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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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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 …

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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 …

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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 …

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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 …

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I am cured - Lyrica helped!!!

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I am cured - Lyrica helped!!!

Post  Donna84 on Thu Oct 03, 2013 9:24 pm

LYRICA HELPED!
I would like to share my story and try to help some women who also have this terrible disease. My vulvodynia started after I contracted Chlamydia from my first boyfriend, at the age of 20. I was treated for a different types of diseases, fungi, bacterial vaginosis…but there was no treatment which could help me on a long term basis. And I had a constant itching and burning. It lasted for years, with small periods of relief. But my sex life almost diminished. I did not have a firm relationship since then and did not enjoy sex, although I had it from time to time, thinking that maybe my problem is psychological and that it will go away by ignoring it. But it never did. And I forgot I am women.
At the peak of my depression, due to some other negative things which happened to me recently, I was hit by a car and was completely equivocal about will I live or die. Can you imagine that! So I decided to go to a psychiatrist. Previously I also tried this, and different tryciclic antidepressants and Tegretol, but it never gave any results concerning my vulvodynia or depression. I was sleepy, tired and still sore and itchy. This time, I did a research of my own. I talked with psychiatrist for an hour and she gave me escitalopram for depression and Lyrica (pregabalin) for vulvodynia. I started only with escitalopram. And depression went away…life gained meaning again and world was full of colors. I regained belief in people and world and hope that things will get better. But vulvodynia remained. Then I tried LYRICA. With the first pill of 75mg…it almost went away completely!!! I was so happy!!! Now I am 3 weeks on the minimum dose, no side effects and without pain!!! So try it out, nothing to lose and much to gain. I feel like a women again and look forward to sex!! Smile Keep trying and don’t lose faith! Try nerve pain medications – you have nothing to lose. I also had chronic pelvic pain which vanished with Lyrica as well!!!! I am so happy now. 

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Re: I am cured - Lyrica helped!!!

Post  tinkerbelle2 on Sat Oct 05, 2013 11:59 am

Glad to hear it! What is Lyrica and how do you get hold of it?

Belle
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Re: I am cured - Lyrica helped!!!

Post  Sarah001 on Sat Oct 05, 2013 12:55 pm

I take Lyrica however I'm on 450mg a day which only helps the widespread burning and not the soreness and rawness. In the UK it's also referred to as Pregabalin and it is precsribed by any doctor however it is expensive and usually here they try you on Gabapentin first as it's much cheaper. Both are anti-convulsants and used for pain of the nerve variety.
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Re: I am cured - Lyrica helped!!!

Post  Donna84 on Sat Oct 05, 2013 4:54 pm

Sarah001 explained it very well. My doctor gave me a prescription which enabled me to get the med for free, otherwise, it is expensive in my country (East Europe) as well. Yes, it helps mostly with general burning, however, for me it was a small miracle. My never properly diagnosed pelvic pain - stopped, as well as the vulvar burning. I am very satisfied for now. But it doesn't help if I get bacterial vaginosis or a yeast infection of course, however with Lyrica, after use of proper vaginaletes, I feel healthy. Before Lyrica I used tons of medicines and nothing helped, I always had burning...

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Re: I am cured - Lyrica helped!!!

Post  Jacky51 on Tue Dec 10, 2013 11:40 pm

Hi Lyrica worked for me as we'll. 3 months of hell before I saw a pain consultant but within 48 hours the pain had completely gone. I no longer take it and thankfully the pain hasn't returned. Made me put on weight which I am finding hard to lose, but it gave me my life back x x

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Re: I am cured - Lyrica helped!!!

Post  Jo44 on Mon Feb 16, 2015 9:02 am

I know this is an old post but I hope someone will answer my question, I started pregabalin last weds, so been on it for 5 nights. The burning I had experienced had gone several weeks ago but I am left with the redness & it's very sore below. I did have two/three days last week with no pain at all. I'm also using Dermovate cream twice a day but not sure if it's doing anything! I'm also on Amitriptilyne 50mgs which my Gyni wants me to slowly wean off.
What have you ladies found helps the soreness? Did you have it aswell as the burning?

I have bicarbonate of soda baths, wear cotton pants, never use perfumed things below & use sensitive washing powder.

I'd really appreciate some help! I see Sarah mentions Pregabalin helping the burning but not the soreness too. How are you now please?

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taking Lyrica; can't stand the side effects!

Post  OBRN2007sms on Mon Feb 16, 2015 10:41 pm

I too just started Lyrica 75mg and I am only taking it once a day at night because I can't stand the side effects! I am so tired, dizzy and nauseated. It has helped with my symptoms though and I am able to have sex again. Has anyone else had these side effects and have them eventually go away? I am a RN and cannot work with this foggy brain; luckily I only work one day a week but my week is up and I still feel bad! I am contemplating calling off tomorrow or skipping my dosage which I know I shouldn't do.

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Was on lyrica 300mg, just got off it

Post  sgw11 on Wed Feb 18, 2015 4:34 am

I was also on pregabalin (Lyrica) for about 4 months, taking two 150mg tablets per day. I didn't really experience the more common side effects such as fatigue and so on. Unfortunately it didn't change anything for the pain for me and I am now off it, however everyone responds differently so fingers crossed for you! I have been on amitriptyline cream now since my diagnosis of localized provoked vulvodynia (about a year ago), which initially made it go away completely, but after stopping the cream it came back again which is so frustrating. However I am able to have sex with mainly initial pain and minimal soreness after, which is why I am still taking the amitriptyline. Even if the lyrica isn't right for you, there are plenty of more treatment options available so hang in there!

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300-450 mg of Lyrica

Post  sadone on Thu Feb 19, 2015 7:57 pm

I take lyrica too. It keeps me out of pain in everyday activities, but I don't think sex.

I take it for anxiety now. It makes me high and more brave about taking risks like meeting someone new.

I wish it would work for sex.

Then my ex would come back?

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taking Lyrica; can't stand the side effects!

Post  OBRN2007sms on Fri Feb 20, 2015 5:53 pm

Some of the side of effects have gotten better, I am still nauseated on and off but my generalized symptoms are returning so I know I need to up my dosage which I am afraid will make the side effects worse! I think I will ask my doctor about this Amitriptyline cream I have an appointment on Tuesday. I wish this nightmare would just end all together! No

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Re: I am cured - Lyrica helped!!!

Post  Jo44 on Mon Feb 23, 2015 2:11 pm

Hi Sadone,

You say the Lyrica helps keep you out of pain in day to day activities. Can you please tell me did you just have burning pain or did you have soreness & redness too? Im on Lyrica too & don't have burning (which stopped before starting Lyrica) but have soreness & redness. I was diagnosed with Vulva Vestibulitis just over two weeks ago. The other thing is I seem to get better spells just before my period starts & will have about a week/ten days of feeling fine but then after my period stops & I start my pills again it seems to start to get sore again!! Has anyone else experienced this?

Thanks Jo x

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lyrica helps me as well but I hate the side effects

Post  BpCookie on Tue Feb 24, 2015 3:55 pm

I take Lyrica twice a day. I take 150 mgs twice a day if the burning pain is bad but the side effects are horrible. My concentration is a mess, I can't think, I lose track of time as its ticking away. I also get horrible dry mouth. When my pain isn't as bad I take 100 mgs. Between my surgeries, procedures and Lyrica things are about 50% to 75% better. But all of a sudden its back with a vengeance. I am going crazy with burning and itching. My problem started over 3 yrs ago with horrible burning pain. Now I have burning pain, itching, redness and swelling. I don't know whats going on right now. Need to see my Gyno again to see what other magic tricks he may have.

hugs to all
Cookie

P.S. When I see my Gyno they always ask if a med. student may be in the room. I always tell them that they can bring in the entire class room because every Dr. in Az. has seen my vagina. My vagina gets more attention from Dr.s then my poor husband does.
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Re: I am cured - Lyrica helped!!!

Post  Zbrown on Wed Feb 25, 2015 11:05 pm

Does medication ever take away the rawness entrance of vagina :/ its not as bad only odd time or start of intercourse or afterwards sometimes areas feel sore as bruised or raw but there not general.burning at a bare.minimum now zz

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Zbrown

Post  BpCookie on Thu Feb 26, 2015 3:39 pm

There is one thing that I use before I have sex, its called Lidocaine Ointment USP 5%. You can only get it by prescription. You rub it on the entire area, but not inside, about 15 mins. before you have sex. It will numb the area. Make sure you get the ointment and not the gel. The gel is useless.

Good luck. hugs
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Re: I am cured - Lyrica helped!!!

Post  Mariek on Tue Mar 10, 2015 3:50 pm

I too use a lidocaine 2.5 and a prilocaine 2.5 cream,
20 minutes before sex. It did work. They are mixed together in the same tube.

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Re: I am cured - Lyrica helped!!!

Post  drivenbyambition on Sat Mar 14, 2015 4:54 am

I am glad you have found relief. I have been prescribed a similar, but not the same, medicine. I just can't bring myself to take it because there is no long-term studies and can effect fertility. I also wonder how a pill can deal with my extreme redness and irritation. I just don't see that happening.

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Re: I am cured - Lyrica helped!!!

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