Log in

I forgot my password

Latest topics
» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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: 4

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, …

Comments: 9

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 …

Comments: 5

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 …

Comments: 0

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 …

Comments: 4

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


Please someone ., anyone with this help me:(

View previous topic View next topic Go down

Please someone ., anyone with this help me:(

Post  Claire1031 on Wed Feb 06, 2013 5:10 am

Hello .. My name is Claire and I have been diagnosed with vulvodynia about 2 months ago. I was devastated because I already did my research on it. I'm going to order neogyn tonight and have been doing pelvic floor muscle pt ..( which is very hard for me and uncomfortable) they prescribed me norontin and I've been on it before and had to go to the hospital because my withdrawals were so bad so I don't want that.. Does anyone think I should try this neogyn and see if it works .. I'm trying to have faith but I feel as though no one in my life understands the stress and anxiety of this condition.. Thank you to those who will take the time to give me advice I appreciate more then you know!!

Claire1031

Posts : 4
Join date : 2013-02-06

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  mcclave96 on Wed Feb 06, 2013 2:02 pm

You are one of the 1st people I have ever read that has withdrawls from neurontin.....i too suffered unbelievably!!! I just dropped down to 1800 a day(from 3600) and i am noticing after about 2 months it is starting to help a little. I have read that the cream you are referring too does not have great results....i'm not sure what your symptoms are, but from what i am learning the pain we have on our vulva is from nerves...which is where the PT starts to help. I would be careful of creams....once I stopped everything, but Crisco I have noticed a little improvement...I think all of the creams aggravate the vulva that was never really the problem(in some cases). I am also finding a little improvement when I had magnesium supplement to my vitamin regiment....it helps with inflammation...which is what my doctor believes is the ulitmate problem with me...I know most of what i wrote you won't really help but i know how desperate you feel!! I am so sad for all of us suffering alone!!

mcclave96

Posts : 3
Join date : 2012-12-21

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  jen007 on Wed Feb 06, 2013 4:50 pm

Hotmess,

I'm not a fan of commercial creams that advertise they help stop vulvar pain or cure vulvodynia. Usually these types of cream are just scams with false promises. Did you're doctor recommend this cream to you? I wouldn't put anything down there before consulting a doctor.

What kind of pain do you have? Provoked or unprovoked? Is your pain interior or exterior?

I'm asking these questions because, depending on the above, different treatments cater to different types of vulvodynia. In my case I had provoked pain where I only experienced pain when I was touched, also my pain was around the interior entrance area, around the rim, of my vagina.

-Jen

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 2:05 am

Thank you so much for replying first of all!! And yes I refuse to go back on neurontin I just think its a bad drug.. But as for the cream I'm kind of desperate and will do anything I have to to make the pain go away I have provoked localized vulvodynia and its definetly interior .. I feel like the pt isn't going to do anything until the pain in my vulva gets better .. This seriously is such a frustrating condition and I pretty much cry everyday and think about it 24 7 which is making it worse because of all the stress .. Anything I eat I'm like oh is this affecting it or how I sit or how I stand .. I have never felt so alone. I keep trying not to have self pity because I'm not like that and don't like to think this negatively .. Thinking positive is the way to go but it's literally impossible right now .. But about the cream I was thinking about the affects it would do to the inside of me. Does anyone else feel this alone and ashamed about this? I wish there were groups we could go to so we feel not so alone:(. I'm going to call my doctor tomorrow and ask about the cream. I already know she's going to say no but I will make the desicion.. Again thank you ladies for answering me you've made me feel not so alone for a couple minutes:)

Claire1031

Posts : 4
Join date : 2013-02-06

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  jen007 on Thu Feb 07, 2013 3:51 am

I had experienced the same pain you're feeling now. I'm going to be honest with you, the cream most likely won't work, in my opinion. The only cream/ gel that ever gave me relief was 5% lidocaine cream. It temporarily numbs the area you apply it to. I would highly recommend having your doctor prescribe it to you. It really takes the edge off when you're experiencing a lot of pain.

My doctor also had suggested for me to try pt, but told me in the end it wouldn't solve my problem. My pain was so bad I couldn't even stand to bare the cotton swab test. After 5 years of suffering and 3 years of treatments that didn't work I decided to have surgery to remove the affected areas which caused me pain. I only did it as a last resort. There was nothing else I could do so I figure what the hell...what else could I do? It was the best thing I ever did. I'm no longer in any pain. It doesn't always work out that way for everyone, but my doctor assured me that with the type of vulvodynia (the same as yours) the surgery would be a success. I would take to your doctor about it, but only as a last resort kind of thing. Try everything you can until you've tried it all before considering a vestibulectomy.

But definitely do give the lidocaine a try. I've even heard of some women using coconut oil or crisco down there to sooth the area.

Don't feel alone! You've got a great group of ladies here who do really care about all of the members here. There's always someone to talk to! Stay strong!

-Jen

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  Claire1031 on Thu Feb 07, 2013 4:15 am

Thank you jen I really appreciate it! I do have the 5% lidocaine and sadly that doesn't work for me at all .. I put it on before sex but it is still absolutely excruciating. I want to do the surgery but I know they will not do it until I've tried everything .. I need to just chill out about the whole thing .. I'm just getting mixed info so it's aggravating. I need to stop stressing its just so hard .. My boyfriend just told me it makes him want to cry because of how I can't stop thinking about this and can't stop looking up research .. He knows how much it's killing me. Everything's going to be ok I just have to keep telling myself that .. Thank you for making me feel better though .. I'm going to ask about the surgery next time I go to the doctors and shell prob laugh at me but its worth a try! Thanks again !!

Claire1031

Posts : 4
Join date : 2013-02-06

View user profile

Back to top Go down

Re: Please someone ., anyone with this help me:(

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum