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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


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.

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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!

Aussie

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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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