Things I haven't tried so far (Laura)

Following my earlier post listing everything I've tried in order to heal, I am aware that while this is a very long list (!), it doesn't cover everything out there. I think the more you explore, the more you find to potentially try, which is a great thing and this has taken me on an inspiring journey along the way. However, there are some more obvious things for v pain which are distinctly missing from my earlier list and I'll explain below why they are not on there:

Low Oxalate Diet

This is a diet that eliminates, or vastly reduces, oxalates in the diet, with the thought that when we eliminate said oxalates through urination, they irritate the vulva area. I read a whole book on this then decided that it didn't resonate with me. I don't have pain on urination and most of the foods it tells you to eliminate are healthy foods and I didn't want to compromise the rest of my health.

Botox Injections to Numb the Nerves in the Area

I wondered about this but:

a) it only lasts a few months before you need the injections again

b) it is a cover up, not getting to the route of the problem 

c) I discussed it with my physio who was highly alarmed! She said it totally contradicted what she was doing with me and that I cannot work with the muscles to heal if I am consciously numbing them at the same time! Fair point 

Surgery to Remove the Painful Area(s)

Gulp.

Again, this will often be carried out without knowing what caused the pain in the first place, meaning that the cause could still be there.

I have read mixed reports on success rates but it looks to be in the region of ~20% chance of improvement (and even lower chance of a complete cure) and ~50% chance that it will get worse. Not great at all.

I did ask my gynaecologist about this years ago and he immediately advised against it as it is very disfiguring and doesn't have good success rates.

I'd be interested to know if any of you have had any success (or disappointments) with any of these treatments. If so, get in touch!

Healing from shame

At the age of 33, I have never had sex without being in pain. Through a very long and drawn out course of well over a decade of seeking answers and a cure, I have been diagnosed with vulvar vestibulodynia (a subset of vulvodynia, also known as vestibulitis) and vulvar dermatitis. The latter is linked closely to my overall tendency towards dry skin and eczema although on examination, I look healthy.

Naturally this has greatly affected my relationships and led to me generally staying single so as not to be in pain. I was so embarrassed at the thought of telling a boyfriend or anyone for that matter, that I largely suffered in silence, ashamed of this mystery illness that I appeared to have developed for no obvious reason. Doctors were telling me there's nothing wrong with me and that it's "just psychological" yet my body was screaming out in pain. For a really long time, I couldn't talk about it without crying and I spent so much energy on hiding it from anyone and everyone, even those closest to me. My absolute worst nightmare was someone finding out. I have spent many years trying different healing modalities from west to east which, while teaching me a lot along the way, have, for the most part, not made a difference to my vulva pain.

It was mid-2014 when I decided that if I can't cure the physical pain, I can at least work towards losing the shame I feel surrounding it all. Which had arguably been the worst part for me. If I had the same pain but in my arm say, my life so far would have been a lot easier!

So I have embarked on a journey. I spent 3 months with a psychotherapist. At that point I was working 12-15 hour days in a very stressful job which I was not sad to leave on having saved up just enough money to take two months out to travel and essentially, rejuvenate. This gave me a lot of time to think and in November 2014, I wound up in Bali where I stumbled across Sacred Wellness Institute, the most amazing, life changing retreat week of healing that I joined alongside four other women facing other life challenges. No one else there had vulva pain but I was given the space and understanding to share which I found so hard but knew it was what I was there for. I finally told my family who were very supportive. I was nurtured and told by various practitioners there that I was holding a lot of pent up tension in my lower chakras.

Bali was a mind blowing experience and I was floating on air for months! Since then I have got a new job with more respectable hours, spent a lot of time watching TED talks and documentaries, reading books and articles, all on vulnerability and wellness in general. 

Don't get me wrong, I still have a lot to work on but I now don't get upset when I talk about my vulva pain. Rather, I can just be quite matter of fact. I have a wider support group of people closest to me that I can talk to. These parts of our bodies embody the power of recreation. They are the essence of our femininity which is a beautiful thing. None of us have anything to be ashamed of. 

What I really realise now from all my deep delving is that the shame I've felt around that area of my body and my sexuality has actually been a big cause of all my pain. A huge breakthrough! Every time I used to wince at the thought of my pain or thinking about trying to have a relationship right from early teen years, I was unknowingly tensing even tighter. I am now seeing a brilliant physiotherapist who is working internally to release this tension and retrain the muscles. It is very slowly working. Meanwhile, I now realise that as a stubborn and chronic condition, I cannot only try to heal with external things. It must come from within.

In the words of Dr Lissa Rankin:

"When we focus only on strictly physical and biochemical diagnoses and treatments, we miss a potent opportunity to allow illness to serve as a vehicle for personal growth and spiritual awakening".

I am now feeling more positive than ever that I am on the road to recovery. And I feel stronger and better than ever within myself. If you are in the same boat as me, what uncomfortable emotions do you have that could be stopping you from feeling as well as you deserve to feel? It's not easy but maybe this could be your answer.

Write for My V Matters - 'cuz yours does too!

So after a lot of dragging my feet and hemming and hawing, I have finally decided to move on from writing this blog.

What was the clincher? My uterus. I was doing a mind body meditation in which I was chatting with my body and seeing how it was doing and noticed that my uterus was kind of dull and drained. I checked in with it and asked how I could help, and the answer was loud and clear: "Give up the pelvic pain bandwagon for cryin' out loud! You've got one foot in, one foot out, you don't really want to keep doing this, and I am so over it." Since my uterus is the queen of my creativity, I heeded her advice. And immediately felt more energized.

Sometimes no amount of brain thinking gives me the immediate clarity of physical wisdom. 

I have closed my Yoga for Pelvic Pain MeetUp group, and notified another organization that I won't be available to teach for their patients this spring. I withdrew from a pelvic pain workshop.

And it feels GOOD.

* * *

What of this website though? I've worked so hard to make My V Matters matter, isn't that worth something? I don't want it to become one of those sad, abandoned blogs...

One option is to thank it for its service and kill it off, but I wanted to give you, oh wonderful community, a chance to keep it going.

I got this idea from another blog: writer rotation. Rather than remove the blog or leave it as one of those dreadful inactive ghost blogs, I would have another woman take over writing responsibilities for a year. My old posts would stay up, and readers would benefit from another perspective. At the end of Writer #2's year, she could commit to another year or pass the torch.

What is the benefit to you? I learned so much from forcing myself to write consistently on this topic. It encouraged me to be more active in looking for outside resources, and has also been a great tool for self-reflection, confidence-building, and learning to be more loving with myself.

Interested? Here's what I'm looking for in a second writer:

• Tone: I would like to keep the tone of this blog the same: honest about the challenges v pain presents, while still being hopeful and positive. We want to uplift readers, not bring them down!
• Content: I have written a lot about spirituality and the emotional side of v pain, but you would be welcome to take it to a more technical or science-y place if that floats your boat! As long as it is about v pain and your experience, that's cool. Also, I have chosen the written word as my primary medium, but you don't have to: you could provide poetry, video, music, visual art, etc.
• Your writing background: You don't have to have any special degree or background in writing, but it would be great if you enjoy writing and can write clearly, without spelling mistakes or grammatical errors (unless done on purpose for creative expression of course!) 
• Images: *Any and all images would of course have to be legally obtained,* ie your own or used with permission (no copying and pasting stuff off the web.) I learned how to use Canva (the free version) to create images for each post. You could use Canva as well, or provide your own imagery: drawings, photos, whatever.  If you are really opposed to images, it's not a deal breaker - maybe we can redesign to site to make it look good without an image for each post.
• Frequency: I currently write once a week and post on Wednesdays. You do not have to keep the same schedule, but I would like you to commit to completing at least 12 posts (ie one a month), preferably on a consistent schedule of your choosing. Of course, this is a hobby and not a job, so you might not hit that target, but I would like you to at least be aiming for one. (I don't want someone to pump out 15 posts in a week and then do nothing for the rest of the year.) Part of what creates community, and the personal growth benefits of writing, is consistency and showing up. :)
• Money honey! I pay an annual fee to Squarespace for hosting the blog and the use of their tools. If I am to pass the reins onto another writer, I do not want to keep paying this fee. If you are willing to take on that cost yourself, awesome, but if you are not able to than perhaps we can set up a donate button or pass the hat somehow? You don't have to be able to front the money yourself, but I would require a willingness to help me problem-solve that issue.
• General Awesomeness: Since you and I would be working together to make this happen, it would be cool if you are generally awesome: respectful, responsible, creative, someone who would be great to work with on our little two-person team, but also someone independent and committed enough so that I can step back knowing that the website is in good hands.

If you want to write for My V Matters for a year, please let me know by February 1st, 2016, and write a sample post and a paragraph about why you'd like the gig by February 15th, 2016. (That will give you enough time to write a post, but if no one is interested I'd rather know sooner rather than later.) Start time is negotiable, but I am thinking that you would be taking over by March 1st. You can get in touch through the contact page.  

Til then, to a happy pelvis!

Blogger Buddy Time!

Last week I got to do something AWESOME.

After a year or so of email correspondence, I finally got to meet Sarah, the blogger behind When Sex Hurts There Is Hope. Yay! She was in town visiting friends, so we got some lunch and walked around Lake Merritt.

Even someone as public as I am about v pain still has a hard time finding other women willing to identify themselves as being in the same boat. Given our cultural context, v pain brings up enormous baggage: boatloads of shame, fear, and lots of other yucky stuff. Better to just shove it back in the closet and ignore it, right?

So I understand cognitively why there is so much silence, and I understand on a gut level because of my own personal experience. I took me a looooooooong time to open up about this topic.

But ya know what?

Shame derives its power from being unspeakable.

- Brene Brown

So when two women get together for something as simple as a chat, they are actually being amazing revolutionaries at the same time. (How's that for multi-tasking?)

Let's face it, it took Sarah and I heckuva lot of time and effort in the personal growth department to make that little lunch possible.

I am so proud of us!!!!!!!!!!

I love Sarah's blog because she and I have the same aim: to be truthful about the real, significant, and deep challenges of v pain while still being, as her blog title notes, hopeful. But of course her site is also completely different because it's being written by a different person having different experiences. I encourage you to check it out - she has some awesome posts coming up! 

Research Participants - that's YOU! - NEEDED

I was renewing my NVA membership recently and the "Urgent Appeal to Vulvodynia Patients" on the home page caught my eye.

Apparently some studies on v pain have been cancelled because researchers couldn't find enough patient volunteers. Yikes!

For so long v pain was completely ignored by the medical community, so understandably many women are frustrated by the lack of attention and quality treatment options available. But now that they ARE beginning to research it, well by golly, we'd better step up and help out!

I mentioned an online study that you can easily participate in not long ago - you can find it the post about it here or jump right to the link here.  You can find additional studies you may be qualified for through the NVA's web page on the topic. 

* * *

I can't help but wonder why researchers are struggling to find subjects. Is it because suffering women don't know about these opportunities? The cultural silence and shame around this topic would definitely help to explain that, and encourages me to continue to be the change I wish to see in the world by writing this blog, among other things. 

Or is it that enough women know about the studies (again, doubtful)...but they are too shy or scared to step up? Is it because they are afraid treatments could make things worse, or the proposed treatment is somehow unappealing? Are they averse to being labeled, or coming out of the denial closet? Or do they just not prioritize v health, an understandable situation given the many pressures women face? (Note all of these reasons can be traced back to cultural shame and silence.)

If you are interested but concerned about volunteering for medical care that doesn't jive with your preferences, fret not: some studies are researching acupuncture, others looking into drugs, others are simply gathering data on the people affected. Peruse the listings, you might be surprised to see that there is something in your comfort zone. (Or ya know, in the neighborhood at least. Because nothing having to do with v pain is in anybody's comfort zone, amirite?)

It could be that there potential recruits who are willing but ineligible - for instance, studies often require that women are not pregnant or trying to get pregnant, or focus on a very specific set of symptoms or age bracket, or require that you aren't taking other medications.

Regardless of the reason, I would hate for the emerging research on v pain to fall apart because we the patients didn't supported it. Noooooooo!!!! That would suck so hard.

I strongly encourage you to consider participating in scientific research, for your health and those of others. Check it out! By participating we get to be each others' medicine. How cool is that?

* * *

PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!