy

Post  infinitelywondering on Fri Aug 18, 2017 10:50 am

Hi guys,

I think I have an infection because I've experienced lots of swelling and yellow-green discharge from the wound....

Shall I contact my GP for antibiotics?

Thank you x

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Re: Vestibulectomy

Post  Hopeitworks on Fri Aug 18, 2017 12:39 pm

Oh No! Keep us posted.

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Re: Vestibulectomy

Post  sj17 on Sat Aug 26, 2017 3:55 pm

How is the infection now? X

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Infection update

Post  infinitelywondering on Sun Aug 27, 2017 9:42 am

I've been taking augmentin and had quite bad side effects ! However the infection has cleared up and I feel much better now Smile

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Re: Vestibulectomy

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