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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 2

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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


New to vulvodynia and searching for solutions

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New to vulvodynia and searching for solutions

Post  justbecca28 on Sun Dec 07, 2014 12:39 am

Hi,
I am 30 and was just diagnosed with vulvodynia about 6 months ago. Since the first time I had sex, when I was 16, I knew there was something wrong. My bf at the time couldn't even penetrate, and when he finally did, the pain was unbearable. To this day I have never had sex without pain. I didn't even understand that what I was experiencing was not normal until I was probably 20. I thought to myself - everyone experiences pain when they first have sex right? Maybe I just need to have more sex and the pain will go away? Well, a few years and a few boyfriends later, the pain was still there. I was so embarrassed and ashamed and didn't have a clue how to talk about it with anyone. I got married when I was 22 and for the first time saw very clearly that something was not right, and how badly it would affect my life if I did not do something about it. I was able to share with my husband what was going on and he encouraged me to talk to my doctor. This started a long and aggravating journey of Dr's basically telling me there was nothing wrong with me, and that I just needed to engage in more foreplay. I gave up hope that there was an answer until a year and a half ago, when a therapist I was seeing assured me that what I was experiencing was not normal, and that there are solutions. Due to lack of insurance and other life circumstances I was not able to see a specialist until this year. That's when I found out that what I have been suffering from is called vulvodynia. I also found out that they don't know the cause or have a definitive cure. Ugh. Well, two steps forward and one step back, but that's ok. I'm still one step forward.

Surprisingly I have been able to maintain a fairly healthy marriage for 8 years, but the lack of sexual intimacy is really starting to take a toll on both of us and I am in search of solutions. As I have searched the web and read posts on this forum, I see that my symptoms are pretty mild compared to many, and I am thankful for that. I don't think my pain is nerve related, but seems to be more of a combo between skin irritation (maybe food/chemical allergy related?) and a hormone imbalance. Honestly, what I am looking for is just people to have a dialogue with, and natural solutions. I hate the idea of putting chemicals into my body for the rest of my life. If you can relate, I would love to chat and hear your suggestions and stories.

Thanks for reading!

justbecca28

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Re: New to vulvodynia and searching for solutions

Post  EverythingIsDifferentNow on Sun Dec 07, 2014 5:04 pm

Hi newly member (: I've been a member for a few months now and have traveled a long, hard road to recovery. I'm 16 by the way. What really helps me more than anything is EXERCISE. Every. Single. Day. If you do not know what to do, try ab challenges you find online. They really help. I also take vitamin pills and don't eat too much junk food. Also DIET has A LOT to do with your body, especially your vagina. There are cures out there, it is NOT incurable. If your body was able to produce this terrible condition, it is able to reverse the situation. So find out about your diet, do exercises that work out your core and abs, and find out if your spine or pelvis is causing the problem. My spine (I have mild sclerosis) is a factor to my vulvodynia and i've been doing physical therapy to help me. Anyways let me give you some tips:
-don't use tampons, use pads (unscented)
-find out what detergent your using, it can be a cause. Sounds weird, but I know people who have had vulvodynia because their detergent had been irritating them down there causing all sorts of problems. Make sure it's unscented also (:
-loose fit clothing
-heating pad works wonders for me, but an ice pack works wonders for almost everyone
-vitamin pills (all natural)
-exerciseexerciseexerciseexercise (this is my cure or excellent treatment for me)
-don't go to the pool or beach
-change your pads frequently throughout the day
-look up more treatments for vulvodynia and please RESEARCH. If i had not researched about this excessively i would have not found my cure which is simple and easy. Please please research as much as you can. Lots of love xx
P.S. Never give up sunny

EverythingIsDifferentNow

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Re: New to vulvodynia and searching for solutions

Post  justbecca28 on Sun Dec 07, 2014 7:21 pm

Thanks for the tips! I just started to implement some of these things - new detergent, etc. So it's good to hear it's working for you. And nice job at taking charge of your health at such a young age! Your body will love you for it later. Smile I've always led a pretty active lifestyle so I think I've got the exercise thing down. Hopefully with the help of other things, it will all work together to make a difference. Thanks again! Smile

justbecca28

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Re: New to vulvodynia and searching for solutions

Post  Alana3 on Mon Dec 15, 2014 7:46 pm

I jumped through a ton of hoops before a doctor would do surgery on me and I am so happy with it. I can have sex painfree now (not to brag, I was in your shoes for 7 years and it absolutely was terrible, so I can relate). Things I tried before I went to surgery, and hopefully they help you better then me:

Estrace (didn't do shit my doc said Vulovynia was only due to not keeping clean BULL SHIT my hooha is very clean she was stupid)
Coconut oil
Low oxalate diet or whatever
baking soda wash (helped but not for long period of time)
various compounds... meh gabapentin, amitryptyline and lidocaine
acycolvir- no I do not have herpes and run like hell if anyone gives this to you for vulvodynia. It's not a treatment
Various sopositories (fun shit I love shoving shit up my vagina)
Various vitamins
changing pads blah blah blah
loose clothing
changing immeadiately from wet clothing
At any rate, none of it helped so I got the surgery, very happy with the outcome hope this helps some...

Alana3

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Re: New to vulvodynia and searching for solutions

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