March 2013 update … How can we collectively do more to spread the word???

[Heather34]

Hi ladies. As recent as March of 2013, women from all over the world are continuing to suffer in silence with vaginismus. In a recent internet article that I came across, the following March entries were noted:

3/26
“I’ve been suffering with Vaginismus ever since I became sexually active at the age of 15, I’m now 20 and severely depressed because of it as I have tried therapy and dilators but nothing is working…”

3/20
“Hi, I have been married for 3 years now, and have been unable to ever have intercourse. I’m in my mid twenties, and worried that I will never be able to start a family. Every time we try, it feels like it just wont go in, and becomes very painful and feels like I’m burning inside. I don’t know what to do. Please could someone tell me all my options.”

One of the most important things to me post-procedure and once cured from vaginismus was the need to advocate for those who continue to suffer in silence with it and still have not discovered a) what they have and b) that there is a cure out there in the form of Dr. Pacik’s Botox treatment program. I wrote personal replies to both of these women regarding my story and cure from Dr. Pacik’s treatment.

What else can we collectively do to further spread the word and end the suffering for so many more women who remain in the dark about both the condition of vaginismus and this cure???

[rachel]

Hi,
I have just thought of an idea that would raise money for women that need treatment and raise awareness of vaginismus. The question is though, how brave are we all to raise awareness of this disorder in order to help other women?? This is the wuestion that we must ask ourselves if we are going to stand up and prevent other women from experiencing the isolation and lonliness that we ourselves have experienced.This is a question that I have asked myself on a daily basis-how open am I willing to be about my condition?

I was wondering what people thought about wearing a uniform bracelet or necklace to show our support for women with vaginismus. These would not only be worn by women who suffer with this disorder, but by sisters, daughters, friends, family, professionals and other people in society that want to show that they are open to support people with vaginismus. We could go with just a basic rubber band that becomes our colour, or we could go with something like a uniform necklace or bracelet that would not be so revealing, but maybe reveals us to each other???

A rubber band bracelet would definately raise awareness and funds for people who need treatment and it is very simple to purchase. We would just need to come up with a colour that we could all wear. Let me know your thoughts on this.

[Chocolate]

Well – you sort of beat me to the topic. 🙂 I guess I will post it here instead of starting a new thread. I have been trying to design an awareness ribbon for vaginismus/vulvodynia for a couple weeks. Everyone else gets a ribbon! We don’t even necessarily get a doctor who understands our condition, much less a ribbon. So we need a ribbon ’cause it’s only right, I say. 🙂 I wanted a color that wasn’t used (impossible) – or a color combo that is not used (better chance of uniqueness). I decided to try red-pink-white horizontal striped ribbon (think of the patriotic red-white-blue that you sometimes see for 9/11 remembrance) and found out you can’t just buy a red/pink/white grosgrain ribbon. Bummer. But I found some ribbon that contained that exact color sequence – I just had to trim out the rest. So I trimmed. Then, I made the ribbon loop like normal awareness ribbons do, but I left one tail longer than the other, cut it at a sharp angle, and then sliced in between the three stripes, so they separated from each other. So on one “tail” of the ribbon, the stripes are separated. I wanted something to symbolize isolation and felt that was it.
Obviously, the work it takes makes me wonder if it was worth it, what with all the trimming – and I also had to treat it with clear nail polish to keep it from unravelling – but I really do like the design. I have a pic – a very lousy one, I might add – but I guess I can’t post pix here? Maybe I will make it my avatar.

So anyways, yeah, not sure what I am trying to say, BUT – if we are discussing colors, it’s worth noting that no condition/cause has adopted the red-pink-white scheme. I’ve checked lol. It does appear with some of these custom silicone bracelet makers that you can choose to make a bracelet with three colors of your choice.

[rachel]

I like the idea of a bracelet because so many people are wearing them now and I don’t see why we shouldn’t have one either! I am not sure if the ribbon would be easy to wear? I like a bracelet because I can cover it up if I feel like I dont want to talk about it!lol I like the idea of pink,red and white-could that work with a bracelet? The bracelets are cheap to buy and already made-it would be a lot of work for you to do those ribbons. However, we could do both?? There is a significant age span with vaginismus and some women may like the ribbon, while others may like the rubber bracelet idea? I think breast cancer and HIV have both, so maybe we could have both!!

I really think that we need to think of ways to raise awareness and also to raise funds for women that cannot have the treatment. I even thought about a calender!! Imagine, selling a calender to guys down at the fire station to get money to raise funds for women to get their life back on track! They are always trying to flog their calenders to raise money for the fire department!! If you were to do the ribbons and I was to do the rubber bands-how would we market them to raise money?

[Chocolate]

The problem with an awareness ribbon: people will ask you what it is for. Lol. So awareness ribbons will only be suitable for ladies who are ready to discuss this with all family members, friends, co-workers, and complete strangers who are in line with them at the post office. Or, worn by folks in the healthcare realm, who may or may not have the condition, but still want to raise awareness.

As it is right now, I only have material enough to make roughly 70 little ribbons. I have contacted the etsy supplier I bought the ribbon from, to see if there is the possibility that they will get more in. They are all out right now. 🙁

But bracelets – those can definitely be worn in a more discrete way. Especially if the embossing/printing on the bracelet is carefully worded. It could be a source of comfort to the wearer without putting them in the spotlight. http://www.amazingwristbands.com/Standard-Wristbands I played with this bracelet designer thingie for a while. I chose segmented color, and clicked on the “create custom color” link below the drop down box (once the little window opens, it’s easier if you select the standard color tab instead of the all colors tab). I chose true red, true pink, white, true red, true pink, white so the bracelet has six segments of color. You can also change the font type and color ( I thought “Loved Boy” was cute, but I didn’t really look at too many of the font choices). Anyways, I liked this because the bracelet example changes as you make different choices. It was fun to play with.

As far as marketing – that is so not my specialty – is there a marketing expert in the house? Lol.

[Dr. Pacik]

I would love to see some of the designs. Photos can be posted on the vaginismusMD Facebook page http://www.facebook.com/pages/VaginismusMD/174325825994423?fref=ts

Years ago a woman would never publicly speak about her breast cancer let alone admit to having a mastectomy. There has been a revolution among those who support these women and the women themselves going public even with the recent high profile double mastectomy and reconstruction. There are pink ribbons everywhere! Men too have come out of the closet in many ways including erectile dysfunction. The world has become more forgiving dealing with medical issues. Women can lead the way saying no to ignorance, no to shame and no to embarrassment and secrecy. I value all these thoughts.

[Xynabu]

A veryvgood topic.

[Heather34]

I love all of these ideas so, so much and would love to see pics of some of the designs. :):):)

[Janet Pacik]

I would love to see pics so — If someone could email the photo to me or to Dr. Pacik, I could pass it around to all that are interested in seeing it.

[Janet Pacik]

I received a photograph of the ribbon from Chocolate which I have posted on our VaginismusMD Facebook page.

https://www.facebook.com/pages/VaginismusMD/174325825994423?fref=ts

Thank you Chocolate for sending it to us.