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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, …

Comments: 6

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

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 …

Comments: 7

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

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 …

Comments: 6


Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

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Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  emalita on Mon May 23, 2016 10:10 pm

I wanted to write down most of the hypoallergenic products and temporary lifestyle changes that my doctor recommends (or as he calls it The Hypocontactant Regimen). Sorry if there is already something like this out there, but I figured I would write mostly everything that my specialist has me doing.

- Eliminate all chemicals that are coming into contact with your vulva, this includes: flushable or feminine wipes (they are the devil in wipe form), shampoo, laundry detergent, dryer sheets/fabric softeners, shaving cream, super soft or scented toilet paper (lots of chemicals go into making super plush TP), any feminine products that are not 100% ORGANIC cotton, douches, etc.

- Shampoo: Free & Clear Shampoo - Wash your hair in the sink or tub. My specialist says it only takes a single drop of shampoo or conditioner in the shower to set off a reaction, and don't try to cheat by just leaning back in the shower.

- Laundry Detergent: All Free & Clear or Cheer Free & Gentle...I personally make my own following the instructions from the below website:

http://www.dwellinginhappiness.com/chemical-free-liquid-laundry-detergent/

- Fabric Softeners: Find alternatives to dryer sheets. I personally just use a little vinegar in my washing machine's rinse cycle.

- Shaving Cream: Vanicream Shaving Cream...Takes a little getting used to if you normally use the foaming stuff. Just make sure to rinse thoroughly after you're done otherwise it can leave a little residue.

- Tampons/Pads: TOTM or Natracare...Do a little research, you will be amazed as to how horrible regular tampons/pads are for our lady parts.

- If you are having sex, your partner MUST use hypoallergenic products also. Afterall, your partner's skin is coming into contact with you. So any chemical residues on their skin can rub off on you. My specialist recommends Astroglide Gel for lube, but that still seems to have too many chemicals in it for me. Also, condoms should be non-lubricated, non-ribbed, and non-scented/flavored.

- No oral sex on you to avoid saliva irritation

- Body & Vulvar Soap: Grandma's Pure Lye Soap...Yep he recommends we use a wash on our vulvas to keep bacteria, yeast, and perspiration low. Pure soaps are too drying for me; so I use Sliquid Splash Unscented wash.

- Wear all cotton undies

- Body Lotion: Vanicream Lite Lotion

- My specialist recommends rinsing (not spraying) the vestibule with Gordon’s Boro-Packs after EVERY urination (I believe the brand Domeboro is basically the same thing). It comes in a powder that you mix with water in a squirt bottle. I believe one packet should be good for the whole day.

- Apply a small amount of Vaniply to the vaginal opening before exercise or sports to avoid friction


I hope this is useful and helps someone find relief sunny

emalita

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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  PainBlogger on Tue May 24, 2016 11:23 am

To add to emalita's good advice above (mainly because a lot of the products named may not be easy available in the UK or elsewhere), here are some of the products I now use:

- Surcare detergent (it's fragrance free and marketed for eczema etc sufferers so gentler than many other products). It comes in powder, liquid, and fabric softener and I've seen it in Savers and Sainsburys and some Tesco stores.

- Oilatum bath formula - I get the junior/kids version because the adult one has fragrance in it. I put one capful (less than the recommended three) into a warm (not too hot) bath.

- Sanex zero shower gel - one has to be careful to make sure it's the fragrance free one because some of the Zero range still has fragrance in. This is available in Tesco and no doubt other supermarkets and chemists. It still has a few chemicals, obviously, but so many less than most products.

- Aqueous cream (preferably SLS free and it shouldn't have added fragrance) which can be used either as soap, a moisturiser or as a leg/underarm shaving cream (but I wouldn't put it anywhere near down below). I get it from Savers as the Boots one has (or used to have) a horrible smelling preservative called chlorocreosol in it.

- Yes lubricant (water-based is better, but there is an oil-based one) - no parabens, glycerine and other nasty stuff. There is a minimal amount of preservative in it (which is essential to get the germs away or it would go off really quickly), but I've not had any reaction to it.

- I've stopped using any sanitary towels that are scented. Bodyform are fragrance free and don't irritate me, though they are not cotton. I tried Natracare but they weren't absorbent enough. There's another cotton organic brand available in the UK called Pravera Organyc and I found that they stuck a bit better and were a bit more absorbent but still not quite good enough for very heavy periods. I'd imagine they're fine for lighter flow though. They can be found here: http://www.pravera.co.uk/organyc anyway.




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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  WaahwaahUK on Tue May 24, 2016 7:05 pm

Just wanted to add for UK peeps - I get my sanitary towels from amazon they're called 'Cottons' and they do a night time towel which I find is good for heavy flows.

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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  emalita on Tue May 24, 2016 7:20 pm

Something else that I think should be mentioned even though I don't have much experience with them is reusable menstrual products. I personally haven't had great success with menstrual cups just because they are too big for me to gently get in at the moment, but for someone who is looking for truly chemical free options, they're worth looking into.

Below is a good website for reusable pads and menstrual cups. I've watched a handful of her youtube videos when I was trying to figure out how to use menstrual cups. She is extremely knowledgeable Smile

http://www.preciousstars.net


Last edited by emalita on Thu May 26, 2016 2:01 pm; edited 1 time in total

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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  PainBlogger on Wed May 25, 2016 2:47 pm

WaahwaahUK wrote:Just wanted to add for UK peeps - I get my sanitary towels from amazon they're called 'Cottons' and they do a night time towel which I find is good for heavy flows.

Thanks for the recommendation. Smile




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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  lindsey_taylor on Fri Jul 08, 2016 7:37 pm

Anyone have any recommendations on toilet paper brands that may decrease irritation?

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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

Post  emalita on Fri Jul 08, 2016 9:10 pm

One lady told me she uses Quilted Northern TP, my specialist says it should be high quality TP, internet searches and blogs say the higher quality TPs are worse because of all the chemicals that go into making them soft and white, etc.

So unfortunately I think it will be trial and error for you because there are so many varying opinions. I personally use Charmin Basic and don't seem to have issues.

Just be careful with recycled TP because it generally contains BPA from recycled sales receipts and newspapers. I recommend googling "allergy to toilet paper" because there are a ton of articles about it, including learning about bamboo TP Wink

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Re: Good Place to Start - Hypoallergenic Products & Temporary Lifestyle Changes

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