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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

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 …

Comments: 6


Helping My Partner Cope

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Helping My Partner Cope

Post  Huffmanl795 on Mon Aug 22, 2016 11:20 am

I have had vuvlodynia for five years and went into remission with it for two. Unfortunately three months in to dating a guy I fell in love with, my symptoms came back and I now have pudendal neuralgia. Is there any tips or advice on helping him cope through this? He is always there for me and supports me but it is taking a toll on him. I can't go out and do things like I use to, our love life suffers, and he feels guilty for feeling disappointed. How can I help him cope and not feel guilty, at fault, or alone. He has tried to find ways to cope but to no avail. I tell him all the time that it's ok to feel upset about it and sad. That I don't hold me against it. It affects him just as much as me. I just want to help him so our relationship can thrive. Any ideas?
Thanks!!

Huffmanl795

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Re: Helping My Partner Cope

Post  PainBlogger on Mon Aug 22, 2016 2:55 pm

Good communication is really important. If you can both be 100% open with each other and talk through worries, frustrations etc then that's a form of intimacy in itself. Not the most fun kind, obviously, but it does help to strengthen a relationship.

Finding things that you can still do together - if you don't feel well enough to go out then think of some things you can do to spend quality time together at home. Or is there a way you can make going out and about more manageable - like getting a good cushion if sitting is an issue or making other adaptations.

If you're researching possible treatment options that you've not yet tried then include him, show him articles you read etc.

When it comes to physical intimacy, it can be easy to cut it out completely so as not to raise expectations, but I think it's important to continue to share physical affection by any means that does not cause pain. By making sure he knows exactly what you can and can't do right now before getting into that situation you can remove any pressure to 'go that bit further' when caught up in the moment.

This condition, by its very nature, does take more of a toll on romantic partners than some other chronic conditions. Which is not to say that, for example, severe back pain or a heart condition cannot cause equal disruption to one's love life and socialising opportunities, but at least other conditions are easier to talk about with friends and family.

Good luck Smile

PainBlogger

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