Taking action!!

So….I was thinking. It’s been ten years since my v problems started. When I first got diagnosed, information was lacking, doctors were clueless and the one drug that actually helps me hadn’t yet been invented. Over the intervening years, things have improved *slightly*, but not nearly enough. Women, on the whole, still don’t know about vulvodynia. The medical profession, on the whole, are still pretty clueless. Research is inching forward at a ridiculously slow pace. None of this is acceptable.

Up until now, I’ve laboured under the vague assumption that at some point, someone, somewhere, will do something about all of this. Well, it hasn’t happened so far. I’m no doctor and no politician, but I think it’s about time I step up and do whatever I can to get the word out. I’m a “behind the scenes” kinda girl and writing is one of my strong points, so I am going to badger everyone I can think of who might have some kind of power to improve the lot of current & future vulval pain sufferers.

I’ll post updates about letters & emails I’ve done, and if anyone else wants to join in then that would be great. They don’t have to be great long letters that take hours to compose and if we all raise our voices, it’ll be harder to ignore us. I reckon together we could make a real difference.

Action number 1… last week, I emailed NHS choices (the website for the NHS in the UK which provides information about various medical conditions – www.nhs.uk) requesting that they add the conditions vulvodynia and vestibulodynia to their searchable conditions.

I pointed out how important it is that women have access to quality information both before and after they have received a diagnosis. How disheartening to be told “you have vulvodynia”, to go home, search it on NHS’ website and..nothing comes up. I’m sure we have all done our fair share of Internet searching and have come across conflicting and sometimes just plain wrong information about these conditions. Also, as the NHS have treated many of us for these problems, they really have no excuse not to add them!

So far I have just received a bog standard “we will forward your comments to the correct department” reply, to which I replied, saying that I hoped I would receive an actual reply to my concerns from that department.

I submitted my comments on the feedback page of their website, under the categories “NHS Choices website”, “Website content” and then “Conditions and treatment information”.

Sooo... after the above, NHS Choices emailed me back to say that they have many conditions that they want to add to their website and vulval pain has been on their list for a while. Apparently they have had many requests to add it so are going to prioritise it. Good news, let's hope it appears soon and provides lots of good quality information.

It is so important that this condition gets more publicity. So glad to hear that you've taken action and actually gotten some recognition on the website. There IS strength in numbers for sure!

You're amazing Liz!!!

Ahhhh, not really, but thanks! Just trying to turn 10 years of anger and frustration into something positive and fruitful! Onwards & upwards xx

Ladies, I've done a post about vulvodynia for my friend's blog. You can find it here (second article down, dated 20th Jan):

http://www.fanniesrule.com/diary.html

I would have liked to put a bit more about possible causes & treatments but had a word limit and think I achieved what I sent out to, i.e. raising awareness, and pointing people in the right directions for more info.

I met Sarah, who runs the blog, at the recent VPS conference. She doesn't have vulvodynia but does suffer from vaginismus & wanted to expand her knowledge in order to better support other ladies in her support group & raise awareness of all vulva/vagina related conditions. She's a very inspirational lady and runs various women's groups in London, as well as writing about various sex and health related issues for multiple publications. She has quite a high profile so hopefully, therefore, lots of people will read my post & learn a bit about v.

That is absolutely fabulous!!!!! Ive been so angry and I get even angrier when I read other womens stories. We should not have to suffer in silence. There isnt enough attention being paid to this issue. Ive been wanting to do something about it but I just dont know how to go about it. Im so angry that I would love to get women together, hold picket signs and march to the White House demanding that they find some sort of relief for us.

Right now I feel invisible. I suffer from this in silence but I dont want it to be that way. The word needs to get out.

Absolutely! After 10 years of this crap I have no shyness left in talking about my vulva, and have realised that that is exactly what we need to do to make ourselves heard. I think part of the problem is people without this condition find it hard to conceive that such a thing could exist. After all, even when you have it, you have to dig for info. Understandably, many of us don’t want to talk about our problem at all, much less make it common knowledge and many of us may simply not have the energy to do this stuff while dealing with pain too but the more of us who do, the better. One of the first medical articles published about vulvodynia was called “Battle with a unicorn” i.e. is it a mythical condition, which is a battle I think we’re still fighting today.

I have always had a tendency to direct my anger over this towards myself but this way is sooo much healthier and more productive. I totally intend to research more things we can do, more people we can write to etc but it all takes time on top of the day job.

Places for ideas for actions include the final chapter of “The V Book” by Dr Elizabeth Stewart & the Campaign to end Chronic Pain in Women (http://dev.endwomenspain.org/take-action). I’ve also realised it’s not just vulvodynia. There’s a whole other world out there of people who live with all kinds of chronic pain every day, or uncomfortable or unpleasant vaginal problems. The recurring theme is “we don’t know what causes it”, “more research is needed”. I’m so sick of hearing that. I’m so sick of people being left to suffer. Grrr!

Just wanted to saying, reading this has inspired me. When I have time, I'm going to write a letter to my doctor who initially treated me (if you can call it that) to explain what I have and how disapointed I was at how he treated me.

There is a template for letters to your doctor on the National Vulvodynia Associations's website. Look onthe Volunteer page.

[url] http://www.nva.org/volunteer.html [\url]

I've been thinking about doing this for while, but for some reason always talked myself out of it. I'm not much of the activist type and tend to just leave things alone. Hopefully this time I'll follow through. I also recently put up a bad review on this doctor on a ratings website. Though I was seen by this doctor in 2009 it's never too late.

ButterflyLiz, thank you for the link to the End Chronic Pain in Women site. I found it interesting. It is sad how many people have to suffer and how little research is being done. This is something my family can related to. My mom has Celiac disease and had symptoms for 10 years before she was diagnosed. I know this is different than chronic pain, but the situation with V and other chronic pain disorders reminds me of that. When she was first diagnosed, not many doctors have heard of it, let alone understood it (at least in the U.S.). She was bounced around from doctor to doctor for years with no answers to what was going on. When I first got diagnosed with V and heard how long many women suffer without a diagnoses, it reminded me of how my mom was treated. It's so sad and frustrating that we pay doctors so much money and there are a number of conditions they don't adequetly know about or can't diagnose properly.

Kam, that’s great. Doing an online review of doctors is a brill idea. What site did you use to do that? I found this one for the UK & might do a couple myself – of both the good & not so good ones! https://www.iwantgreatcare.org/en. You’re right when you say it’s never too late.

I’m so sorry to hear about your Mum, I hope she is able to manage her condition better now that she finally has a proper diagnosis. I think it’s about time the world (including doctors) wakes up & realises how many medical conditions we do not have answers for!

Wishing you pain-free days x

I wrote the review on http://www.ratemds.com/. I'm not sure if it's a popular one or not. I was bored at my lunch break and googled that doctor to see if others had issues. This was one of the sites that popped up. I didn't have to sign up or regester to write the review, which was the main reason I wrote it.

It is so frustrating that the cause of a lot of issues aren't understood. I realize there are a lot of mysteries to the human body, but I get the impression that a lot of times things are misdiagnosed out of laziness. Just slap a lablel on it, treat the symptoms, and don't worry about finidng what the underlying problem is. I find this incrediably frustarting.

And my mom is OK, thanks for asking. I don't think she has too many complications from being undiagnosed for so long (though there are some), so she's fine if she doesn't eat gluten. I wish gettig rid of V was that simple!

Something some peeps might wanna do is sign up to the NVA (national vulvodynia association)'s mailing list. They are based in America & they send out emails every now and then with actions you can take (e.g. the latest one was about writing to the Senate health committe encouraging them to attend today's hearing called "Pain in America: Exploring Challenges to Relief"). They are mostly America-based so I can't always do the actions.

The info page is here, you need to send them an email with your details as it says:

http://www.nva.org/email_newsletter.html