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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Will it ever go away?

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Will it ever go away?

Post  Sallyjane on Wed Feb 05, 2014 9:49 pm

I'm 19 and have been diagnosed with vestibulodynia. I am seeing a specialist who has said that I'm exaggerating and his only given me a canestan cream. This does nothing. I cry all the time because this is completely ruining my self esteem and my relationship. I never want to have sex because it burns and whenever I do we have to stop & I go & sit in the bath for hours after in tears. Plus it gets worse to wear jeans & whenever I wee after not going for a few hours it burns. I can't cope with this, I don't feel normal. I tried amitriptyline but when it didn't work after a month my doctor took me off them. I just want to know if anyone has been cured because I need a glimmer of hope to keep me going

Sallyjane

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Re: Will it ever go away?

Post  Alana3 on Wed Feb 05, 2014 11:16 pm

Find a different doctor you're not exaggerating and I don't think anyone should say that

Alana3

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Re: Will it ever go away?

Post  alessandria on Thu Feb 06, 2014 5:42 am

So many hugs. I can tell you honestly that it does get better for many, many people. One thing I think many doctors don't fully explain about vulvodynia is that it's actually just a descriptive term to mean "vulvar pain", and doesn't actually tell you anything about what caused it. I'd argue that most causes are very treatable, but it takes a lot of persistence to figure out the cause and the effective treatment. And it is going to be very, very different from one woman to the next: probably every woman on this website has a different cause, and will have a different effective treatment because of that. Find a doctor who will really, really work with you, and don't give up. Use your support net too; you can talk to me, and talk to anyone on this site when you're feeling low (which happens to everyone going through this), and we can help keep you going.

To answer your question...it took me almost 2 years to get better, and it was absolutely debilitating at its worst for me. I'm also young like you, and it was the most heartbreaking experience because I was certain it meant I'd never get to be in a normal relationship ever again. I cannot pinpoint what particular thing I did that ended up getting me to where I am now, but I can tell you honestly that I am completely symptom-free these days. No day to day pain, no pain with insertion, no pain with tight jeans, no pain at any time of my cycle, nothing at all! Though I got better initially with improved nutrition/exercise, getting off of hormonal birth control, and switching to less irritating clothing, what really has gotten me to 100% is a knowledgeable physical therapist. Some people get better with surgery, some people get better with medication, some people get better with physical therapy, but the thing I want to emphasize is that people CAN and DO get better. There is hope. Keep holding on, things will improve in time.

alessandria

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Re: Will it ever go away?

Post  Sallyjane on Thu Feb 06, 2014 9:38 am

Can you tell me what things you tried? I know you said it's hard to pin point and everyone's different but I need any advice I can get at the moment. Thanks for your reply

Sallyjane

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Re: Will it ever go away?

Post  alessandria on Thu Feb 06, 2014 12:12 pm

Big things for me:
1) Good diet: Our nutrition profoundly affects many aspects of our health and well-being, and I think has particular importance to vulvodynia treatment because it might help balance vaginal flora, too. I have reduced things which are intuitively less healthy, like simple carbohydrates, and increased things which are intuitively healthy, like complex carbohydrates, protein, and healthy fats. I have reduced alcohol intake from a few times a week to maybe one glass of wine a month.

2) Exercise: If it does not cause you significant pain to do so, I highly recommend an exercise program. This also ties in with the general principle that most chronic conditions can be improved with lifestyle improvements. It can be very challenging for some vulvodynia sufferers to exercise, depending on what type of pain they have. I started running and doing a lot of cardio. If you can find a way to be physically active without it rendering you in a lot of pain, it can be very helpful.

3) Clothing: Seriously, get 100% cotton panties, or at the very least ensure that the entire lining coming into contact with you is 100% cotton. I didn't really believe my doctors when they told me this could have any impact, but I noticed a big change from my lacy / stretchy / satiny panties to purely cotton ones. Also, try to use hypoallergenic laundry detergent, as some vulvodynia is thought to result from chemical sensitivities.

4) The Pill: This is a more challenging one if you are currently sexually active, but another theory of what causes vulvodynia is related to hormonal contraceptives. I think going off of the pill is probably what led to one of the biggest improvements in my own condition. If you are on the pill, I still would honestly try other things first if you are still sexually active, since it may or may not be a trigger for you and it is still important not to get an unintended pregnancy. If you are on the pill, but do not have any cervical inflammation or deep vaginal pain, I'd strongly consider switching to an IUD.

5) Physical therapy: Get a referral ASAP to a pelvic floor physical therapist, who can work with you early on to ensure you fix any current pelvic floor dysfunction you have so far, and prevent any progression in pelvic floor dysfunction. Seek out someone who specifically has worked with vulvodynia before, if at all possible. Most women with vulvodynia will develop some degree of pelvic floor misuse as a reaction to the pain, and additionally, muscular spasm is thought to be another common cause of vulvodynia pain. You can expect a good physical therapist to work with you not only on the internal side of things, but understanding how to better support and ease burden off of the pelvic floor by strengthening other muscles in the core, the hips, and the legs.


As far as having sex goes, I would really strongly advise holding off on penetrative intercourse until your pain level goes down. Not all of sexuality is penetrative intercourse alone -- you can still be with your boyfriend in a ton of different ways that don't require you to put yourself in pain. A lot of vulvodynia sufferers end up destroying their libidos by subconsciously training their brains that sex results in pain, which is a problem that can be really hard to fix even after the vulvodynia symptoms get better. Purchase a good set of dilators if you can afford it, and figure out whether you're ready for sex or not by using those first. If you do attempt sex, use a ton of lubricant in order to minimize any sources of irritation.

And finally, get a different specialist! Anyone who says you're exaggerating is probably not keeping up on the medical literature, which has acknowledged vulvodynia as a widespread problem for years now (up to 14% of women get it!). You will need someone more knowledgeable and more compassionate -- it's never a good sign if a doctor openly won't take their patients' word at face value.

I hope this helps, don't hesitate to ask me anything!

alessandria

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Re: Will it ever go away?

Post  Alana3 on Thu Feb 06, 2014 12:31 pm

I had surgery it went away

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Re: Will it ever go away?

Post  Mariek on Mon Mar 09, 2015 7:51 pm

I was told 100% cotton panties, no fabric softener when I wash my undies or anything else I could come in contact with. Only clear and free detergents and use only half of what they say. No soap or shampoo in that area, just water. Backing soda baths, no bath oils and loose breathable clothing. I was just diagnosed last week, using lidocaine and proclaimed to numb the area when needed. I agree with Alessandra, find a different doctor.

Mariek

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Re: Will it ever go away?

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