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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: 1

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: 8

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.

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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 …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Introducing myself :)

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Introducing myself :)

Post  neverlosehope on Fri May 30, 2014 9:24 am

Hi Ladies,

I don't even know where to start with my story. It's so long and involved. I'll try my best though. Perhaps it will be therapeutic?.. Forgive me if my wording is a bit free. I'm just having a chat to you and getting things off my chest. I just don't know anybody with this condition and feel so alone in the world...

However, throughout this whole ordeal i've never given up hope. I try to stay positive and count my blessings. I surround myself with people who fill my heart with joy. I've quit my office job and am currently back at uni studying music, following my passion. In short, I try to make every day count and not let this motherfucker get me down (excuse the french but surely you agree the name fits).

Now, my story -
I'm 33 years old. I live in Brisbane Australia. I started getting pain on my vulva in 2006 and have been to hell and back for 8 years now.
I've seen 5 Gynacologists, 3 dermatologists, countless GP's, Physio's, Chyro's, Naturopaths etc etc...

After trying many different avenues, I eventually opted for surgery in 2009, as I just wanted it over and thought cutting the painful area away would surely work. Back then it was provoked vestibulodynia. There was no generalised constant pain.
I had a full vestibulectomy in January 2009. The particular area which was the source of the pain (6 o'clock, bottom of vaginal opening) did stop hurting and I was almost pain free for about 3 months. Afterwhich a new pain arose, this time at the left side, near the opening to the vestibular gland (3 oclock).
This is the area that still hurts the most today. In addition to that, I now have a constant mild burning, sometimes itching sensation all over the inner skin of the labia. So it's now both provoked and un provoked vulvo/vestibulodynia.

I am blessed in that my pain is not so debilitating that I can't sit or sleep. And am able to have sex if I'm well lubricated, though it's never completely pain free and after a while friction takes it's tole and I have to stop.
Luckily for me my boyfriend is still satisfied, and we find other ways to have a fulfilling sex life. He has not been part of my journey for this whole time. We met a couple of years ago. To be honest, he doesn't know the extent of my history and suffering, as i'm afraid it will affect our relationship, as it has all of my previous ones.
I even had a lesbian relationship for a year, hoping that not having to have penetrative sex will be the answer, but of course at the end of the day we can't control who we are attracted to on the most basic and animalistic level. So That didn't work out...

Back to the facts though, medications i've been on:
Amytriptaline - 10mg a night with some success but in tolerable side effects. I could not function. Was on them for 3 months and stopped.
Nortryptaline - was on 25mg for the past 2 years, now cut back to 10mg as I want to see if they were actually making a difference.
Definitely having withdrawl's, trouble sleeping and the blues... thought they weren't meant to act as anti depressants but perhaps they were taking the edge of a bit.
Lyrica - 50mg a day for 3 months . Some pain relief, however, again, felt like a complete zombie and side effects did not subside. Also gained weight very rapidly. Would consider these again but i'm trying to get my body healthy for pregnancy and these are apparently dangerous if you get pregnant.

I am very sensitive to meds and obviously even very small dosages affect me significantly.

Topicals- Phew, where to start?...
Cortisone creams - all sorts, in all different bases and strengths. Never worked for me. If anything they made things worse.
Estrogen cream - caused severe thrush like irritation. tried those little tablets you pop up in the vagina with an applicator. Same reaction.
Testosterone cream (compound) - tried this to thicken my skin as it was very fragile after the surgery (and still is). It worked for that, but I freaked out and stopped because my clitoris became enlarged. It increased my sex drive immensely too. Now I know how men feel all the time haha... that was the good part.
Anaesthetice - various strengths. Emla burned like hell. Gels don't work for me because of the irritating ingredients in the base. I'm now trying a 5% Xylocaine ointment. It burns slightly on application but that's all. I'm going to try using this once a day for a few days and see if it causes irritation. I'll keep you posted. Would definitely be good for pre sex though I haven't tried yet.
can any of you tell me in their experience if it would numb my partners penis? I would only use a small amount and try to remove any excess. I would use a condom but can't as they pull on my skin and hurt Sad
Over the counter -
Zinc oxide (nappy rash cream), my skin didn't like it. Too thick and caused mild irritation
Bepanthen ointment - same story. Good as a barrier though.
1% cortisone ointment - irritating
Vitamin A cream - same
Lanolin - Bad!
vaseline - was fine as a barrier but I don't like the idea of petrolium down there.
Pawpaw ointment - realised that was mostly petrolium anyway so same story
I'm sure there where others but can't remember at the moment. basically my skin doesn't like anything cream based or thick.

Oils -
Emu oil - very thick and smells strong. made my labia feel sticky
Olive oil - pretty good. Soothing for those itchy days. Make you smell like salad dressing though.

COCNUT OIL - Now ladies, this is where it's at. I love love love it. Make sure it's organic. I use it to soothe and moisturise my skin. It's amazing. It smells divine. AND it's the best lubricant i've ever used. I usually use a bit of 'silk' lubricant as well to make things a bit more slippery. Coconut oil is light, it washes off in the shower, it's edible and really soothing. I highly recommend it for symptomatic relief.

Everyday life - I use nothing with fragrance, only wash with water or sometimes cetapyhl if i'm on my period, My laundry detergent is hypoallergenic and fragrance free, I only wear cotton underwear.


I've been seeing a physio in Brisbane who specialises in pelvic floor dysfunction. She is amazing. If any of you live here i'd be happy to give you her details.
Definitely make sure you address the muscular issues before going for surgery or any invasive procedures. I didn't and I now believe that was my first mistake. I have very tight muscles at the opening of my vagina, within the first 3 cm or so. I try to do stretch whenever possible as that really helps with the pain also and makes you prepared for sex (as much as you can be).
And also mentally remember to let the muscles go. I am constantly pulling up my vaginal muscles so have to consciously let go.

I am now seeing a new gyno who seems to know what he's talking about. he has a special interest in vulvar pain management.
The last procedure i had was an anaesthetic injection into the area behind my most painful spot. It numbed the area for an hour or so but that's all. Enough to know that if that particular area is healed (by some miracle...), i could be close to pain free. With only the mild constant irritation persisting. With everything i've been through i could deal with that.

Now.. He's scheduled me in for another procedure on the 18th of june. Another injection, this time a longer lasting anaesthetic plus cortisone to reduce inflammation.

Which brings me to my question for you - has anyone had this. NOT to the pudendal nerve but to the flesh surrounding the vulva. If so, have you had success? or the opposite, did it make you flare up? I'm really scared it will make things worse. Your advise would be so appreciated.

My gyno says if this doesn't work we may need to look at surgery again. He believes the sore area is a result of scar tissue or a puckered stitch from my vestibulectomy. It would be a very small incision but again, i'm petrified it will make things worse.

Thank you to all you brave women for sharing your stories and for listening to mine. I already feel better having purged on the page.
I'd love to start a little support group in Brisbane if anyone's from here. It would be so great to be able to talk freely about this.

Please stay positive and maintain your fighting spirit. Never give up hope. I know things will get better.

Love and strength to you all
xxx
Netta







neverlosehope

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Re: Introducing myself :)

Post  Leslieg on Mon Jun 02, 2014 5:09 pm

Thank you so much for sharing your story!!!!!
Let us know if the treatment is successful!
Smile

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Re: Introducing myself :)

Post  Alana3 on Mon Jun 02, 2014 6:10 pm

I've had a vestibulectomy it worked really well for me!

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Re: Introducing myself :)

Post  neverlosehope on Tue Jun 03, 2014 4:34 am

Will do Leslieg. Alana - so glad the op worked for you. I'm pretty sure I'm going to have to go in for a correction. mainly because I was not instructed correctly regarding post op care. I wasn't given laxatives after my op so when i went to do a number 2 my stitches ripped. I had a fentons repair as well as a vestibulectomy as my vaginal opening was tiny. my stitches ripped on my perineum and my doctor told me it would heal the same way anyway and not to worry. I believe it changed the tension on the rest of my stitches and surrounding skin, causing it to be very delicate and prone to tearing.

Lesson - If any of you do go for the op. A. make sure you're given laxatives immediately post op, and physio to massage the scar tissue away once healed. I would consider the op a very last resort. I regret having done it as it's changed the appearance of my vagina which i'm now self conscious about, and I believe mine started off as a hormonal/skin issue as a result of going off the pill after many years.

In short my dr whom I trusted was an idiot.

So infuriating...

Has anything worked for you so far leslieg?

Love love, NLH

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Re: Introducing myself :)

Post  Alana3 on Tue Jun 03, 2014 4:14 pm

Ouch yeah my stitches ripped too!

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....

Post  lavrose on Fri Jun 06, 2014 3:19 pm

GIRL!! Coconut Oil!!! Holla!!!! Razz 
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Re: Introducing myself :)

Post  Sebby (Admin) on Mon Jun 09, 2014 11:11 am

Welcome to the forum, hope you do find the right treatment for you soon, it's often a long road but it's good to see your not giving up hope x
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Re: Introducing myself :)

Post  tinkerbelle2 on Wed Jun 18, 2014 9:31 am

Welcome to the forum Smile cheers xx
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Re: Introducing myself :)

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