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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 …

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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 …

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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


Advice for my mother

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Advice for my mother

Post  BerylH on Tue Oct 02, 2012 6:06 pm

Hi everyone, I am hoping for some advice from all you amazing ladies, whose stories I have read and my heart honestly goes out to you all and I wish you all success in all the avenues and treatments you are trying.
My mother who is 70 was diagnosed with Vulvadynia last October 2011 after a bout of pneumona, it appears some of the medication she was given for this can cause Vulvadynia and I guess her immune system was pretty low. Since then she has done everything, from medications (she is currently on Gabapentin) and we have also ensured she is on a low oxylate diet and taking calcium citrate and magnesium tablets, plus she had the operation where they remove some of the skin (apologies I have forgotten the technical term), which just seemed to move the problem around the area and gave her no relief.
She then had the nerve block treatment but this offered her no relief either, in fact she was in considerably more pain following that.
She has since been to homeopath's and is now on her 4th session of acupuncture and is attending a pain clinic next week.
What I am most worried about is how alone in all this she feels, nobody she knows has ever heard of it (as we had not before she was diagnosed) and today when I spoke to her I fear that she feels we are all just thinking she should just put up with it and stop complaining, which couldn't be further from the truth. She is questioning if maybe she has a low pain threshold (which I know is not true, she has had considerable dentistry done in her lifetime without making a murmur and I just know that her pain threshold is high) but she has nothing to guage it against.
A few months ago I do know she was getting the odd day of relief but in the last few months it seems to be never ending for her. If anyone would be happy to let me know what they consider their scale of pain to be when it flares up (on a scale of 1-10) then maybe I can copy your posts to her (she is 70 and scared of the internet Smile ), and she won't feel so alone. Reading some of your posts it seems she should stick with the acupuncture as I can see a number of you have had great relief from this. I had also heard a TENS machine can help, has anyone any advice on that?
Thank you so much in advance for reading this and I look forward to hearing back from you.
Wishing you all pain free futures where this condition is a thing of the past.
x

BerylH

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Re: Advice for my mother

Post  maudie on Tue Oct 02, 2012 8:49 pm

Oh boy, I'm so sorry for your poor mother. I'm surprised she doesn't know anyone who has had this trouble. I bring it up all the time now, and am surprised at the number of women who are startled and yell "me too! I thought I was just...(stupid, crazy, had done something wrong to myself, had a weird pain thing no one else had, this was part of starting menopause). I wonder if some women are ashamed to admit/talk about it to your mother.

There are days, less now, when the pain and complete discomfort are in the pain scale of 8 - 10. When I lie down and weep. Or I'm out somewhere and forgot my analgesic ointment/gel, and then have to ride in a car! Your mother is not a bit alone. I get most of my relief from the painkilling ointment. And not sitting much!

You've certainly done a lot of medical procedures I don't understand (I was diagnosed 5 months ago, so I'm still new, and will be off to look up oxylates and the other things you mentioned!). But from experience of other things, please be wary of the pain clinic. They are treating the pain, not the problem. That's not always bad, but many will push off-label uses of drugs, like anti-depressants and medications meant for neuropathic pain or diabetic nerve pain. Some places push the spinal block surgery. (one place wanted me to use a cream on my injured left shoulder, but it was not approved by the fda for use above the knee-- because of possible cardiac complications!) Just be informed and question. Sounds like you do well.

Best of luck to you, I'm so sorry for your mom, but she has wonderful kids!

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Re: Advice for my mother

Post  LillyK on Wed Oct 03, 2012 5:07 am

Please tell your mother to stick with the acupuncture! It works wonders for me and believe me, I was in pain in the worst way. I would say some day it would be a 9 or 10 out of 10. I could do nothing but lay down and cry. Horrible! No one should have to go through it. The diet that has really helped me is no red meat, no dairy except plain yogurt, and no sugar. Makes me feel really good, especially combined with the acupuncture. The longer I am on the diet, the more I have been able to occasionally add a food that is not on the diet back in. Please tell her she is not alone! And that there IS hope. Keep trying. Try to stay positive. I am wishing the best for her!

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Re: Advice for my mother

Post  BerylH on Wed Oct 03, 2012 11:36 am

Thank you so much Maudie and Lillie for your replies. I will definitely ensure she pushes on with the acupunture and also taking red meat, sugar and dairy out of her diet. I know your replies will inspire and give her hope so really thank you very much and I wish you both continued success with your treatments. x

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Re: Advice for my mother

Post  Aussie on Fri Oct 05, 2012 1:51 am

I have also found relief from acupuncture. Before this I was using herbs after countless "traditional"therapies failed. Go back through the celebrating positive threads I think and I have posted somewhere there about them. They helped but were too expensive to continue with. They got me to the point I could have sex, then I started hte acupuncture to help with conception and found it helped the vulvodynia!

mostly in remission during preganncy, although recently sex has become painful again. I don't have daily pain anymore.
Your mum sure has tried a lot of treatments. Nerve blocks scare the hell out of me. Be aware of pain clinics they should be a last resort.

Coconut oil is good to stop that awful raw feeling some of us get.

Has she tired any of the hormone creams? I know in some older ladies on my Interstitial Cystitis forum this helps a lot. Estrogen cream. Would have to be compounded though, get all the nasty preservatives out of it. You can google a compounding pharmacy in your area.

Hope this helps!

Aussie

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Re: Advice for my mother

Post  BerylH on Mon Oct 08, 2012 11:53 am

Thanks so much Aussie for your post, the acupuncture does seem to be something worth continuing.

I will check in with her on the hormone creams, she does have a cream but I think it is a numbing one not a hormone one so i will investigate that further, and the coconut oil.

Thanks again and I wish you continued success with your treatments.

BerylH

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Re: Advice for my mother

Post  Aussie on Mon Oct 08, 2012 10:38 pm

Check out the I C Network forum. There is a section for vulvodynia. Also a section for hormone replacement. The ladies on there are lovely and will most likely be able to help. I really think for an older lady developing this lack of estrogen is likely to play a part. I have a friend who uses the estrogen cream she is 34 so no problem with hormones but it seems to help the skin. The same way the extra estrogen from my pregnancy seems to have helped a great deal! Please come back and let us know how you go with it if she decides to try it!

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 8:28 pm

So sorry to hear your mom is going through this. Its been 8 years for me and I wouldn't want my 70 year old mom to deal with this. I don't have insurance, but I'm going to check out acupuncture. I'm on Gabapentin, Effexor, and Lidocaine Ointment 5%. Along with the V, I have IBS and have recurring Bacterial Vaginosis. Hoping your mom gets better.

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Re: Advice for my mother

Post  Alana3 on Wed Dec 04, 2013 8:31 pm

Isnt bv fun? jk! I have a freaking infected cervix, it goes along the lines of BV. There are tablets over the counter called AZO, they help prevent (supposedly) BV breakouts. They aren't expensive and you can buy them at Walgreens, assuming you live over here in the states. You should look into them- I use them for my frequent yeast infections. I don't even remember what my vagina is supposed to feel like- and my vulovdynia is cured! UGH!

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 10:37 pm

UGH! Is right. I just bought VHessentials for BV treatment from kmart. I will let yo know how it works. 6 day treatment starting tonight.

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 10:38 pm

UGH! Is right. I just bought VHessentials for BV treatment from kmart. I will let yo know how it works. 6 day treatment starting tonight.

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 10:38 pm

UGH! Is right. I just bought VHessentials for BV treatment from kmart. I will let yo know how it works. 6 day treatment starting tonight.

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Re: Advice for my mother

Post  Alana3 on Wed Dec 04, 2013 10:42 pm

Yeah this is something you take everyday for maintenance. But lmk how it works! Where are you from?

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 10:43 pm

Georgia. How about you?

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Re: Advice for my mother

Post  lonelyone48 on Wed Dec 04, 2013 10:50 pm

Alana3 when you say cured, what do you mean? I was told there is no cure.

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Re: Advice for my mother

Post  Alana3 on Wed Dec 04, 2013 11:23 pm

Florida! I got the surgery and it cant come back according to my doc... of course now I'm getting infections like crazy but hey that is curable and I do a ton of organic vegan and gluten free stuff now too... I cant use tampons but if you read the makings of tampons/pads its scary so im switching to organic pads. Where at in Georgia?

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Re: Advice for my mother

Post  lonelyone48 on Thu Dec 05, 2013 12:44 am

Ok I'm south of Atlanta. I guess the closest dr for me would be Augusta. I'm going to a new dr next month and see if she can recommend someone. No one has ever suggested surgery to me not even my old specialist in Michigan. I can actually see and feel scarred tissue on the vestibule. I just the BV vaginal insert and it is an actual pill. Hmmm.... We'll see how this goes.

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Re: Advice for my mother

Post  Alana3 on Thu Dec 05, 2013 12:53 am

Be careful with that one it burns my doc is awesome if you wanna come to florida tho its a haul

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Re: Advice for my mother

Post  Alana3 on Thu Dec 05, 2013 1:03 am

Be careful with that one it burns my doc is awesome if you wanna come to florida tho its a haul

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Re: Advice for my mother

Post  lonelyone48 on Thu Dec 05, 2013 1:09 am

Ok thanks for all the info. I will definitely keep you updated.

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Re: Advice for my mother

Post  Alana3 on Thu Dec 05, 2013 1:41 am

Yeah just be careful.with that drug it burns like hell

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Re: Advice for my mother

Post  lonelyone48 on Thu Dec 05, 2013 6:45 am

Ok thanks

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Re: Advice for my mother

Post  meelie on Fri Dec 06, 2013 1:30 am

Lonelyone48, where are you in Georgia. I am in Barnesville, between Atlanta and Macon. South of Griffin. I have a very understanding GYN in Griffin who gave me a referral to a PT for my V. Between us, and we did try different medicines, we decided that my V is most likely a result of trauma I had almost three years ago resulting in fractured pelvis, L5 and several ribs. My Chiropractor was helping but the adjustments would not last. I have been going to this great PT since September and she has been helping. My V is a result of pelvic dysfunction due to overly tight muscles. Let me know where you are. Sounds like we might be close and if 48 is a birth year:) we are close in age.Smile 

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Re: Advice for my mother

Post  Alana3 on Fri Dec 06, 2013 1:57 am

Ahh good connections!

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Re: Advice for my mother

Post  lonelyone48 on Fri Dec 06, 2013 4:37 pm

Meelie I am in Palmetto and I do know where Griffin is. I am 48 years old.

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Re: Advice for my mother

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