Sunday, May 24, 2015

The Victim or The Advocate

I'm approaching the two year mark since I stumbled down the rabbit hole into the bizarre world of post sterilization struggles. So of course, this has me thinking a lot about the physical experience, the mental and emotional experience, and the large amount of people I have met as I've traveled down this "path".

When the lightbulb initially turns on for us and we realize what's been happening in our bodies after sterilization, the "discovery phase", there's a lot of emotions to chew on. Personally, I felt a lot of anger toward myself for having made such a huge decision without a single bit of personal research beforehand (very uncharacteristic of me). Some women feel angry with spouses or family members who pressured them or led them to feel obligated into the procedure. Some feel angry with their doctors for various reasons. And once you connect with other women experiencing similar things, you are met with a sense of relief that comes simply from knowing you're not alone. These things are normal. And then you begin connecting with these women, asking questions, and searching high and low for a solution to attempt to feel like yourself again.

But what happens if you aren't able to find a solution? Or what happens if you do find one and you begin to recover?

I watch a lot of women come and go in the online support groups. It's fine, they are there when they need encouragement from the rest of us, this is our main purpose in these groups. But if we remain in this mode, simply sifting through information to figure out if reversal or tube removal or hysterectomy is best for our personal situation, only connecting when we're feeling weary, we're camping out in victim mode. We are all victims of partially or completely uninformed consent, and it's hard to shake the feelings that come with that.

Not very long after I figured out I was experiencing post tubal ligation syndrome, I changed my direction. I was fuming at myself internally at first. But then I thought about the larger scale. That's when I started to get mad not at me, not for me, but at the fact that this has been going on for so long with so many women and the best study any doctor can cite to me to "disprove" our experiences is from 1978. I felt a fire in me that made me want to start talking, despite the embarrassment it may cause some. And I've been talking about it for almost 2 years, to anyone who will listen, despite occasionally being met with heavy skepticism.

I had my reversal 8 weeks ago, I am feeling incredible physically, but I am still on fire. I am still talking. I am still researching, watching, supporting. I am not only a victim. I'm an advocate. I am on a mission to inform women of the actual risks, to hold the hands of those who weren't informed, and to keep pushing for a change. Until our doctors are willing and able to give full information prior to consent, it's our job. It's yours, its mine. We are the current line of defense, as small as we may be.

When I first opened up on my personal facebook about what was going on with me after sterilization, I received a couple private messages from female friends I'd known for a few years. Both telling me their painful experiences with sterilization, and how they had thought about warning me, but figured I'd be okay, and how they felt guilty now knowing I wasn't. I didn't and still don't hold it against them at all. But this is why I am an advocate. I will come to your door and knock until you open and I will tell you what I know so that you can make your decision knowing the possible side effects, because that is all I hope for. Not for it to be illegal, not for women everywhere to not have the option, but to "know before you go" so to speak. That is my heart in all of this.

So if you're reading this, I challenge you to take a little introspective time and decide what you want to be. Are you a victim of partially informed consent, or are you an advocate for health?

Saturday, May 2, 2015

My Experience with Tubal Reversal and the Impact on Post Tubal LigationSyndrome Symptoms

I woke up at 4 AM on March 23rd, well before my alarm. Butterflies in my stomach. Everyone still sound asleep. Checked and rechecked my bags. I went through the motions of heading to the airport without much thought; my husband drove and I babbled the whole hour about anything and everything. It wasn't til he had to leave me at the security check line and head back home that it really hit me that I was on my way. Surgery was finally coming, after feeling like it was eternally months away. 

I flew to Los Angeles from Portland. Then to Dallas, and from there to a small airport in McAllen, Texas. I flowed through each connection with minimal anxiety. There was a peace over everything, and it felt like I was going exactly where I was meant to.  

My reversal was performed the next day, March 24th 2015. It felt like a whirlwind. Multiple doctors, nurses, swirling about and working in synchronized fluidity. Their voices calm, their words kind, and their determination evident after finding things a little worse off in there than my operative reports let on. 

I'm about 5 weeks post surgery now, if my math is correct but admittedly, numbers aren't my strong suit. 

I will go ahead and put this out there before I articulate my personal experience with tubal reversal as a remedy for PTLS; not every woman will find relief through reversal. There are so many variables at play that there's no knowing 100% if it's the answer for you or not. It's very much a gamble, one you need to weigh for yourself. For me, this made the most sense to try before the other more drastic options and we were willing to spend the money even knowing it may not change anything. 

At 5 weeks (and one cycle already), these are the symptoms I am officially able to say are gone for me:
  • Unexpected tears and mood swings
  • Night sweats
  • Abnormal periods, longer cycles,  heavier periods. 
  • Pelvic pain (This has been a huge deal for me. 20 months of daily pelvic pressure and pain were gone overnight.)
  • Bleeding after intercourse
  • Severe ovulation pain
  • Increased bleeding in gums
  • Loss of balance, light-headedness, and dizziness
  • Hair loss and thinning in head (there are baby hairs along the front of my hairline where the lost hair is regrowing, I couldn't believe it when I noticed it two weeks ago)
  • Unexpected attacks of bloat
  • Tenderness of breast (this was a daily thing after tubal ligation, stopped happening about 9 days after reversal)
  • Sore joints, aching, tendons and muscles
  • Mental confusion, lack of concentration, feeling "in a fog". 
  • Abnormally high anxiety 

  • I do not believe this is all coincidence. These things that impacted my daily life for close to two years dissipating within weeks of reversal leads me to feel even more strongly that we need to push for true informed consent for women considering sterilization. My quality of living suffered greatly. I can't get back those 20 months. Women who live with it way longer than that cannot reclaim that time either. When we have doctors telling people that Post Vasectomy Pain Syndrome is "a thing" and exists and that they'll treat it for them, and turn around to tell women that there's absolutely no chance sterilization can hurt a woman, there is a serious damn problem. 

    I'm not done with this issue. I'm still on fire over it. I'm still holding the hands of the women I've met still stuck in it. I'm still talking loud and spreading the word every way I can manage. I'm healing physically, but I will never be the same.