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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

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: 9

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


Desperate for advice. Bad flare up.

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Desperate for advice. Bad flare up.

Post  sailor_moon on Tue Feb 10, 2015 3:41 am

A few questions to my lovely ladies, any advice would be much appreciated

Does anyone else go through bad flare ups where their "innie bits/vulva" actually become swollen? I have been in so much pain the last 3 days I have been unable to go to work [use the excuse I have a migraine and vomiting], and I am so red and swollen..it's all puffed up! I have been sitting with an ice pack between my legs. nothing gives me relief.

Does anyone else get more irritated the more active they are? The more I walk, the more burny, itchy and chafed I get.

Any tips apart from the usual Lignocaine, ice pack, coconut oil and anti-inflammatories on how to get some relief? Steroid creams and other emollients make me worse. Lignocaine and coconut oil are the only things I can use down there...the pain is so bad atm the lignocaine isn't doing much.

Does anyone else on here suffer from low estrogen? I have low estrogen but my doctor suspects I have endometriosis which feeds on estrogen. I am on a waiting list to have a laproscopy and hystoscopy but the hospital informed me yesterday that I will be waiting up to 10 more moths before my op because the waiting list is so long!! I will be talking to my specialist to try and get him to push it through quicker, I will end up killing myself, unemployed or divorced if I have to wait that long with no form of relief!! I can't take any HRT until the operation gets done. Mad

Has anyone had success with alternative medicine or naturopaths? I am really considering going down that route because I am having no success with western medicine. I am just sick of spending money on remedies that do not work.



And lastly....any tips on how to cope emotionally? I am slowly going downhill again, its coming up to the 2 year anniversary of having V and I am finding it extremely hard. Especially with dealing with being in pain and discomfort at work when you can't escape to "adjust your undies" and are in agony but have to smile and deal with people. I am finding it harder and harder to work like this! especially when I have horrible bosses who have threatened to fire me for having time off dealing with my combined illnesses and hold the health issues I have against me. Also I am finding it hard to cope with not physically being able to have sex with my husband...I try my hardest but with the discomfort of V it has shut down my emotions for intimacy because the discomfort is all I can focus on. I feel constant guilt because my husband deserves a normal, good wife, and a he deserves a great sex life. He has stuck by me through all of this but I cant help thinking he will leave me sooner or later because you cant have a normal marriage with someone who has V. I'd be lying if I said this hasnt affected our marriage. Being young is even harder...we are meant to be at our sexual peak. And wanted to have a baby soon but that's impossible...I am in enough pain and I think pushing out a baby would do more permanent damage to my vulva...let alone the pain of labor with V!!!!

Any advice would be much appreciated ladies.







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Re: Desperate for advice. Bad flare up.

Post  kvelipuri on Sun May 17, 2015 6:56 pm

Just a note to let you know you are not alone - I too am suffering from severe swelling. The swelling goes up and down, but at its worst my vagina is totally swollen shut and walking is out of the question. No creams have worked - steroid, estrogen, or lidocaine - and in fact seem to correlate to more swelling (but who knows if there is actual causation). Anyway, still working on a treatment but wanted to let you know I'm going through the same, as it seems this kind of swelling is not a predominant symptom at least based on reading most people's stories.

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