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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 …

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


My story: Please help and thank you for this site!

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My story: Please help and thank you for this site!

Post  jmcmil on Sat Jul 07, 2012 3:29 am

I am 36, almost 37 yrs old. I reconnected with my high school boyfriend from 20 yrs ago and we had a sexual encounter and he was very rough and I bled afterwards. It had been 3 yrs since I had had sex with anyone and I am tight in the vaginal area. That’s when my nightmare began. This was last Thanksgiving (Nov 2011), 7 mos ago and I haven’t been the same since. I had pain afterwards that never went away. I went to my gyno and was tested for STD’s, all negative and I had a biopsy of skin which revealed lichen schlerosis. I was tried on a variety of steroid creams, even a compound cream and none of them took the pain away. I was prescribed Amitryptaline 50 mg at night. I tried over the counter Candula cream, Cortisone cream, and a variety of others. My pain is a burning sensation all of the time. I then went to a dermatologist, which he gave me a steroid shot and some more creams, none of them relieved my pain. He would hardly even look down there and acted embarrassed. At times I felt like the creams helped, however other times the creams did not relieve the pain and the burning continued. I then went to a gyno who specialized in vulvodynia 3 hrs away to be diagnosed with generalized vulvodynia. I had to fight back tears because I had researched the diagnosis and I did not want to hear it. He increased my Amitryptaline to 75 mg a night. For about a week, the medicine helped and I thought I would be pain free.

Then the pain came back the next week. I am miserable. I am so blessed to be able to work from home, however I sit in a pair of boxers with no underwear and sit on ice packs all day. I feel like someone took a heating iron to my vagina. Also, I feel like something is sticking me down there alot. I do daily vagina checks and can’t understand why I feel pain when it looks normal down there. Then at times, I’m blood red for no reason. The only time my vulvodynia is better is when I am on my period. I don’t understand that. Also, I have pain near my rectum area or the area between my vagina and rectum (perineum area). Today, I have a new boyfriend who is supportive, as well as my parents. I feel so isolated because I can’t talk about this with just anyone so I am so thankful to find this site. I feel like my vulvodynia rules my life. I have decreased my Amitryptaline back to 50 mg at night b/c I was so tired during the day. I can’t tell a difference from the decrease. I have pain regardless. I will give anything for any suggestions to help me be pain free.

I know everyone is different and has to find their own cure. Has anyone tried acupuncture? Does anyone else feel better during their period? Any feedback would be greatly appreciated!! Thank you so much!! I can’t imagine being pain free again!

Jackie


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Pain Relief

Post  evanrude on Sat Jul 07, 2012 4:08 am

Hi Jackie,

I'm so sorry to hear that you're suffering. It is so unfair. I'm lucky compared to some of the women I've read about.
My pain is pretty mild. I haven't sex in three years. The last time I tried it hurt really bad and that's when I found out
that I had vulvodynia. I don't know if it will ever go away, but I'm trying to stay hopeful. I'm too scared to have sex
again because I'm afraid it will hurt and that will just re-confirm that I'm still not better.

Anyway, my pain is usually worse when I'm on my period. Sometimes I don't notice the pain and I think maybe it's
gone for about a month. then it comes back. I don't think it is as bad as when this first started about 3 yrs ago.
I just hope it will go away on it's own one day. Since this first started I've become better at accepting it and
not so depressed about it. I've tried may things but the only thing I really do for it now is:
Take calcium caltrate daily, try to heathy, take a liquid probotic and put Aquaphor ointment on everday after I shower.
For me, it works better than vaseline or anthing else I've tried.
I keep thinking that vulvodynia must be caused by some imbalance in our vaginas.
Hopefully some doctor will figure it out soon so we can all get relief.
I pray for every woman out there who is suffering with this. It's nice to have a place to talk about it with others that can relate.

Please stay posutive. There has to be an answer out there somewhere.

evanrude

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Thanks

Post  jmcmil on Sat Jul 07, 2012 4:26 am

Thank you for your supportive feedback. I will look into some of the things you listed to try. I am desperate to try anything at this point. I try to stay positive and am thankful for my good days. Most posts I have read on this site are related to sex and although I am definitely not interested in having sex when I am burning, I have a constant most all of the time. Sitting on ice seems to numb it, however I dread having to get dressed and go out because I never know if I am going to burn or not Sad I pray that the docs find a cure and that everyone on this site gets healed.

jmcmil

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A Chiropractor has helped me!!!

Post  KathyH on Sun Jul 08, 2012 4:20 pm

Hi Ladies,

My problem started in January this year after I had a hysterectomy. I was in pain from 4 days after the operation and I was examined by so many Doctors and none had an answer as to why I was feeling what I was feeling, they all said the same that they couldnt fine anything wrong. In the end I was in suc h a state that they admitted me and did a second operation as they thought there maybe some scare tissue causing my pain, this done I was still the same. My GP told me that I would have to get used to the new feelings I had down there and that it would become the norm, and that when I felt pain when out walking I should stop and listen to the birds singing and then I would forget about it, what a joke, dont know how you forget about a burning hot neddle sensation digging in your bits!!! I have since changed my Doctor.

I saw my Gynecologist again last month and when I explained all my symptons he said he thought it may be nerve entrapment in my back due to the position I was put in during the operation and that he would send me for an MRI scan and then to see the back Doctor. While waiting for these appointments I took matters into my own hands and went to see a Chiropractor, who said she thought my Gynecologist was probably right about my back. She as very wary as to what treatment she would do but used some special blocks and light manipulation and I am delighted to tell you that I am 80% better!!! so much so that my husand and I even had intercourse for the first time since before my first operation, and the lubrication we used didnt sting, I couldnt believe it
as every cream, lotion and gel I had used to try and sooth my pain only made it worse. I know every ones situation is different but I would say that going to see a Chiropractor may be an option you could try, who knows, it might just do the trick and its certainly worth a try.

I wish you all good luck and hope and pray that you all find an answer to your problem very soon. God willing the medical profession may come up with an answer before long so no other woman has to suffer this terrible complaint in the future.

KathyH

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Re: My story: Please help and thank you for this site!

Post  jmcmil on Mon Jul 09, 2012 2:43 am

Hey Kathy,

That's great that a chiropractor helped you!! I used to see one years ago and maybe I should go see one again. The problem is that I live in a rural town and our chiropractors wouldn't know what vulvodynia is, however I could go and not mention vulvodynia to see if it helped. Anything is worth a try..thanks for the info and your supportive reply. I wish you the best of continued success! I pray too that the docs find a cure because there are so many women affected..

Take Care,
Jackie

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Re: My story: Please help and thank you for this site!

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