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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 …

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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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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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Your experience..

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Your experience..

Post  Neevi on Tue Nov 05, 2013 4:44 pm

What triggered your vulvidynia off? Or did it just gradually start from nowhere?

What are your exact symptoms??

Im trying to compare as i havnt been diagnosed yet but im pretty convinced i have it :-(

Would love to hear anyone elses experiences..

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Re: Your experience..

Post  Alana3 on Tue Nov 05, 2013 4:49 pm

I wouldn't compare everyone is different, see what your doctors has to say and don't diagnose yourself. Because if you convince yourself that you have it you might convince the doctors and they'll concentrate on that rather than a different problem if that does occur.

Mine came out of nowhere sex was excruciating painful and felt like someone poured acid on an open wound. It was horrible. I didn't have any other symptoms at any other time. I had surgery about a year ago and the pain went away and have a somewhat norma sex life now.

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Re: Your experience..

Post  Kathy100 on Wed Nov 06, 2013 11:57 am

Mine started mildy with sex for no particular reason - it didn't happen every time - followed by burning after sex & then what felt like a UTI 24 hours later. This happened on and off for a couple of years - I saw several DRs & a gynae who all said there was nothing wrong. Another clue was a very painful smear test but again they said nothing wrong. Then last year out of the blue the unprovoked started with burning & spikey pain all the time. Then a couple of months after that I started get lower back & tailbone pain. Sitting down, wearing jeans etc make it worse. I now take notriptyline tablets and am having physio both of which are helping.

If you think you may have it - I'd go to the Drs & get a proper diagnosis because what starts as mild can get a lot worse as it did with me. You may have try several different ones & several different treatments before you find one that suits you.



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Re: Your experience..

Post  Neevi on Wed Nov 06, 2013 12:38 pm

I went to my doc yesterday who dismissed me and tolld me to go to a gynae as they never heard of vulvodynia and couldnt see anytin wrong with me. So i have an appointment to see a gynaecologist next Thurs.
Im hoping and praying its something else curable but reading a lot of the posts on here it does sound like i have it. So down and upset over this. Being a woman can really suck sometimes!!! :-(

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Re: Your experience..

Post  Sarah001 on Thu Nov 07, 2013 10:04 pm

Mine started with sharp pain on penetration only for a couple of years which I ignored then I got intense inflammation and soreness in the vestibule only for 6 months which prompted me to seek help and while I was waiting for the appointment with the specialist (6 months) it became diffuse constant pain which is where it still is. I know mine is caused by pelvic instability and spasmed muscles which I'm working on. I couldn't get to see my GP so went to a GU clinic instead and found a brilliant consultant who understood the condition and sent me to a dermatologist to rule out skin conditions and suggested I find a women's health physio which I have. My exact symptoms are long winded but generalised burning and prickling constantly on the outer areas and rawness constantly in the vestibule which gets 100 times worse if I wear any tight clothes or clench my pelvic floor. I feel my best when I first get out of bed and worsen as the day goes on. The best book to read if you do have it is When Sex Hurts because it guides you through all the known causes and how to treat them.
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Started with UTI symptoms

Post  The_Joker on Tue Nov 12, 2013 10:52 am

Mine began back in June 2013 completely out of the blue. Went to the doctors with symptoms of a UTI was given trimitheprin (?) but a couple of days later the burning got really bad and I was told I had urethritis and given amoxicillan..no improvement at all.  Walk in GUM clinic was the next stop, swabbed for herpes on four seperate occasions...all negative, then they decided to check for thrush (never had this before) and LOTS of thrush was discovered...treated for this but still the burning didn't really go and I couldn't sit down at all. Sad The only thing that gave me relief was ice packs applied to the area. Eventually, after some return trips to the GUM clinic Vulvadynia/vulvar vestibulitis was suggested and nortryptiline was prescribed. Unfortunately, I had a very bad reaction to this drug after taking it at a very low dose for a few days. At this moment in tim,e a TENS machine is giving me some minor relief and I've an appointment scheduled with a private vulval dermotologist for the end of November...Really need to find a way forward and get back on track with what up to now, was a completely normal , average life with an ordinary functioning vagina/vulva!!

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Re: Your experience..

Post  mary jane on Tue Nov 12, 2013 11:39 pm

hi there,

I was diagnosed at a GUM clinic as well.
I recommend you see Wendy Reid privately if you can afford it, she is the BEST in the country and she cures a lot of women.
I've just been referred today at St Barth's hosp in london, they have a vulval clinic and St Mary does too !
be hopeful, you got diagnosed pretty fast and there are a lot of treatments. i'm on 30 mg Amitryptiline and feeling so much better I can walk again and wear knickers ! 2 weeks ago I was practically dead from pain and fatigue! I have severe nerve pain, stabbing and electric shocks, no burning.
The burning pain might be dermatological, you could try taking some Optibac probiotics, there was one lady who was cured by it.
Here is the link: http://madpeach.blogspot.co.uk/2011/10/hannahs-story-success-with-yeast.html
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Re: Your experience..

Post  mary jane on Tue Nov 12, 2013 11:43 pm

I'm sorry she says she was cured by the bacteria in the probiotic, Optibac in one UK probiotic with the same type of yeast that she used to get cured. Saccharomyces cerevisiae (boulardii)
I am taking it myself right now and will report if it helps. I have had yeast infections ALL MY LIFE
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Re: Your experience..

Post  mary jane on Tue Nov 12, 2013 11:46 pm

I'm sorry, this was all a reply to The_Joker, did not realise I was posting random replies for a completely different question.

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Thanks Mary Jane!

Post  The_Joker on Wed Nov 13, 2013 3:56 pm

Hi

Have just read your reply...many thanks for the positive and helpful comments!Smile  How easy is it to make an appointment to see Wendy Reid? I'm glad to hear that the Amytripline is making a difference for you. Hopefully the Optibac probiotics will too. I'll be very interested to hear if they do.

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Re: Your experience..

Post  mary jane on Wed Nov 13, 2013 4:29 pm

@ the joker Wendy costs 250 to be seen in the harley street clinic privately or through NHS at royal free hospital, but that will take a long long time. but she is the best in the country, so ....I couldn't afford her personally, I just chose someone via BMI healthcare, even though not the best choice, but he still helped me.
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Re: Your experience..

Post  Leslieg on Wed Nov 13, 2013 6:25 pm

Maryjane, reading your post triggered a memory for me. My issues started 5 yrs ago.  After giving birth i had symptoms then diagnosed w/ bv ( not even sure I had this) but then had UTI and was treated w/ lots if antibiotics and subsequently got a bowel infection from antibiotics. The treatment for this was taking stronger antibiotic (ironic) and also a product called florastor.  This was to build up the good bacteria (flora) in my bowel.  If I remember correctly florastor is boulardii (a type of yeast i belive but not candida).  Now getting to my point......I did not have V symptoms during that treatment.  They came back after that treatment following a yeast infection.  I never made any connection before.  Maybe I'll try taking florastor again ...  Smile
Interesting...

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Re: Your experience..

Post  mary jane on Wed Nov 13, 2013 9:15 pm

@ Leslieg You can try again. I have a lot of reasons for my vulvodynia, but yeast is surely NOT helping my situation with inflammation and nerve pain, so I'm trying to get rid of it. Diflucan helps, but only for 24 hours Sad
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Re: Your experience..

Post  Alana3 on Wed Nov 13, 2013 9:46 pm

Try eliminating something from your diet. For me a birth control change and getting rid of probiotics helped

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Re: Your experience..

Post  mary jane on Wed Nov 13, 2013 10:21 pm

@ alana I'm trying to cut out sugar, but it's hard. I've had yeast infections on and off for 12 years Sad
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Re: Your experience..

Post  mary jane on Wed Nov 13, 2013 10:24 pm

@ alana acidophilus was bad for me, it made me very constipated and did nothing for yeast. however, this new one is very well tolerated by my system.
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Re: Your experience..

Post  tinkerbelle2 on Fri Nov 22, 2013 2:37 pm

Hi Neevi, I am still unsure as to whether mine started out the blue or came on randomly. I was a 17 year old virgin in college with no health problems, and like The Joker said, a normal happy painless vagina. I went on the Pill for two reasons - to see if it would help my acne and to see if it reduced my painful periods. Everything seemed okay for a few weeks. I randomly developed a urine infection, it would really itch and burn during and after a wee and my bladder never felt relief. The antibiotics cleared it all up. A few weeks later this dull sort of burning started but I just got on with life . One guy I went on a date with touched me quite roughly down below (the word 'fingered' makes me cringe lol) and that was the first time that had happened and it made me extra sore. The burning kind of faded away but was still kind of in the background. I met a guy in Jan 2010 who I really really liked and we were seeing each other for about 3 months. I ended up losing my v to him. It was painful and bled a fair bit but I guess that's often the case. Unfortunately that little fling ended suddenly, he went back to his ex and I was left devastated! It took me about a year to get over it. Then the burning got really bad. I kept getting std tests as I'd had unprotected sex but everything was clear. I had cystitis and thrush a couple times, what's weird is when I treated them all burning stopped! Then returned after a few days :S but the infections had gone. I met my current boy in oct 2011 and he's amazing! I was off the pill by this point. I tried 2 diff types of pill and the birth control injection which stopped my periods. This made little difference. I also had a cervical cancer vaccine? We're sometimes able to have sex and sometimes not. The burning got really bad in 2012 and is now often quite bad
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