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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 …

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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 …

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


Looking For Answers. Comparing Notes.

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Looking For Answers. Comparing Notes.

Post  BpCookie on Wed Feb 20, 2013 10:58 pm

I have Lichen Simplex Chronicus which pretty much causes the same symptoms as Vulvodynia. My Gyno's some times calls it Vulvodynia. I wanted to ask a few questions to see if any one has any of these things in common.

1. peri menopause, menopause or hormone problems?

2. has anyone had a uterine ablation done?

3. any STD's? (I had vaginal warts and my dr. froze them off, three damn times. I still have scaring)

4. use a vibrator before all of this happened?

5. Problems with a lot of yeast infections?

6. Problems with lots of UTI's?

7. Any back pain issues before all of this started?

Take care everyone and keep sitting on those ice packs.

hugs

The burning bush
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 11:19 am

I had yeast, uti and back pain

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Re: Looking For Answers. Comparing Notes.

Post  BpCookie on Thu Feb 21, 2013 4:01 pm

Hey Alana hun, no hormone problems? Like messed up periods, skipping periods or having them too often? Just wondering. Also, did you have back problems before all of this happened or after? Before the Vulvodynia, my upper back and neck hurt, then about one year after I got this, my lower back and tail bone started hurting. I think the lower back is due to how I sit because it hurts too much to sit the way that I normally would.
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:31 pm

I mean my periods were crazy before I got on birth control, but I was 14 when I got put on it and haven't been off since and I'm 27 now. But, my periods were crazy and super heavy, but its apparently a very common problem and supposedly changes after you go thru puberty, but I like my pill too much to get off it. My periods screwed up after my vestibulectomy and I was on BC, but it was because of anaesthesia. Its back to normal now, thankfully. I have tight muscles, and my lower back and hip hurt pretty bad especially right before my period- but I have to say I am a very active person, I horseback ride, workout, yoga, zumba, etc, so I don't really know what is connected and what isn't. Have you done acupuncture? It works so well!



I seriously don't think you're going to find the why to your problem, I finally just accepted it, it would be like trying to figure out why someone got Leukemia or Lupus or something. They're both terrible, but there's probably not an answer to the problem. But more importantly, there is a fix. I would think that would drive me crazy thinking everything causes it. And honestly, there's nothing you can do about it, shoot for a cure, not the why's.

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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:36 pm

And that last part wasnt meant as bitchy, I'm like an hour before my periods coming and my hooha is on fire what a terrible feeling, I hate my vag!

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Re: Looking For Answers. Comparing Notes.

Post  Kathy100 on Fri Feb 22, 2013 12:47 pm

Hi,

1. Yes - have breakthrough bleeds (even thou on pill) which last about a week - moods go haywire & feel very tired. After doing ultrasound /hysterscopy / smear - gynae now thinks hormonal - possible start of menopause. I'm 47. Happy days.....

No STDS or yeast infections.

4. Yes - but not internally.

6. Problems with UTIs (but tests always clear) & pain with sex long before I was diagnosed & told all in my head.

7. Used to get pain in shoulders & neck before it started but think that was down to sitting in front of PC all day. Now get muscular pain in tailbone, across backside and down my legs...am doing stretches for this which help. Lower back is starting to hurt too... The pain is worse around the breakthrough bleed time. I was pretty active before this started zumba, gym etc. Now I don't have energy to get through Zumba class ... Got an appointment at the pain clinic today so am hoping to get some answers. The specialist I saw thinks mine all started with IBS, aggravated by the UTIs and gradually got worse so now my whole pelvis is clenched up which is causing all the pain.

Take care & good luck xx

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Re: Looking For Answers. Comparing Notes.

Post  Kathye10 on Fri Feb 22, 2013 5:22 pm

The Burning Bush....That's what I call myself at this point...haha.

1.) Not sure, haven't had my hormone levels checked yet.
2.) No
3.) No, but I've showed positive (recently) for a few different types of bacteria which were treated by numerous antibiotics, externally and oral pill form.
4.) Externally
5.) I get yeast infections once every few years, but nothing a 3 day treatment didn't cure.
6.) Never had one before (thankfully)
7.) Always had lower back problems. Core is not strengthened at ALL, which I believe is why my back is so messed up

I know V is not the a "cause", it's a symptom of something deeper. I am going to see a specialist in a few weeks to try to pin point what might be the cause. I'm going to assume it's either over medication and my nerves decided to have a party down there when no one invited them OR from all of the pain, my pelvic floor muscles have tightened so badly that this is my "cause."

It seems like the women who finally pin point the cause usually get better or make a full recovery. I'm wishing that for ALL of us! Very Happy
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Re: Looking For Answers. Comparing Notes.

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