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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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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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Anyone tried BOTOX

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Anyone tried BOTOX

Post  mieko25 on Tue May 18, 2010 2:21 pm

Has any one tried Botox? I have tired just about everything under the sun for vulvodynia. I am now tring to get the insurance to approve botox. I have vulvodynia, vestibilius + pelvic floor dysfuntion. Here are some things that I tried I listed if they helped or not?


Vulodynia started in September of 2008. I was 1 month pregnant with my second child. I was on clomid to conceive my second child two week before the vaginal burning started. First was treated for a classic yeast infection with difflican for 2 weeks 100 mg a day. Then tried difflican 200 mg a day for week. Then I did 3 rounds of antibiotics, plus over 10 vagainal cultures.

In January of 2009 I was sent to dermatologist who tried steroid creams and biopsy of the vulva which came back inflammation of skin:
Cream I have tried:

Desonide 0.05%- work for about three months
Clobetasol 0.05%- made it worst
Lidocaine onitmant 5%0 made it burn more
Clotrimazole and Betamethasone- made it burn more
Lidocaine Jelly 2%- did help numb it for few month them quit working
Triple Anit-Inch cream COMPOUND of Traimo 1% lidocaine5%benadyl 1% seems to help the most I use this most before sex.
C-GABA6%AMIT2%Tramo.25%- was too strong make me burn more
Capsaicin 0.005%- Seems to help for a few hours
Valium suppository’s 5mg with muscle relaxer- did not help also made me drowsy
Earths Mamma Bottom Balm- seems to help the most it gives it a cooling sensations
Desatin Diaper rash cream- seemed to help when burning was intense
A & D Diaper rash cream- seemed to help at times
Estroil- COMPOUNDED cream- seemed to make it worse
Ice- helps
Low oxliate diet- didn’t help
Calicum- helps a little with burning with urination

Oral meds-
Neurotin- didn’t help
Elavil- didn’t help

Physical Therapy-
7 months 30 visits with Karen Newton- helped some tried diolators but they seem to make it worse.
2 month 8 visits with another physical therapist I forget her name

mieko25

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Thu May 20, 2010 8:51 pm

Thanks mieko for all the info and welcome to the forum, its really helpful for people to compare notes on treatment.

I will take a look at that Triple Anit-Inch cream COMPOUND, I have not found creams that have made a significant difference yet.

I have not tried botox, I didnt know that was a treatment?

What exactly does it do to help?

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Tue May 25, 2010 12:25 pm

Hi Mieko,

I've been working with my physio for 3 months now and am just wondering what exercises you did with the dialators? Having preciously been to a physio before this, and I've found my current one is taking a different approach which I feel seems to work well for me & my body and might help you too.

No, I haven't used botox. I'm hoping I don't have to venture there or surgery of any kind.

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed May 26, 2010 10:07 pm

Sue, what approach is the physio trying? I havnt been offered physio but I will ask when I go to the vulval clinic

I have thought about trying dialators just to see if it would improve things?

Im still trying to find a biofeedback practioner in London, I emailed Dr Glazer's team and one of them is going to help me find one hopefully otherwise I will purchase the online home kit.

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Sun May 30, 2010 12:54 pm

Hi Sebby,

With my last physio, it was all about using dilators to stretch the muscles and get use to the feeling of the dilator. And from there progress to larger sized dilators. She also made me aware of my pelvic floor muscles and did exercises such as contracting and releasing.

A large part of my problem is around tension in my pelvic muscles. In a normal relaxed environment, all my muscles are actually tense and I was never aware of this. So with my current physio, my homework for the first few weeks was actually getting my muscles to go back to a relaxed state. This involved me spending hours literally just massaging all my muscles - my thigh, pelvic and abdominal muscles. Thereafter, the dilator has been used more as a tool to to touch the vaginal area not stretch (as my body is not ready for that yet - as advised my the physio).

So far, I have found that I am extremely aware of my pelvic muscles and can feel when they tense up. Whereas before, they were always in a tense state. I still have a fair way to go as part of my treatment is also re-training my brain. Because I've had this for so long, my body automatically reacts to anything and anyone foreign including my physiotherapist.

She's also checked my back as well and found I had some tight spots there which can compound the problem. I also get what she calls referred pain and I have days where certain parts of the pelvic area just ache all day and I cant sleep. The next step in her treating me is for her to treat internal trigger points which may reduce or eliminate some of the referred pain I feel. However, I'm not at that stage where she can treat me as yet.

In addition, she gave me a book to read about pain. And for me, it does help to understand this problem more and understand why my body feels pain. Based on the book, the first method of using dilators to just stretch my muscles has reinforced the notion that anything in the pelvic region equates to pain. So the approach taken by my current physio is to ensure any physio treatment & homework never causes my body pain. If it hurts; Stop.

It's a little difficult for me to know whether it's just the physio which has helped my problem. As I am also started taking tablets at the same time to help "de-sensitise" me as well.

Hope I haven't blabbed on too much. Let me know if you want further details

Take care,

Sue

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Re: Anyone tried BOTOX

Post  tweety on Sun May 30, 2010 12:59 pm

Hi Sebby,

In regards to biofeedback, it helped me to strengthen my pelvic muscles which can be positive in the treatment. However, I must admit, until my current physio, I was never aware of the muscles b/w abdomen and vaginal area ; and these muscles were very tense... literally rock hard. But these muscles are very important.

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Mon May 31, 2010 5:10 pm

Thank you Sue, I will definately ask for some Physio or Bio-feedback treatment. The reason I am wondering now more than ever if it is linked to my pelvic floor muscles is becasue prior to the Vulvodynia I had and probably still have Vaginismus.

Sex was always therefore difficult as my muscles would tense up, and dont talk to me about tampons!! lol

I am doing just basic tightening and loosening exercises and the moment just off my own back which I read up on, on the vulval pain society website.

I havnt heard yet from the clinic so i am going to chase up my Gynea, I need to get the ball rolling a bit faster!!!

Thanks for the info it is very helpful

Sebby
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Re: Anyone tried BOTOX

Post  tweety on Wed Jun 02, 2010 1:40 pm

Hi Sebby,

Just to give you more information, even though I had previously gone to a physio and made aware of my muscles, and then did biofeedback exercises which required contracting and releasing the pelvic floor muscles; it's only now that I realise how large the muscle spans and what muscles play a role in the control of the pelvic floor muscles.

Like you, I really had thought I knew how to control my pelvic floor muscles prior to this physio (you know contracting and releasing). But now I can actually feel how my ab muscles and lower ab muscles, thighs all tense up. Im a very tense person. They tense up when Im driving cos driving stresses me out.

To give you an idea of how much work I've done to loosen my muscles, I literally spent 2hrs each day just massaging into my thighs. At the start I got carried away and left a couple of thumb print bruises. I was unemployed the past few months which really gave me a great opportunity to just focus on my homework. Now I'm back to work I'm finding it difficult to find the time to really relax and work on my exercises.

I'm not sure about you... but since I've had to deal with this for a while now... I've found that its become more of a psychological challenge. And now that I'm having to slowly re-train my brain to control my muscles and relax... it's quite difficult at times. There are times where I tell myself to relax and I feel my muscles loosen then it'll just jerk back and tense up. Personally, I like the approach of "if it hurts don't do it" - so no more using dilators for stretching for now - that's my physios orders =)

I see my physio at the end of this week so I'll ask for the title of the book I was telling you about =)

Cheers,

Sue

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed Jun 09, 2010 10:01 pm

Thanks so much for the info, I will be asking my dr about this. Im still trying to chase up my appointment with the Vulval clinic.

Bloody NHS lol

Even if I can just reduce the pain I will be pleased.

Good luck and take care....and I look forward to receiving the title of that book

Sebby
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Re: Anyone tried BOTOX

Post  jules on Sat Jun 12, 2010 3:50 am

Hello.... I have not tried Botox. I have seen mixed reviews on Botox as a treatment option for Vulvodynia. But, I believe in trying everything at least once. I had horrible experiences w/ all creams, lotions, gels and ointments. I tried all steroid creams and ointments and anti-fungal creams etc. They actually made my condition worse. I have never tried the physical therapy but, i am being referred to a pain clinic that has a expertise in Vulvar pain in Minnesota. I am on Neurontin. It cut my pain in half. I see you did not list Lyrica. I am on 100 mg of Lyrica per day. I actually had almost three weeks of little to no pain w/ the addition of Lyrica. I have asked my doctor to increase the dosage. I would ask your doctor about Lyrica. They are currently doing a study in Oregon on the use of Lyrica for Vulvodynia pain. Oh..by the way, I have generalized vulvodynia (pain all over the vulva) I also have pelvic wall dysplasia. I am hoping the physical therapy will help w/ this.

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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Tue Jun 15, 2010 2:08 pm

Im gonna have to get a pen and notepad and note down all the great advice you guys are giving.

I do so need a medication that can help and I would be so happy if one did cut the pain in half

Thanks for the info, just gonna find my notebook lol I will be taking an essay to the vulval clinic!

Sebby
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Re: Anyone tried BOTOX

Post  naomi on Wed Jun 16, 2010 5:20 pm

HI Sebby!

I found it easier to go to new appointments with my Mum or Dad (nothing phases my Dad now with all of my crap going on, Bless him!!) or a mate to go with me. I can get quite upset with it all and its an extra set of ears that helps to listen and write important things down.

Also I print out lists of medications, doctors etc in a timeline so they can see it on a page in front of them.

If only life was a bit easier!!!

xxxxxxx
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Re: Anyone tried BOTOX

Post  Sebby (Admin) on Wed Jun 16, 2010 7:35 pm

Yep I take my mum to every appointment, really helps to have someone wiv you. Especially when they tell you its all in your head! Grrrrrrrrr Mum tells them off! I need the support its so tiring and draining that I dont always feel I have any fight left in me.

The next one to tell me its all in my head will get my newly created level arch file smacked over their head

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botox

Post  sc on Fri Sep 17, 2010 3:45 pm

Haven't tried the botox yet, but it is the next recommended treatment by my specialist. My condition is clitorodynia caused by an injury. Had surgery to correct the tear and have tried everything available for the pain in my clitoral area all to no avail. Sadly the botox is expensive and is not covered by insurance so financially this is not an option for me at this time. Some people are getting some relief with low dose antidepressants, but the side effects can be daunting so you may have to try several before finding one you can live with. I would highly recommend joining the NVA to find a specialist in your area as most gyno's are not prepared and most have no knowledge regarding vulvodynia. Hang in there.

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Re: Anyone tried BOTOX

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