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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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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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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 …

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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 …

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 …

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Has anyone given birth with vulvodynia?

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Has anyone given birth with vulvodynia?

Post  Melanie on Thu Jul 21, 2011 1:06 pm

I have had vulvodynia since I was 16, I turn 30 next month. I still suffer with pain during sex. I seen doctor after doctor for years and my only help has been Xylocaine cream which is use as a local anaesthetic before intercourse. I had pain everyday for about 6 years, now it is only when my diet is bad ( Doctors say that food can change the PH of the vagina) It was a naturopath who helped me to change my diet to treat my Candida(vaginal thrush) and IBS which actually over time diminished my vulva pain, which comes on now when I have eaten too much gluten or dairy or chocolate. I assume that these foods change the PH of the vagina and they are actually mucous forming, so in excess irritate the vagina. My worry now that I am getting older is that I still can't have sex without a local anaesthetic(so problem not solved) cream, HOW am i supposed to give birth? My doctor has said that a caesarian section is an option, however doesn't seem like much fun either. Has anyone given birth whilst still suffering?

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Re: Has anyone given birth with vulvodynia?

Post  Sarah001 on Thu Jul 21, 2011 1:24 pm

Hi Melanie, I can't speak from personal experience but I belong to another health website where a couple of the women have vulvodynia and they said it improved after giving birth as the pelvic floor and vaginal opening got stretched out during the whole process, if you have pelvic floor spasm it may actually help.
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Re: Has anyone given birth with vulvodynia?

Post  Sebby (Admin) on Thu Jul 21, 2011 7:24 pm


Good to hear that giving birth has actually helped some women Smile

Im scared of giving birth anyway to be honest so I would prob opt for a c section. Wont be thinking of having a baby just yet, especially with the meds im on but maybe if I got pregnant I would change my mind?

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Re: Has anyone given birth with vulvodynia?

Post  Melanie on Fri Jul 22, 2011 9:50 am

Sebby (Admin) wrote:
Good to hear that giving birth has actually helped some women Smile

Im scared of giving birth anyway to be honest so I would prob opt for a c section. Wont be thinking of having a baby just yet, especially with the meds im on but maybe if I got pregnant I would change my mind?



Yeah I am thinking at this stage I will opt for c section, however even this doesn't seem like a better option. I'm not ready yet for a baby either however my partner probably thinks 2 years however I think more like 5.

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Has anyone given birth with vulvodynia?

Post  Joolibee on Fri Jul 22, 2011 11:50 am

Hi there. I can't speak from personal experience, but someone I met told me that her vulvodynia disappeared for 3 months after she gave birth. Giving birth requires the pelvic muscles to relax. I have given birth twice, before getting vulvodynia and although I don't know, I think that the intensity of labour would probably drown out any vulval pain, regardless of the type of delivery. I do not wish to put you off having children, I assume everyone knows that labour is painful. But when you are ready to start a family, I would try not to let the vulvodynia hold you back. IF necessary, there is always the option of a C section.

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I have given birth . . .

Post  Heidi on Sat Jul 23, 2011 2:57 am

I've had vulvar pain since I was about 13. I am now 42. I reduced my symptoms by about 80% during my 20's with diet, calcium citrate, and Estrace cream (low oxalate diet, also watched acidity of foods and occasionally did the anti-fungal diet when I seemed to be having yeast issues). Although my most severe symptoms are under control (I have gone weeks at a time without thinking about my vagina or feeling pain), I have never been able to have intercourse without pain. (During a particularly good period, I was able to have very gentle intercourse for a short duration but it wasn't nearly as much fun as "other" sexual activities.)
At 38, I decided I was ready to have a baby. I opted for inter-uterine insemination from a fertility doctor. Some parts of fertility treatment were mildly painful but overall it was a positive experience and a lot less painful than intercourse would have been. I became pregnant with twins a year later. My vulvar pain completely disappeared during the last 5 months of the pregnancy. It was fabulous. Because my presenting twin was breach, I had to have a c-section, although my doctor and I decided that a c-section was in my best interest anyway. She said that giving birth vaginally can cause really bad flare-ups in women with chronic vulvar pain and she thought that was the last thing I needed while taking care of twins. The c-section wasn't bad. I mean, it definitely wasn't great, but it was relatively painless compared to natural childbirth and it healed within 6 weeks (a lot sooner than some women who give birth vaginally). My vulvar pain came back a few weeks after their birth. Breastfeeding hormones can cause flare-ups in a lot of women and I guess I was one of the lucky ones :-> I also didn't follow my diet well and stopped my calcium citrate and Estrace cream because I was so exhausted taking care of twin infants, so that was a big part of my problem too. Now I'm doing better again, but still trying to learn how to follow my diet while cooking for a family.
Good luck. Motherhood is an amazing journey. I hope you feel confident enough to pursue it when you ready.
Heidi
http://lowoxalatefamily.wordpress.com

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Re: Has anyone given birth with vulvodynia?

Post  Heidi on Sat Jul 23, 2011 5:22 am

Hey,Melanie.
One more thing. You might check out the literature on "leaky gut" syndrome. (The Autism Research Institute's website has a good overview). Many people with "leaky guts" are sensitive to gluten, dairy, and oxalate (chocolate is about as high oxalate as it gets). Many of the people on their "Trying Low Oxalates" board are on a low oxalate, gluten-free, dairy-free diet and are seeing a lot of great results for IBS, vulvar and penis pain, urinary symptoms, and various skin, muscles and joint symptoms. (Most came to the board because of gluten-related intestinal symptoms, but added the low oxalate diet to combat burning sensations and pain in their genitals or bladder.) It sounds like you found this diet on your own, but maybe you could get a few more ideas or clues that would help you become pain-free? I've found a few good resources there and am trying to piece together the next treatment that will get me to pain-free.
Good luck.
Heidi

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Re: Has anyone given birth with vulvodynia?

Post  Melanie on Sun Jul 24, 2011 7:40 am

Heidi wrote:I've had vulvar pain since I was about 13. I am now 42. I reduced my symptoms by about 80% during my 20's with diet, calcium citrate, and Estrace cream (low oxalate diet, also watched acidity of foods and occasionally did the anti-fungal diet when I seemed to be having yeast issues). Although my most severe symptoms are under control (I have gone weeks at a time without thinking about my vagina or feeling pain), I have never been able to have intercourse without pain. (During a particularly good period, I was able to have very gentle intercourse for a short duration but it wasn't nearly as much fun as "other" sexual activities.)
At 38, I decided I was ready to have a baby. I opted for inter-uterine insemination from a fertility doctor. Some parts of fertility treatment were mildly painful but overall it was a positive experience and a lot less painful than intercourse would have been. I became pregnant with twins a year later. My vulvar pain completely disappeared during the last 5 months of the pregnancy. It was fabulous. Because my presenting twin was breach, I had to have a c-section, although my doctor and I decided that a c-section was in my best interest anyway. She said that giving birth vaginally can cause really bad flare-ups in women with chronic vulvar pain and she thought that was the last thing I needed while taking care of twins. The c-section wasn't bad. I mean, it definitely wasn't great, but it was relatively painless compared to natural childbirth and it healed within 6 weeks (a lot sooner than some women who give birth vaginally). My vulvar pain came back a few weeks after their birth. Breastfeeding hormones can cause flare-ups in a lot of women and I guess I was one of the lucky ones :-> I also didn't follow my diet well and stopped my calcium citrate and Estrace cream because I was so exhausted taking care of twin infants, so that was a big part of my problem too. Now I'm doing better again, but still trying to learn how to follow my diet while cooking for a family.
Good luck. Motherhood is an amazing journey. I hope you feel confident enough to pursue it when you ready.
Heidi
http://lowoxalatefamily.wordpress.com



Kind Regards for this info. Funny you had twins as my partner is under the impression and made the decision that I am apparently having twins. I haven't tried calcium citrate but will research more now. Do you use Xylocaine cream for intercourse as it sounds like you can't have sex at all? Thankyou so much feel quite happy now.

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Re: Has anyone given birth with vulvodynia?

Post  Sebby (Admin) on Sun Jul 24, 2011 5:42 pm


Congrats Heidi on having your twins. Good to know that fertility treatment worked for you. Gives us hope.

I do feel that I would prob opt for a C Section but to be honest I would do more research before I ever made a decision. Im deff not ready for a baby yet. Im 30, I do worry that I'm leaving it late but I need to sort out my pain levels and hopefully to not have to rely on meds so much.

Im in a relationship but its far to early to get myself knocked up lol I do need to also sort out myself mentally so I am stronger.

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Re: Has anyone given birth with vulvodynia?

Post  Aussie on Tue Jul 26, 2011 2:44 am

Hi Melanie,

There is another lady on here who got to 80% with PT and then after her viginal birth is at 95% or something like that, don't quote me on the figures.

The stretching of muscles seems to make sense. I would get as pain free as possible prior to trying. Ie: diet, meditation, yoga, physical therapy etc etc and if you are on drugs try to ween off prior to trying for a baby. This is what I will be doing. We are planning in about 2 years.

there was an atricle on www.vulvodynia.com.au about women with v and childbirth practices but it seems they are re doing the website and have put the wrong titles on the articles. You may find the article I am talking about on there though, there are a few.

Hope this helps. Claire

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