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When your heart was open wide and you love things just because

30 Sep

I am not generally one to post long quotes of other people’s content, nor am I one to post profanity since I know that some people find it alienating or off-putting.

But. This is ringing loud in my ears lately, and I thought that it might resonate for other ladies with chronic pelvic pain.

So many women with pelvic pain conditions are living in discomfort that is exhausting. I am lucky that my condition usually only causes me pain during intercourse, but I will be honest and say that my treatments (which I am totally grateful for and happy with) have caused me to experience a lot of ongoing pain during day-to-day activities, particularly in trying to sit through classes where my movement is restricted. I have some days where I am supposed to be sitting for close to eight hours in unpadded chairs with very little opportunity to stretch properly (as you can guess, the kinds of stretches that I would need in order to relieve the pain are not exactly ones you can do in public…!), so I have been getting a small taste of what some pelvic pain sufferers go through every day for many, many years.

This ongoing pain, along with the relationship strain and impact on self-image that comes with malfunctioning sexy bits, makes it just so, so likely that we will experience challenges in maintaining good mental health. So many of us are depressed or anxious or have panic attacks or just plain feel bad about ourselves. Some of us are lonely or have been abandoned because of our conditions.

This text speaks to the layers of this experience and to the pure, raw, angry and hopeful determination it takes to push back and push through the problems our bodies are facing again and again and again. So, enjoy. I’ll be singing this as I walk the hour home from physio tomorrow, feeling the ache of battered and unhappy muscles kicking in but refusing the take the bus because damn the pain. It’s a beautiful day and I’m walking home.

excerpt from “A Better Son/Daughter” by Rilo Kiley

And sometimes when you’re on,
You’re really fucking on
And your friends they sing along
And they love you
But the lows are so extreme
That the good seems fucking cheap
And it teases you for weeks in its absence

But you’ll fight and you’ll make it through
You’ll fake it if you have to
And you’ll show up for work with a smile
You’ll be better
And you’ll be smarter
And more grown up and a better daughter or son
And a real good friend
And you’ll be awake
You’ll be alert
You’ll be positive though it hurts
And you’ll laugh and embrace all your friends
And you’ll be a real good listener
You’ll be honest
You’ll be brave
You’ll be handsome and you’ll be beautiful
You’ll be happy

Your ship may be coming in
You’re weak but not giving in
To the cries and the wails of the valley below
And your ship may be coming in
You’re weak but not giving in
And you’ll fight it; you’ll go out fighting all of ’em.

in which I insist that I am not a sexual deviant, honest

27 Sep

Okay, okay, I have not been a faithful blog-writer. I know. But I have been a very faithful physio-doer. If that is a thing. And if it is a thing then it describes me perfectly because I have been kicking this physio’s ass. Well, I’ve been kicking it’s ass 6 days a week when I do 30-40 minutes of daily exercises. It’s been kicking MY ass 1 day a week when I go in for my treatments. Because ouch. Let’s just say there is a whole lot of manhandling of things I did not think would ever be manhandled in such a way.

And the physiotherapist always tells me to pay attention and see if my vagina hurts afterward, but it never does. It always feels perfectly fine. My inner hips on the other hand? Super sore and achy, sometimes for DAYS. She releases them by applying (what feels like) large amounts of pressure on the muscles and apparently they don’t like that. I think I’m making progress though. I didn’t realize that my whole life I had had so much tension in my whole pelvic region. Now that I am learning to relax this area, I can really notice the difference between my tight moments and my relaxed moments. My medium-sized dilator is getting a bit small, I think, since it is really not providing much stretch, so it might be time to go back to the sparkly silver one (which is slightly larger). I think my internal muscles are loosening up quite a bit. At my last appointment she gave me a serious internal vag massage (seriously. never. thought. i. would. say. that.) and upped the ante to a 2-finger stroke. That was new. Anyway, I know this all sounds horribly weird and awkward but my physiotherapist is really great and somehow I don’t even think most of the time how totally bizarre it is that I am paying some woman enormous amounts of money to massage my genitals once a week.

Okay, let’s not talk about it anymore. I’m feeling like a weirdo.

Is this that bit about all things working together for good?

13 Sep

I’ve about a hundred pages to read by lunch tomorrow, but I had to give a quick update on the treatment front. I am SO grateful to have found my physiotherapist. Things are looking up. I’ve only met with her three times, and already there has been a huge improvement in my muscle tension. I’m on a break from intercourse for a few more weeks probably – we don’t want to traumatize my pelvic floor and set back my progress. BUT! I’m getting better!

That is the first bit of amazing news.

The second bit of amazing news is that we received an anonymous card passed to us through our pastor this week. Inside was the money needed for one month’s worth of physio. So, um, we are pretty thankful to God and whoever gave us that money. And, um, I’m feeling pretty humbled and like I should really be addressing my anxiety over this issue. I can’t let my pelvic pain define my relationship, my identity or my frame of mind.

In other news, it seems like my vestibulitis may be pretty much cleared up. I haven’t had much trouble with superficial pain. Gradually, my body’s issues are getting cleared up. One at a time.

Workin’ it out

30 Aug

Yes, the last post was a downer. We’ve had a crazy few weeks here, and we are both processing. But there is progress! We are working on it.

I went to physio yesterday. It was really good. The physiotherapist specializes in pelvic issues and she was great. Finally I felt like someone was really paying attention to the specifics of my condition, not just giving me a blanket diagnosis with general advice. She spent the whole hour doing diagnostic work: asking lots of questions, poking and prodding me, observing my posture and movements, doing stretches. I will admit that I was pretty sore afterward. She was able to pinpoint a handful of areas that are carrying extreme tension – mainly my quads, inner hips and various parts of my pelvic floor. I have a 1/2 hour session scheduled for tomorrow where she will begin teaching me some exercises to target the problem areas. I am feeling great about this clinic and really optimistic about my chances of making progress in this course of treatment!

But.

There is always a but, isn’t there?

It’s expensive. And after tomorrow (literally – tomorrow is the last day!) we won’t have any health coverage. Well, actually we will have a teeny tiny bit but it won’t cover these treatments (or much of anything, to be honest). I am so grateful to live in a country that has universal health care, however there are some things that we have to pay out of pocket for, and this is one of them. My husband is underemployed right now and I am going back to school in 2 weeks! So, the timing sucks. We are going to have to think hard about what to do. The physiotherapist suggests I go once a week but says I could go every second week and still see some benefit. Basically, if I go any less frequently than that, there is not much point since whatever progress has been made will be lost before the next treatment. Laaame. I really don’t know what to do. We are honestly barely making ends meet right now. On the other hand, this is about my health and the health of our marriage – both worth prioritizing. We have some praying and thinking and talking to do, I guess.

Ahh!

.

25 Aug

My husband just walked out the door, feeling frustrated and upset because our sex life sucks.

I feel it too.

I know he’s coming back. I’m just angry that this is even happening.

So, I’m not pregnant.

15 Aug

Back to the gyno today.  Got some answers.  And some new questions.

As far as the vestibulitis goes, doc didn’t have much to say.  Basically she thinks the lidocaine and dilation is working, I should keep doing it, blah blah blah.  Okay, thanks for making me wait 4.5 months to hear THAT.  The gist of it is that she doesn’t have any ideas to further my progress other than to keep doing what I’m doing.  She gave me a referral to a physiotherapist who might be able to help with some stretching and muscle exercises.  Unfortunately, I have only the teeniest tiniest health coverage right now, and no money for physio treatments.  So.  That sucks.

I’m going to do some research and figure out exactly what (if anything) will be covered by my health plan.  I’m not holding out too much hope, but you never know, right?  Spouse and I have decided to book at least an initial appointment, and see what the physiotherapist says.  After that we can gauge whether it will be helpful and whether we can somehow make it work financially.  It’s hard for me to see how that would be possible, but miracles happen.  In the mean time… I don’t know.  Things have been better in the sense that we have been able to ACTUALLY DO THE SEX THING once in a while, but “sexy” it is not.  At least not for me.  Because all those orgasmic moans are actually just coping mechanisms to increase my pain tolerance.  Hot, right?

As far as PCOS goes, I got my test results, a new prescription, etc., etc., but THAT’s a post in itself!

 

Keep on rocking your sexual dysfunction, honeys.

lidocaine 101

5 Jun

In response to a question from Emily in the comments, I am going to sum up my vulvar vestibulitis treatment program from my diagnosis at the end of 2010 to now.  Here it is:

Step One:

I started treating with lidocaine as soon as I was diagnosed, on the recommendation of my gynaecologist.   The type of lidocaine I use is Xylocaine 2% jelly, and it comes in a little tube from the pharmacist (no prescription needed, but they keep it behind the counter) for about 15 bucks.  I find I go through a tube about every month or three weeks.  For the first three months after my diagnosis, I applied lidocaine twice daily.  In the morning after showering, I used a dime-sized glob on my finger and tried to press it into the vestibule area.  This was difficult at first, and I really didn’t know if I was doing it correctly.  I would try to press the area with my finger and stretch it out for a few seconds.  I have heard of some people leaving the lidocaine on for half an hour and then washing it off, but my GYN didn’t suggest that, so I just apply it and leave it on for the day.  At night before bed (and AFTER using the toilet!!!) I squeezed another dime-sized blob of lidocaine onto a cotton ball and inserted the cotton ball halfway into my vagina.  This stays in all night.  After three months of this morning/night application, I went back for a check up and my doctor found that my sensitivity had DRASTICALLY decreased.  In my initial appointment, she had gently poked the vestibule with a Q-tip and I gasped in pain, but after three months of lidocaine treatment, I felt only a dull discomfort.  I should also mention that during this time I did not attempt intercourse AT ALL and only had finger penetration a few times (with varying degrees of discomfort).

Step Two:

After the initial success of the lidocaine, my doctor decided it was time for me to start dilation.  I continued with the morning/night lidocaine routine, and added in ten minutes of dilation per day.  The dilator was purchased from the gynaecology practice for $15, and is about an inch in diameter.  To dilate, I applied a larger amount of lidocaine to my vaginal opening, waited ten or fifteen minutes for it to ‘kick in’ and then inserted the dilator (with lubricant).  At first, this was a little painful, but my body adjusted to it fairly quickly and I was able to practice moving it in and out of my vagina or moving it subtly from side to side to stretch things out a bit more.  At this point, I was feeling very motivated and I decided to try to dilate twice a day.  After a few weeks of this, the discomfort was gone, and I decided I needed something larger to dilate with.  My gynaecologist had told me that the ‘next step’ would be to use something “penis-sized.”  The difference between my partner’s size and the dilator was pretty substantial, though, so that wasn’t really going to work for me.

Step Three:

I tried penetration with my partner, and we were only able to get his penis in a couple of inches before it was too painful, so I knew I needed to dilate more.  My GYN had recommended going to a sex shop and buying a dildo, so we went out and picked something that seemed to be in between the size of my first dilator and my husband’s penis.  I have been dilating with this for a little while now, using the same technique as before, but I have to admit that it is much more painful than the first dilator had been.  I have been able to insert it fairly comfortably if I stimulate my clitoris at the same time, but I have to go very slowly in order to avoid pain.  I will admit that since this is more painful and requires more ‘work’ than the first dilator I have not been as faithful in doing it every day, but writing the post is making me realize I need to maintain my treatment schedule to see results!  I have also been able to have limited success with actually having intercourse or at least getting my husband’s penis fully inside me.  So far, I have approached intercourse by applying a generous quantity of lidocaine, then using the dilator for a few minutes to prepare my body for penetration.  I will masturbate to the point of orgasm, and then remove the dilator and attempt intercourse.  It is painful still.  I can feel three types of discomfort: the feeling of stretching that is aided by dilation; the pain of pressure on the vestibule as my husband moves in and out; and a fairly intense pain that seems to be in the cervix area and only happens when he is thrusting in more deeply.  I am hoping that by continuing with the lidocaine and dilation, I will soon not only be able to have reduced pain, but will also be able to move more freely and use different positions that will also help eliminate discomfort.

And now my question to you, my lovely ladies: What positions or techniques have worked for you in reducing your pain during intercourse?  I need your suggestions to try to make this work.  Please don’t be shy in providing more graphic details – you can always comment anonymously.  It is very helpful to know the specific mechanics of these things, as I find even a very slight shift of position can make the difference between something being reasonably comfortable or incredibly painful.