Who we are and why we created this website
Well, as we say in the description of the site and though it may disappoint some, we are in fact just women, we are nobody special or famous, no MD's or famous practitioner claiming to know better.
That is if you think that a bunch of women like you, who went through vaginismus and then decided to get together and worked hard to share their knowledge and their journey for free, to help other women, are nothing special...
We are vagina warriors, or vagina's angels if you wish :)
This is a "patient-led" website or as we prefer to say, a women-led website, since vaginismus is not an illness.
Many patient-led sites or self-help sites, like for instance the British Dipex are entirely run by and for people with a specialist interest who make no claim to be 'expert' but have a lot to offer to fellow-sufferers.
Patient-led websites were born out of the belief that these days doctors do not necessarily know better than "patients" who get together and share their resources. They may know the medical details better, but often have a hard time understanding what it FEELS like to have a certain problem in one's daily life and they lack to see the bigger picture.
Now that the Internet gives a chance to thousands of people to share information about a certain medical issue, it is seen as a bit paternalistic how some Doctors still want to keep control over health messages in the media or reduce certain complex issues like vaginismus to medical, biological levels only.
So here we are offering personal experiences and shared knowledge of vaginismus which hundreds and thousands of women are sharing together by now through the web.
This is a free, non-profit website and we all made and make zero profit from it.
We are all volunteers who decided to help out and create or collaborate freely to this project, some of us inspired by religious principles, Buddhist and Christians in particular, some by feminist principles, and all inspired by a core belief in the need for women empowerment through knowledge and awareness, believing in the amazing strength that comes when women share knowledge together, breaking taboos and speaking up freely.
We already exposed and disclosed a lot of ourselves and our relationships in these pages, which at times was a tough choice, and if you have vaginismus you will easily understand our wish to keep our names private on a website which is read by people all over the world we have no control over. We prefer not to disclose our real names and those of the many cool people who collaborated to the site, not only to protect everyone's privacy and confidentiality, which have already been put to the test by people who abused our trust, but also because our names would be quite irrelevant. We believe what we wrote and shared here speak for itself and that you will be able to decide whether or not this site is trustworthy and helpful based on its content.
When we say we're "just women" it doesn't mean we are not highly educated ones, skilled in different sectors..
Among the people who contributed to the site or acted as advisors, you could find women who researched extensively on vaginismus and related topics, who studied with success in famous faculties of Medicine and got accepted to do research on vaginismus there, or who are currently carrying one out; you could find nurses, sex ed. teachers, alternative medicine experts, women who run women's information centres and so on..
But we write here as women who went through vaginismus.
On top of our own expertise, some of us were treated or helped by very good gynaecologists/sex therapists/physical therapists whose advice we treasured and as you can see from our list of References, we have read extensively on vaginismus and related topics, so you will find plenty of references to scientific information, sound websites and books or scientific articles which we thought would be very helpful.
The sheer number of women who almost daily say they found this website extremely helpful or who are self-treating vaginismus on their own and for free thanks to our advice is enough for us as a testimonial, but it surely feels good to know that even some gynecologists, doctors and therapists have recommended this site to their patients and found it very useful and accurate.
Though the website itself is based in the U.S., women and men who collaborated to write, translate, edit and publish this site come from the United States, England, Australia, Italy, South America, Germany, Indonesia and many other places.. A real network and chorus where everyone played a different part, gave her or his contribution according to their skill and capacity, each one precious.
If you joined a support group or a forum on vaginismus, as we recommend, you would find that we just gathered the best or most common information that any woman could learn in there in months and years of constant information exchange.
Many women in those groups started expressing the wish and the need to spread awareness or to have a place where they could get organized unbiased information on vaginismus and self-treatment, so that's how the idea of a network slowly took form.
As for coming up with the idea of a website for that purpose, that is what the webmaster has to say about it:
"Actually I have to first thank a woman who encouraged me to go study Women's Health in a good University where I had a chance to research vaginismus, and then an acquaintance of mine, who one day told me I should have written a book on vaginismus given my knowledge and my passion for it.
I wasn't so sure I could do it but my soulmate gave me the confidence I needed, but also said to me: "Why a book? Women would need to buy it and some can't afford that or don't speak English. Why not give that information for free instead, through a website and translate it?"
I couldn't see any reasons to object. It all sounded extremely stimulating and helpful, though challenging (especially cause I was also advised to learn HTML on my own!).
So there you go. That's how a journey of 6 months of hard work and sleepless nights began before my baby was born. And sleepless nights even after it was born :) since we had to protect it a lot.. But it's a baby we are very proud of."
In the articles we tried our best to use and quote evidence-based facts and give information and tips we have references for, but as we say in the disclaimer we are not pretending our advice is medical information you can follow blindly. Vaginismus can be perfectly self-treated on your own, but a good gynaecologist and vaginismus specialist (or any other specialist etc.) can be helpful to have around especially if on top of vaginismus there are other issues (infections, vulvar pain, past traumas etc.) you have to deal with.
Having said that, we have been around enough to witness how a LOT of doctors and gynos are pretty clueless about vaginismus, as some admit themselves or as you can read in the stories shared in any other forum on vaginismus, so we felt there was a great need for better awareness and information even for them. After all, they cannot be blamed for not diagnosing vaginismus properly when gynecological textbooks available in their faculties only dedicate a few chapters or lines to it, and when women's real experiences of it and the social context are rarely included.
This website is a work in progress and you too can add your own bit, as many did, by sending us opinions or personal experiences which with your permission we may add to a relevant page if we deem it appropriate, trustworthy or helpful for the community.
Our aims and our drivesOur main drive was to help spread awareness on vaginismus so that more women get informed about it and the shame, secrecy, suffering and pain can stop for them.
Another aim was to prevent vaginismus especially in young women by correcting a lot of myths on first-time sex, vaginas, vulvas, tampons etc. and by removing some of the pressure young women (and men) are under, to be or act sexual if they are a couple, and to give intercourse the centrestage in a relationship, rather than love and understanding.
One of our drive was also to challenge the commercialization and exploitation of vaginismus which we see as rampant. Vaginismus as a condition is scientifically proven to have extremely high success rates and can be self-treated at home too, so women should think twice before spending huge sums of money to solve it or before believing those who tell them that they cannot treat it on their own.
Although we do favour a treatment to solve vaginismus (Self-treatment through Systematic Desensitization a.k.a. Dilating), we chose to list all the possible treatments of vaginismus with their pros and cons, firstly because we're not God and also because we believe that women are all different and may need different treatments or combo of them. We believe women are intelligent beings capable of making the best decisions for themselves when given clear information and options.
Being non-profit, this site is free to represent a voice outside the chorus that challenges the typical view of vaginismus as a dysfunction which needs to be treated asap by a professional at all costs. We encourage women to ask themselves a few questions before they even begin to treat this.
We also wanted to challenge the common view that recites that sex (intercourse in particular) is what binds a couple or makes a couple even.
We believe in fact that a woman can be perfectly loving and lovable even with vaginismus, even without a vagina, just like a man can be perfectly loving and lovable even with E.D. or without his penis..
Of course there are people and pharmaceutical companies profiting from making humans believe otherwise..
We are just saying; be careful..
So we do not see vaginismus as a dysfunction, we do not pressure women to fix it at all costs, we do not sell a treatment and we do not believe couples are not couples if sex isn't in the picture. Maybe we have too high an opinion of what human beings can be like, but we'll stick to it.
We heard of far too much suffering related to the inability to have penetrative sex and we want that to stop for as many women as possible.
We talked to women who suffered bad side effects from medicines given to them to fix vaginismus, who got their vaginismus fixed but were left with new problems to deal with cause their partners weren't changed; women who were deceived into spending a lot of money thinking there was no chance of self-treating vag. on their own; women who were cheated on, threatened or sexually abused by their husbands because of their inability to solve vaginismus; women who not surprisingly told us about traumatic experiences from their past which caused or contributed to vaginismus...
So rather than focusing on fixing vaginismus, as most sites or texts on vaginismus do, we decided it was important to validate the reasons why women develop it, to validate women's bodies and intuition to begin with, to try and change such pervasive attitudes in society which cause women to be judged and loved according to their vagina's abilities to have sex or procreate.
We encourage women to see vaginismus, and the dilating process, as a journey of self-discovery.
As our motto goes: "Vaginismus isn't the problem, the way society looks at sex is..."
Our thanks and gratitude go to:* The hundreds of women with vaginismus (and some men) who shared their stories, spoke up about the condition or emailed us with feedback and information which helped us improve the site.
* Our partners, who we want to publicly thank here for not being obsessed by coitus and for being so loving, understanding, challenging, supportive and just plain adorable :)
* We also want to thank here all the generous women (and men) who translated parts of the website in Italian and Spanish for free. Thank you for your enthusiasm. We hope more will join in.
* The people who added a link to this site on their site or gave it positive feedback without being paid for it.
* The humble doctors and gynaecologists open enough to have recommended our website to their patients and used it to learn more about vag. themselves.
* Companies (www.SoulSource.com and www.OwenMumford.com) who generously donated free dilators to some of the women in our forum.
Let's keep spreading awareness and sharing it freely to women who need it.
We are open to suggestions so feel free to come on board with your ideas or experiences.
We appreciate criticism too. As long as it doesn't compromise our core beliefs, we have been willing to change sentences or parts of our articles which some women (and men) found a bit insensitive or unfair or slightly confusing. The article on Vaginismus and Pornography for instance, has undergone a lot of transformation because it has been the subject of fierce criticism from some and great support from others so it was a tough one and we cannot please everyone, but we try to keep both perspectives into view.
Also, our list of pros and cons of the different treatments for vaginismus is by no means exhaustive, so feel free to write us to share your own pros or cons and your experience.
We try to reply to all emails so feel free to drop us a line and we'll see what we can do together.
Bye now and thank you everyone
you are the network..
|DISCLAIMER: This site is not designed to provide medical advice. All material is gathered from the experience of hundreds of women who experienced vaginismus but it is for information only and is not intended to be a substitute for professional or medical advice, diagnosis, and treatment. Please review the information contained on vaginismus-awareness-network.org carefully and confer with a health care professional specialized in vaginismus, as needed.|