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Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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


nothing is working!

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nothing is working!

Post  kellybeth on Wed Aug 08, 2012 10:11 pm

hi all first off i would like to say how glad i am to find a website like this.
i have an 8 year old daughter,at the age of 3 she started having complaints with her down below. after countless times visiting my local gp i was told the same thing,she has thrush or sistitis (sorry about the spelling) she would be up in the night crying saying it was burning and stinging. this carried on untill she was 5 years old then things got worse to the point where she was pulling her hair out in pain screaming for me to help and to take her pain away. it wasnt until last year she was finally referred to a specialist at my local hospital. we tried all types of remedies such as creams,gels,meds,ice packs nothing worked! she finally referred my daughter to uclh where we was told bethany had extremely sensitive nerve endings she referred my daughter to great ormond street to start pain management which is where we are now.this is where we finally got a diagnosis that we had waited 5 years for,it is vulvodynia. her consultant there has put my daughter on 5mg of amitriptyline this also did not work. she had another appointment with pain management 3 weeks ago and he has now upped her tablets to 10mg,this also dont block her pain. she is still up nearly every night for hours on end crying and uncomftable. i just feel like i am hitting a brick wall all the time. i hate seeing my 8 year old like this and im really worried for her future. sometimes it just seems these doctors just dont understand Crying or Very sad
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Re nothing is working

Post  Sunflower82 on Fri Aug 10, 2012 7:52 am

Hi,
I'm too sure what to suggest, but just wanted to say that this is a horrible condition to have and I feel for you and your daughter as no 8 year old should have to go through this. In term of medical professionals I think everyone will have a story to tell. It took me over ten years to get a diagnosis. I had frequent acts of cystitis when I was young between 8-12 year howwever all I needed was a salt bath and it would go away, shame that doesn't work anymore. Over the last year I have seen a women health physio who has been really helpfull, as your daughter is so young this may be difficult as it does involve internal massage, but she did look at other muscels eg my tummy muscels were really tight which I had no idea, I'm also seeing a chiropractor who is running a study about vulvodynia. Which is interesting as she will also ask about your birth and development as a child. My pelvis is not on the right place and a few other things. Other option is to look at diet is she eating foods which are acidic, does she drink squash or fruit juice, fizzy drinks ?

Hope this helps

Kt

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Re: nothing is working!

Post  kellybeth on Mon Aug 13, 2012 11:00 pm

thank you so much for the tips i will defo give them a try. and thank you for taking your time to writ to me, really appreciate it

kelly xx
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Re: nothing is working!

Post  ButterflyLiz on Tue Aug 14, 2012 9:53 pm

Hi Kelly,

I am so sorry your daughter is having to deal with this condition. I hope you have a breakthrough soon.

I thought I would tell you the things that have helped me in case they are any help, though I guess there are limits on the amount of meds you can give kids, I’m afraid I don’t know about that side of things.

So I take 150mg lyrica (also known as pregabalin) per day and this helps to keep my pain at a manageable level. Before this I was on amitriptyline and that didn’t help me.

Also I use a topical anaesthetic down there at night to help calm the nerves, I use instillagel which is normally used to insert catheters and I get that on prescription.

Hope you find something that works soon

xx
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thank you

Post  kellybeth on Thu Aug 16, 2012 11:03 pm

thank you very much liz i will look into the cream xx
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Re: nothing is working!

Post  Loulou on Sun Aug 19, 2012 9:55 pm

Hi Kelly - it's heartbreaking to read your story. I so hope your daughter can find some relief soon.

Similar to sunflower's comments, I found a chiropractor really helped me as my pelvis was misaligned. Maybe worth checking if your daughter has an alignment problem somewhere in her back or pelvis??? (this might possibly be a cause of over-sensitive nerves as bones out of line can effect surrounding muscles, ligaments, tissue and ultimately nerves?? - its all connected)

Also I found in the early days when my pain was really bad that accupuncture helped. This might be scary for a child but i found the needle insertion really didn't hurt and it did seem to help.

Hope you find something that works.
x


Last edited by Loulou on Sun Aug 19, 2012 10:00 pm; edited 1 time in total (Reason for editing : explain why nerve issues might link to skeletal issues)

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Physio

Post  bCherie on Tue Aug 21, 2012 2:17 am

Hi Kelly,

It sounds a lot like it might be caused by 'nerve strain'/internal organ strain.
If creams and tablets etc have no effect. This was my experience.

Basically your internal organs can be out of alignment. If they get pulled up and back this can cause all the never endings in the pelvic region to be 'pulled' up and back too as they are all connected to your uterus. And this can cause all sorts of horrible nerve reactions (burning and stinging around the vulva AND deep stabbing pains in the vaginal passage and uterus). I often feel likke my 'insides' want to drop out too which is a painful sensation.

This can be cause by bladder infections and kidney stones BUT as in my case it can be caused because you are walking, sitting and going to the bathroom wrong (I hold muscle tension in all the wrong places something that can be re-taught). If this is the cause of your daughters symptoms a vulvadynia trained physio should be able to relieve her symptoms and teach her how to use her muscles right.

I don't know if you have physio's in america (perhaps you call them chiropractors) but my physio was trained in vulvadynia treatment in the USA so if you ask questions relevant to my comments above you should hopefully find someone that can help!

As a note similar problems can be caused by having a few discs in your lower spine out of alignment.
OR
You can also have pelvic floor pain (that feeling of insides dropping out) caused by food allergies causing damage to the digestive tract. I had a girlfriend with a little girl with similar problems that was caused by an allergy to salicylates in food.

Good luck finding answers for you little girl poor darling!

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Re: nothing is working!

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