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. 
  • Sunday, January 25, 2015

    This one's for the guys.

    My husband approached me a few nights ago, asking if he could contribute his thoughts on PTLS to my blog. I figured it'd be a decent opportunity, to get a man's written perspective on what he's seen from the sidelines, because it seems many women have a significant other struggling to believe there's a problem at all.

    I won't tie this post up with my babble much more. This is from my husband, Michael. Ladies, please share with the man in your life. Whether he doesn't believe you, or is pushing you to have this done but haven't yet, or whatever. Let's call these guys to stand up and be real men in the face of this issue.

    [I don't have ovaries.

    Icebreaker I know. I have no idea how it feels to be a woman. I've learned a lot through listening to my wife, and sometimes not listening and her pointing it out. I don't know how it feels to have your period, raging cramps and all the lovely thing that come with that.

    I've know my wife for nearly 10 years. Her periods were mild, mood swings occasionally, some bleeding. "Mild" is the best word to describe it all. I know her and I trust that she knows her body. The confidence she got after educating herself and having 4 children, the last at home with no meds, she knew her body and how it worked, and she had a high pain threshold.

    We went through a very hard year when our daughter Maddy was conceived, and Emily decided she wanted to get a tubal-ligation. I wasn't keen on the idea, it just didn't sit right with me. The way things were after having 4 kids and the worst year of our lives, I knew I couldn't "stop her" if I tried, but I let her know she didn't have to. She felt external pressure that this was the answer. Even her doctor was hesitant that at 23, she was getting sterilized.

    Even while in the 3rd trimester Emily had energy, could somehow keep up with the kids despite the stress of not having our own home at the time, and she was not in constant and sometimes crippling pain. She was able to go all day, despite everything life had thrown at her.

    After a dramatic few weeks in the hospital for preterm labor, our beautiful bundle of joy, Madelyn  was born by Cesarean and the doctor tied Emily's tubes before sewing her up. 6 weeks or so after she started having horrible pain. After going through pregnancy, birth and delivery 4 times before we both expected her to bounce back and keep going with life. But as time went on she didn't.

    I hate watching her suffer in pain I can't do anything about. I do what I can to help make her comfortable, but pain-wise nothing helps. Seems like every month we find a new health problem that's cropped up that comes with estrogen dominance, a condition she "just happened" to get after the tubal. A doctor even suggested that my now 25 year-old wife is just "getting older." Even going through tests for cancer, there was a slight hope that maybe something'd turn up that was treatable. There seems to be an educated blindness when it comes to even the possibility that messing with your reproductive system, the hub of hormone control, might affect your body. Apparently my wife is not the only woman this has affected, which is part of why I'm writing this.

    Husbands, this woman is your wife. Can you trust her that she knows her own body? Trust her that when she says she's in pain, it's real. If having no more children is imperative, then why are you not willing to sterilize yourself? It's a much cheaper and easier procedure. Whatever reservations you feel against getting snipped yourself, is she not allowed to feel them for herself as well? If you want to be a man and lead, if you absolutely do not want anymore children, then why not lead and get snipped yourself?

    Not trying to sound conspiratorial, but the doctors are financially incentivized to sterilize women, and over time scalding, and eventually removing the uterus. Lots of money for them, lots of pain for her. Honestly these doctors do not "care" about your wives, not like you do. They may be willingly ignorant, or straight up unfeeling jackasses that only care about money. For whatever reason, the medical industry ignores the growing amount of women with these problems. It's your job to protect her. Not pressure her into having someone slowly carve away her reproductive organs like she's a piece of meat.

    I hear more and more stories of men pressuring their wives to get the surgery, then leaving them after they do. I only say men because I don't know what else to call them. Don't be that guy. Help your wife with what you may have asked her to do. She needs you on her side, because most of these doctors aren't.

    Signed, A Husband Who Wished He Could Have Done More.]