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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: 6

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


Mine is really bad at the moment

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Mine is really bad at the moment

Post  Ceriane on Wed Nov 09, 2016 4:24 pm

I have had vulvodynia for years. I also have vitamin deficiencies which are really bad at the moment B12, D3 and anaemia. I avoid getting into relationships because of it, and have also started avoided even socialising if I know I will be in situations where I will be constantly quizzed over why I'm not in a relationship. It is getting me down so much and making me miserable. I really feel disabled by my condition. At the moment I have a lot of soreness and dryness of the vagina, it is so uncomfortable and I couldn't face even being intimate with anyone at the moment. I have zero sex drive. I also have what feels like a uti...a burning sensation in my bladder, and around my back passage the skin is so sore it is splitting open. I am in so much discomfort and pain, feel like I have a yeast infection I can't get rid of. It makes me feel really horrible...I don't think it is the nerve pain thing (although I think I have that as well) I think it is more infection, skin condition related and linked to my body being very run down by my vitamin deficiencies. I don't think this is something that can be solved by an operation, I worry that if I was with a guy, they would expect me to have the operation....but I don't think my problem is that simple (guys always think there is an easy solution). It's getting me down emotionally and I can't go on avoiding relationships forever (like I have done for years....and people's questions are getting more and more awkward). I just don't know what to do...I am so miserable. Can anyone relate or offer me any advice. Would be appreciated.

Ceriane

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Re: Mine is really bad at the moment

Post  Sebby (Admin) on Wed Nov 09, 2016 5:17 pm

Hi, I'm sorry to hear you are going through a bad patch.

I had my worst time with it back in 2009 for over 2 years. I had constant pain, rawness, soreness etc.

I have always had provoked and I think it was stress that caused the constant pain. Then suddenly it went! I still do have provoked but not pain 24/7. I wish I could know what helped I was on lyrica but have since come off it with no problems.

It can be such a bloody mystery this condition, feels more like art than science trying to find solutions.

What have you tried so far? physio? meds? diet? there is so much to try and it can feel so overwhelming but different things seem to help different ladies.

Don't rush yourself to feel able to date or feel you have to make excuses. I was single for the 2 years and just said I needed time on my own for me.

I started dating my now husband in the spring of 2011 and was so nervous when I told him about the V but he has been amazing and patient! You never know you may meet someone just as understanding.

including myself two other ladies I met of this forum met someone and got married all whilst struggling and still struggling with V.

There is always hope and healing

Keep us up to date

Sebby
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Re: Mine is really bad at the moment

Post  Ceriane on Thu Nov 10, 2016 10:01 pm

Thanks Sebby...That has really helped. You know...I think people underestimate how much stress can be a factor...I know when I'm stressed mine gets a LOT worse...feel a lot more positive now about learning to manage my condition, and that I can still have a great relationship. Wish I hadn't let it put me off for so long.

Ceriane

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Re: Mine is really bad at the moment

Post  Sebby (Admin) on Sun Nov 13, 2016 6:33 pm

Yes you can have a great relationship as many of us have.

Stress and anxiety definitely makes my condition worse. Its a vicious circle having V and an anxiety disorder as they both feed each other.

I try to practise mindfulness and breathing exercises as well as prioritising self care.

Don't give up searching for a treatment that works for you. Its normal to hit dead ends on many of the roads but at some point you do find something that helps.

Wishing you luck and healing

Sebby
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Re: Mine is really bad at the moment

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