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

Tue Jun 05, 2018 5:13 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 10:43 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 4:43 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 4:35 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 1:06 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 …

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you can be healed so easy and quite fast.

Fri Apr 27, 2018 12:46 am 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 …

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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 …

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19 years old..vulvodynia? need advice!

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19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Tue Sep 13, 2011 4:09 am

Hello everyone:). I just joined today hoping to seek some advice and comfort. I've been too gynos, dermatologists, and allergists. The gyno had mentioned vulvodynia last week and I am currently in the process of seeing a specialist but they said it could take up to 30 days to make an appt. after sending in the paper work so i'm getting a little frustrated. I'm not sure if this is what I have but I've been tested for just about everything. No stds, yeast, dermatitis, nothing. However, in the beginning of all of this they gave me flagyl (when i didnt have bv) and i think it caused me to get bv because 3 weeks later I got tested positive for BV. Symptoms persisted after taking second round of flagyl but bv went away. I did have sex during the time I got tested again for BV and it was painful. I'm not sure if the pain was from BV or this. However, i'm too afraid to have sex with my bf again for the truth of maybe having vulvodynia and for the fear of it hurting.

For 3 months now, any time I walk, run, touch roughly It feels irritated and slightly itchy. I do sometimes feel raw too. It never feels better but it never gets worse. It gets a little red but when i'm not wearing underwear i usually feel fine. Showering/soaking makes it feel normal but when I touch the skin it feels a little sore. I use 100% cotton undies. I am currently putting a lotion for sensitive skin on it (unscented) to give my skin a break from all the creams I've been using. Since about 7 days ago, I've been having a slight pain in my vulva that feels like an ache that continues to my thighs. Maybe a 2 out of 10. I've been on birth control since I was 15 so I'm not sure if BC has anything to do with it.

Does anyone have these symptoms? Does it sound like a type of vulvodynia? Sad I'm really scared things are going to get worse or not even get better? It's really frustrating. My mother and boyfriend have been very supportive but I feel like they don't understand what I'm going through. I would just like some comforting advice..maybe some answers to what im going through. The wait for the specialist seems like its going to take forever. Thank you so so much Sad <3

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Breathe

Post  mmorgan on Tue Sep 13, 2011 4:45 pm

Vulvodynia just is a term used when you have vuvlar pain without any known cause. This isn't a death sentence nor does it mean that what you are feeling right now will be the pain you will have to deal with forever. This burning sensation started with me about 2 weeks after I finished antibiotics for a fit of BV and a common link with the start of vulvodynia is antibiotic usage and HBC (hormonal-birth-control) though this is common in ALL women. A symptom of BV is painful intercourse. If sex hurts do not continue as it could cause Vaginismus (tightening of the pelvic muscles).

I highly doubt your symptoms will worsen, you already got the hard step out of the way by getting an actual diagnosis and a referral to a specialist. Just breathe, I assure you things will be okay and it WILL get better. Very Happy

If the pain is unbearable you can put ice or heat on the vulva as well as take some Advil, it works for me when I'm having a flare.



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thank you <3

Post  ilovebaxter1 on Tue Sep 13, 2011 7:43 pm

thank you so much! it feels good someone actually replied to me and understands what im going through. I called the office today to see how long it takes to get an appointment and they said around december...so i'll just have to wait it out until then! Shocked

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Re: 19 years old..vulvodynia? need advice!

Post  mmorgan on Tue Sep 13, 2011 8:13 pm

Just think positive, you have the support of your mother and boyfriend while some woman deal with this condition alone. If you ever have any questions or just want to vent feel free to do so in this forum. Smile
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Re: 19 years old..vulvodynia? need advice!

Post  mmorgan on Tue Sep 13, 2011 8:17 pm

Also I just read this website and it opened my eyes to the variety of treatments and answered some of my questions.

http://www.vulvodynia.com/faq.htm

I have been dealing with this since this May and your already ahead of me by being diagnosed. I still haven't found a doctor who can figure out what's going on though I already diagnosed myself. Razz
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Re: 19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Tue Sep 13, 2011 9:47 pm

thank you again! i just read that website you gave me and it was really helpful! i'm sorry to hear youve been having symptoms since may...This basically ruined my whole summer from all the doctor visits and creams! ugh! My boyfriend has been so understanding about all this but it's hard to deal with when we had such a good sex life before all of this. Crying or Very sad Do you have any other symptoms besides burning?

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vaginalpainhelp.com

Post  florence1009 on Wed Sep 14, 2011 5:55 am

You can also visit a nice website vaginalpainhelp.com
All about symptoms, pathologies, treatments of all kind of vulvar and vaginal issues...

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Re: 19 years old..vulvodynia? need advice!

Post  mmorgan on Wed Sep 14, 2011 3:32 pm

ilovebaxter1 wrote:thank you again! i just read that website you gave me and it was really helpful! i'm sorry to hear youve been having symptoms since may...This basically ruined my whole summer from all the doctor visits and creams! ugh! My boyfriend has been so understanding about all this but it's hard to deal with when we had such a good sex life before all of this. Crying or Very sad Do you have any other symptoms besides burning?

I completely understand how you feel things will get better. Have you tried having sex after you have cured BV?

I just have random burning in my vulva as well as close to my cervix. I think after I cut out my birth control my pain decreased from a level 8 to about a 2. Since then I've only had one "flare" and a muscle relaxer/pain killer combo did the trick on that one. I found that the foods you eat can contribute too. Does it burn after you urinate? For me I'm fine all throughout the night till my morning void and then the cycle begins but it's hard to find what triggers the discomfort. Some day's it has a mind of it's own. No
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Re: 19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Wed Sep 14, 2011 6:55 pm

omg 8 down to a 2 is so good Smile

my pain is probably more of an ache in the vulva that goes to my thighs sometimes even causing my calves to ache after i walk!! I haven't tried having sex yet cause I'm afraid it'll make things worse..and my boyfriend said that we should wait to see what the doctor says on friday cause i'm seeing my regular gyno while waiting for the specialist. do you think it would make it worse? I'm so clueless on all this! Rolling Eyes I am actually on my period right now and there is no pain at all when i put in a tampon so i guess thats good Smile It never burns when i pee..it did when I had BV. Also, I've noticed that any time there is any type of friction from my underwear I start to get really irritated and a little bit inflamed. I just took a bath a few minutes ago to let it soak and the swelling went down and its back to normal color but i know as soon as I change into underwear and start walking around with it on it'll start to get irritated. ugh! my gyno said that the nerve endings are hypersensitive to light touch from my underwear. she said we are going to try an oestrogen cream to see if it helps and if it doesnt i'm just going to wait until i see the specialist. scratch

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Re: 19 years old..vulvodynia? need advice!

Post  mmorgan on Thu Sep 15, 2011 9:24 pm

There are lots of ladies on here who have your same symptoms but I honestly don't have an external irritation. Mine's all internal. When it first started happening it felt like someone had a lighter to my crouch. Mad

If I was you I would try and see if having intercourse still hurts, seemingly as you can insert a tampon I don't see why intercourse could bother you. Though penetration might be an issue?

At least you have your appointments all lined up. I don't have insurance so I had to pay for my visits out of pocket and after 2 gyno's couldn't give me an answer I've given up looking for another one for awhile. This condition is complicated and isn't a "one size fits all" situation. So what could be the answer to someone elses pain could be completely different from your answer for your pain. I wish you luck and just know that your not alone.
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Re: 19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Thu Sep 15, 2011 9:32 pm

ugh ya i hear you! Even with insurance its a pain with all the $25 dollar co pays but i can only imagine the cost without it! Mad As far as sex goes, i feel like it'll be so irritated and sensitive after but when my periods over i'll give it a try Smile and maybe buy some lube? hahah

my appointment is at 9 tomorrow morning so i'll definitely let you know how it goes and see if I can get any more info from my gyno! You've been such a great help! thank you so much <3 Very Happy

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Medication

Post  mmorgan on Fri Sep 16, 2011 4:44 pm

Hope your appointment went well. Smile

Just curious for BV did you take oral medication or the cream?
& did your discomfort start after? If so how long after treatment? Question

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Re: 19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Sat Sep 17, 2011 5:30 pm

My appt went well! Except I almost fainted cause I was so overwhelmed haha! but she did the Q-tip test and nothing really hurt me except when she touchd the red areas it kinda bothered me cause the skins so chapped down there Mad she gave me estrace cream to use and this is the final thing she's doing before i see the specialist. im kind of nervous to use it? I have to use a very tiny amount and put it on the irritated areas for 2 weeks every night. and if things start to look better than i can use it 3 times a week and then i dont know what happens after that lol.

Have you read anything about this cream? i've read some things about it and it seems like its a 50/50 chance of working. My gyno said its probably gunna burn a little but it's just cause i'm putting it on such irritated areas. I'm afraid it'll ,ake everything worse so I haven't used it yet Sad I think I'm going to tonight!

When this all started I hadnt been taking any type of oral medication. When it started I thought it was yeast (like every other girl lol) and used monistat 3-day kit. Didn't work Sad so i got checked for bv, tric, yeast and all that and before I even got my test results in for BV my doctor assumed I had it. I used the Flagyl for a week that my doctor prescribed me(oral). so i used that and nothing got better and then I took the fluconizole too that she prescribed me and i'm pretty sure thats how i got BV from taking those so then my second round of getting tested about 3 weeks later, it came back possitive for bv and at that point i started to get really red and imflammed down there and after I took the flagyl for the second week all that redness went away but i still have the same symptoms that I had from the very beginning No

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Re: 19 years old..vulvodynia? need advice!

Post  mmorgan on Sat Sep 17, 2011 6:36 pm

I'm so different I'm not chapped or have abrasions on my vuvla. It just burns!

Glad your appointment went well and this week I'm planning on making an appointment to a new gyno and I hope this one can shed some light. :/


So you just started burning out of now where? There's nothing you can think that could of trigger this?
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Re: 19 years old..vulvodynia? need advice!

Post  ilovebaxter1 on Sun Sep 18, 2011 5:43 pm

I honestly have NO idea what could have caused this! If it was caused by medications/antibiotics the only ones i took all year were flagyl way back in december or january because I had BV. Also, I did take another antibiotic in the winter for an ingrown hair on my leg? But that was soo long ago i wonder if that could have caused it now? I also changed to a different soap around May..but i switched right back to unscented dove when this all started but i'm not sure if that could cause it either? -_- other than that I've been doing the same stuff all my life and have been on BC for 5 years now..i heard that can cause it. Evil or Very Mad I'm so clueless of what could have caused it

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Re: 19 years old..vulvodynia? need advice!

Post  penfebruary on Wed Dec 14, 2011 6:38 pm

I'm also 19 years old Smile have been dealing with symptoms for about 7 months now (started this May). I'm guessing my trigger was 2 bouts of UTI, maybe complicated with sex, but those are the only things I can think of that triggered it. I had been sexually active for at least a year and a half before it started.
My symptoms are seemingly spontaneous burning and soreness, often painful urination or urination causes irritation and starts the discomfort. I also sometimes feel more urgency to urinate. I can't really tell exactly where the discomfort comes from - it seems to be the general vulval area, not really the clitoris, but from urination and around and just inside the entrance. I've only just been prescribed medication/diagnosed - your doctor sounds much better than mine! She has prescribed me hydrocortisone steroid cream as of yesterday but I tried it last night - I may have used too much but I didn't use loads - and woke up this morning burning like mad (a long bath with bicarb of soda took it away). I'm scared to use the cream again as it was so bad this morning - does anyone have any thoughts on whether or not I should? I am having an appt with a different doctor this evening and I'm going to ask them, though it is difficult as most doctors don't know anything about vulvodynia really!
I'm trying to work out what brought my symptoms back as I've been 98% symptom free for the past 2 months and was really enjoying having my life back, but suddenly with my period last Friday the symptoms came back badly Sad the most I can think of that triggered it is dehyrdration!?
I don't really know how to approach it - nerve, hormone, irritation??
Any thoughts would be great.
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Re: 19 years old..vulvodynia? need advice!

Post  skippypie23 on Wed Dec 14, 2011 9:30 pm

I'm so sorry you have to go through this, but it must be a good sign that your symptoms went away for a few months? Can you think of anything you did differently during that time? Eating habits, soaps, detergents etc?

I am actually thinking of going to a urologist for my kidneys and see if everything is going well there. Maybe you should at least take a urine test and check the pH balance. Especially since peeing often triggers it.

My V started when i was about 19 too, and I had been sexually active before that too. It really doesn't make sense; but I know we can figure out how to get rid of it.

Feel better soon <3

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look for another physician

Post  florence1009 on Thu Dec 15, 2011 6:18 am

Hello! It seems something else than a Provoked Vestibulodynia. Go for another Physician: an hydrocortisone Steroid cream looks like the "one fits all" kind of prescription... The national vulvodynia association has a nice list of specialized physician. Were do you leave?

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Re: 19 years old..vulvodynia? need advice!

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