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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 …

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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 …

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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 …

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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, …

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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 …

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3 years down the line..

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3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 11:16 am

Hey everyone,

Ive been dealing with this condition for around 3 years and i am now 20 years old. My biggest problem with the pain is inserting tampons, sex etc, i have had no relief over the years dispite trying the different medications and being passed from pillar to post through all the different doctors/gynaecologists.

I have been looking at this forum everyday for around 6 months or so and have just had the courage to join, it's such an isolating condition and im at a stage now where im really depressed and can't enjoy my life. I have recently started seeing a guy that i really like, but feel i am stringing him along, our 3rd date is next week and the subject of sleeping together is bound to come up soon. I feel like this is the worst thing anyone could go through at this age & the guy is a year younger than me which doesnt help - what 19 year old guy is gonna stick around knowing i can have sex? pale

I have another appointment with the doc on monday to see what the next course of action is, i am also seeing a physiotherapist but this isnt helping and my appointments are almost 3 months apart (i get the impression she isnt interested either).

Feel like a weight has been lifted off my shoulders almost after writing this post, maybe talking to you girls about this condition will help after all.

Thanks for reading x

Newbie2012

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 11:49 am

Another thing i meant to add..

I havent found the root of my problem with v yet.

I always have extra discharge down there and notice before i have a shower/bath that there is white bits on my vulva, which i thought was a yeast infection although was treated for this and it did not help. When i first started having problems i had a boyfriend, sex was ok at first and as the year went on it slowly got worse to the point where it is now impossible. When we met i went on the depo provera jag, i have no idea if this is the cause of all my problems, or if the fact i started having alot of sex has somehow damaged me down there (i had only had sex twice prior to that relationship).

I have so many questions about this condition my head could explode Sad

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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 1:00 pm

First and foremost if that's all a guy wants he's not worth your time. However I do understand where you're coming from it was pretty much the same for me. Have you tried anything for the v? I don't know if you'll ever find out exactly why it was caused but it doesn't matter all that matters is getting well. Where are you from what kind of treatments have you tried? Remember you're not aloneays thought I was but joining a support group is the greatest thing you could do o unless you have this issue no one knows how hard it really is and that's it not just sex and pain but emotions too Sad

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 1:13 pm

Thankyou for the reply. Im from Scotland and have tried amitriptyline & gapapentin but couldnt cope with the side effects, not to mention they werent helping in the slightest anyway. At my doc app on Monday im going to mention the lidocaine gel also. I bought some dilators recently aswell but i want to speak to my physio first before i attempt to use them.

Have you had any success at treatment?

Thinking about telling the guy i am seeing i am just not interested, cant cope with the embarrasment of having to tell him about this problem Embarassed ..although the thought of being like this when it comes to relationships for the rest of my life is depressing!! Sad




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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 2:32 pm

I'm headed for surgery next week I'm done with the mindless medications that don't work. My doctor put me on the meds you've tried but as a compound that I topically applied, maybe that will work for you?? I have tried physical therapy it helps with muscle but the skin OMG still hurts so bad Sad

As for the boys trust me I get it, I hate even dating it makes me uncomfortable because I don't know how they'll react to my hooha. It's such an annoying issue ugh

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 5:58 pm

Surgery is something I've been thinking about for a while. What kind of surgery is it you are having? I've read about a few different types. Fingers crossed for you that it cures if not reduces your pain! Are you in the UK aswell?

With the cream did you get this from the gyno or was it a dermatologist? Definitely something I will mention at my next appointment.

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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 6:36 pm

Actually, I'm in Florida, so a ways off from you. Where in the UK are you located??

I'm getting a partial vestibulectomy- if I don't chicken out- I have my pre-op tomorrow. I can let you know how it goes if you'd like. I got my topical from my gyno he belives that I shouldn't have to have really bad side effects if it can be applied elsewhere, which I really liked. Unfortunately, today I have a lot of pain, (mine is usually provoked but when it gets close to my period it's pretty bad) but I guess it's good for my appointment tomorrow. I don't want him to leave anything off get it all. This is so debilitating (now the pain feels like its all over although I know it's only in one spot ugh!). What kind of surgery were you looking for?


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Re: 3 years down the line..

Post  Newbie2012 on Wed Nov 28, 2012 11:20 am

Im not actually that clued-up about all the surgery for v, although ive read a few things on the net. Probably something i should have a talk to my gyno about however ive also heard they are reluctant to perform surgery for this condition, only do it as an absolute last resort.

Thats not good to hear you were having a bad day with pain yday Sad those kind of days are the ones that make you feel really down & out more than usual. Good luck with the pre-op & please let me know how it goes!




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Re: 3 years down the line..

Post  Alana3 on Wed Nov 28, 2012 7:54 pm

So my preop... I'm not going to lie it hurt really bad they did the mapping, basically I told them where it hurt he drew on it and he took pictures of it to bring it in the OR with him. But omg it hurt. (I keep telling myself only a little more pain for a little while longer).

I told the doctor that I was scared to death. He said it was normal, and that he personally had only success stories and that I'd be 90-95% better if not all the way. He showed me EXACTLY(my pain was spread over a way bigger area than I originally thought) what he was taking off and explained the procedure. Until I actually talked to him about it I was crazy scared. He told me he used tiny sutures so that it wasn't as uncomfortable and that I could go back and do everything I'm doing now (which includes horseback riding and zumba) in 6-8 weeks. He also said that the pain wouldn't be as bad as I thought and that I'd probably be wanting to get out of the house within 5 days or so. I feel a lot more confident then I did even yesterday.

I just feel that this is the best way to go at this point, nothing else has helped, and I can't stand being in pain anymore than I have to. Also, the nurses and such in the hospital said I had a really good surgeon and good odds, so I feel OK. My doc tried a lot, but unfortunately, after I got to him, I was just fed up with failed treatments (its been about 6 years of pain, and 4 years of knowing something was really wrong, and countless doctors) so I told him I'd try one more thing, and it failed, and even made it burn. He was just like it's not worth being in pain and that's when he recommended surgery.

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hello people

Post  Dra.Cherrym on Fri Dec 07, 2012 7:54 am

I am from Nicaragua, i have been suffering from this for almost a year now, it started just a few weeks after i got married, it's better now but i am really afraid that this might come back, i'm trying to do everything i can to help, i want to try neogyn but i can't get it here, have any of you tried it? when i read what you have posted makes me more afraid because i have read so much that i do not now what to do or eat anymore, some people say oxalates, others say not to eat anything too acid. I need someone to talk to, to share this with, what experience have you had with the diet? i am relieve that i found this group, at least i know that i am not alone, and i pray everyday and ask God for help. F

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Re: 3 years down the line..

Post  Karen818 on Mon Jan 07, 2013 1:29 am

Try neogyn ladies! It has helped me sooo much words cannot explain how miraculous that cream is. I have suffered vestibular vulvodynia for years and only after 4 weeks of using neogyn i feel better! I am pain free 99% of the time, and sex is 99% percent pain free as well! This is a revolutionary discovery for women like us and I recommend all of you to give it a try, it won't hurt to try! My vagina is finally not on fire, but feels hydrated, cool and comfortable, I am so thankful to the creators of neogyn! So try that out see if it works, and sleep with no underwear at nights to less your vagina breathe and get some air... Good luck!

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Re: 3 years down the line..

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