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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 …

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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 …

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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 …

Comments: 4

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


hi all new possible diagnosis of vulvodynia

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hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:27 pm

I just went to my GYN nurse and she believes I have nerve pain and she wants me to see a vulva specialist. I am B R O K E! We live in the US , have insurance through my husband's work but it's minimal. The last time I had female pain it was constant cramps and they said I had a weak lower pelvic floor. I went to a female physical therapist.  The out of pocket expense was over $700! I knew I most likely would need a female pt again after giving birth. What did you all do for vulva pain? Any tips even if sexual/gross, would be appreciated.

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Re: hi all new possible diagnosis of vulvodynia

Post  bvnh13 on Wed Jul 16, 2014 6:54 pm

My Vulvodynia is nerve related..I did not relief until my ObGyn prescribed me Lyrica and Elavil....The Lyrica is very expensive its over 500$ , theres no generic yet. Im lucky that i have great insurance that will pay for it. Other things is I eat a low Oxalate diet, take vit e/a/b12/b6/zinc, omega fish , grapeseed extract/aloe capsules/calcium citrate/magnisium and potasium. I drink only high PH water (8.Cool and wear white cotton underwear only. Aveeno oatmeat baths help too. I also get acupunture every week. Im about 90% pain free now and if I start to get irratated Its like 2/10 and doesnt last long at all...hope you get relief soon

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 6:59 pm

I would prefer not to take lyrica! Can't do the other stuff you mentioned either Sad .

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Re: hi all new possible diagnosis of vulvodynia

Post  Caropes on Wed Jul 16, 2014 8:00 pm

Hey Princesst124. Where in the u.s. Do you live? How long have you had problems? What is your history. I was recently diagnosed and am still in the process of finding treatment.

Caropes

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Wed Jul 16, 2014 9:20 pm

I live in the states and finally had surgery to get rid of it but you have to jump thru hoops for that. Where do you live?

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:39 pm

Boston area.

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Wed Jul 16, 2014 11:41 pm

Caropes

I thought I replied to you. not sure if it didn't post or got deleted for some reason. I have polycystic ovarian syndrome, hyperthyroid, obesity caused by the previous, endometriosis, and anxiety.

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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 12:42 am

Dr Goldstein is a good doc if you haven't already seen him Smile

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 12:51 am

Thanks Alana but I got a recommendation for someone in Burlington. I live closer to there.

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:27 am

Hi Princess, I go to the specialist in Burlington, ma too. I hope you're pain free soon.

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Re: hi all new possible diagnosis of vulvodynia

Post  Leslieg on Thu Jul 17, 2014 1:33 am

While you're waiting for an appointment, the standard stuff is:
Minimal soap there, only water; cotton underwear only; rinse w/ little water bottle after urinating; ice packs or frozen peas (20 min); warm water soaks; loose fit clothing.
Monitor pain to determine triggers....
Some girls have tried coconut oil to soothe. If its truly nerve pain....ice packs will be your best friend. xo

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Re: hi all new possible diagnosis of vulvodynia

Post  princesst124 on Thu Jul 17, 2014 11:06 am

Leslie,

Luckily it's only when touched. So it's got to be nerve pain. I do wear cotton panties, I never use soap inside unless I feel gross from menstruation / discharge. I have noticed I'm itchy though alot lately is that part of it? I still have my water bottle from giving birth , I could rinse with that. And I LOVE ice for muscle pain. It will be interesting to see what she can do. I would prefer not to take any meds if possible maybe just before intercourse would be ok. The topical sounds interesting but I don't want it getting on my husband.


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Re: hi all new possible diagnosis of vulvodynia

Post  Alana3 on Thu Jul 17, 2014 3:04 pm

When I was going thru vulvodynia, I used a baking soda and water combination made it into a paste and put it down there for about ten minutes and washed away with warm water.  Supposedly baking soda allows your pH to become a little more normal and I will tell you I had INSTANT relief.  I did it twice a day and it allowed me to get thru my day a little better.  Also, massage and/or acupuncture helped me a lot.  If yours is only when touched, you sound a lot like me!  Mine started to get worse towards the end because my muscles were compromised as well at that point.  I also tried physical therapy- before and after my surgery and got relief both times.  My doc made me a compound of amitriptyline/gabapentin/lidocaine which I applied 3 times a day.  This was so I wouldn't get any of the side effects common with the oral drugs.  I would apply it right to the area for 6 weeks.  It unfortunately didn't work for me, but my doc has gotten a good response about 65% of the time.  So it's something to maybe try!

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Re: hi all new possible diagnosis of vulvodynia

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