Tuesday, March 1, 2016

Endometriosis : 6 Months Later.


It's been about six months since I last wrote about endometriosis.

I haven't been purposely avoiding the subject of endo - not entirely, anyway. But as we begin another Endometriosis Awareness Month I find myself holding a yellow ribbon between my fingers, sitting in front of my computer, really marveling at what a different year this is than last and feeling like I need to write about it. Even if it's a little bit hard to.

To be completely honest, the main reason I haven't written about endo in a while is because it is a much, MUCH smaller part of my life than it used to be. I went from living a life revolving around my illness and it's restrictions to getting into my bed one night and realizing that I hadn't taken any medication that day. I hadn't needed to. I felt well. Now, there are many days that I don't think about endometriosis. This is something that actually makes me feel really guilty to admit because when I was in the deepest parts of my battle, I swore that I wouldn't ever let a second go by where I didn't think about that pain and suffering. But I can't put into words how much weight is lifted off my shoulders when I can go a day without a thought of what I went through. It's like getting a mental vacation after 12 years in an emotional, physical, and psychological war… but I'm getting ahead of myself.

Recovery from surgery was a very long process, as I was told it would be. They said I would make gradual progress for about four to six months and then I'd really notice a difference. It could take up to one year for my body to fully heal. Sitting here now, I can tell you I must be a textbook case because right around the six month mark I started seeing huge, positive changes in my body after months of worrying that I wasn't any better off post-surgery.

For those months, I wasn't talking about my endo because my situation felt like a very anticlimactic ending to what was supposed to be this great success story. Months after coming home, I was still having daily aches, exhaustion, and pain. Even when I knew most of the surgical stuff was still healing, this felt like a horrible betrayal from my body. 

I had publicly shared my experiences with being constantly ill, in and out of the hospital, getting accepted by an amazing organization to have surgery performed by one of the nation's best doctors, traveling across the country, waking up from surgery without pain….. but then going right back to the way things were before? I felt embarrassed. I didn't want to share that I was still struggling and have anyone thinking, "Ugh, here we go again. Thought we were finally done hearing about all that!" or even worse, having girls who were encouraged or inspired by my story hearing that I was still hurting and feeling like they would be defeated by endo too. I shared a little bit about this on my @end_oh instagram account and the women there were incredibly supportive and kind. Many of them offered encouragement saying the same thing happened to them and to stay strong. At a time when I had been avoiding the endo community it reminded me of how crucial that connection with other girls is during challenging times. Just love my endosisters!

Pain-free days started peeking through around November. In between the tough ones I'd get these awesome days where nothing hurt and I'd think "Okay, this is it!" But somehow they never lasted very long. Towards the end of November right around our wedding, God blessed me with some pain free weeks. Our wedding, honeymoon, and reception were perfect and I was so relieved not to have endometriosis tainting those moments for me.

In December, I stopped taking daily medication. No more painkillers, no more ibuprofen, no more hormones - nothing but vitamins. The good days continued to become more and more frequent and the bad days slowly faded out of the picture. 

In January I had my first really bad flare up since the surgery. But after just three days in bed taking painkillers, I was able to go back to work and within a week it was over and the pain vanished completely. I couldn't believe it. I had always had flare ups that lasted at least a week and then continued to ache for weeks afterward. I had been so frustrated to be in such pain when it started but by the end I was excited and encouraged to see how quickly it had passed.

Life went on as usual until this past Sunday night when another flare up seemingly started. Weston and I prepared for it to get really bad… but after only a few wake-ups throughout the night, it was still relatively under control when I woke up. So I went to work. I came home a little early feeling sore and crampy, took an epsom salt bath and rested. Today, I woke up crampy and achy… but I made it through another short work day! In the years before my surgery, my pain would hit a 10 on the pain scale where as this flare seems to be peaking at a 6 or a 7. It may not sound like much, but this progress is enough to bring tears to my eyes. I'm in pain but I'm walking around, driving, continuing with my responsibilities and then resting as much as I can. I'm functional.

Weston and I keep high-fiving and saying how each time has got to just get better and better. He is so excited for me and I'M so excited that he's not having to be up throughout the night with me, fetching medicine and all that. It hurts, but it's under control. That's the best way I can describe it.

Now that I'm on the other side of things and not consumed by ongoing pain, a big part of me wants to forget all about endometriosis. 

I want to completely block out every horrible memory. The times I hid and cried in public because the pain got so severe. The times I had to be sent home from work because I couldn't even stand up straight. The times I swore at the top of my lungs while my mom or Weston raced me to the ER. The nurses who patronized me. The doctors who misdiagnosed me. The years I spent seeing multiple specialists, trying every treatment possible, reading every book. The pill bottles that covered my dresser. My mom giving me injections at home. Avoiding gluten, soy, corn, dairy, potatoes, - seemingly every delicious thing. The times I wished I could just die so I wouldn't hurt anymore.


Those are awful memories. Those are times I really want to block out and erase. 
But if I erase them, I will never be as grateful for my life as it is now.

Driving my car. Getting through a day of work. A sun salutation in the yoga studio. Going out to dinner with friends. Riding my bike and not having to think about hurting the next day. Painting a room of our house. Making cookies. Dancing with my students…

Those would just be normal things if it weren't for the horrible experiences that came before them.
Instead, they're exceptional. And I wouldn't trade that perspective for anything.

So I'll keep the bad memories. They'll continue to push me to appreciate my life and my body and any bit of progress. They will also continue to light a fire under me to help other girls who are currently living in that awful situation and do whatever I can do help them out of it so that they'll be lucky enough to call those times "memories" like me.

If that's you, please tell me how I can help you : kelleoconnell@gmail.com

I'm so excited to keep healing and sharing what I know with others while I do.
Happy Endometriosis Awareness Month, my beautiful friends.
Let's keep talking about it.

11 comments:

  1. Thank you Kelle for sharing your experience. It's so nice to hear from you about endometriosis and that you are doing better. My situation is not as bad as yours used to be. But still, I might go trought another laparascopy this year, having my first one two years ago. Here in Montreal, Canada, we don't have any kind of these specialists you had the chance to meet. But I think it's really nice to know that somewhere, some doctors are doing their best to change endometriosis. I wish you a wonderful month of March! Best wished from Montreal!

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  2. It is really great to read your honest experience after surgery. I can't wait for your recovery to continue improving!

    For the comment from Montreal, we have one of the top endometriosis specialists located in Hamilton,Onatrio. His name is Dr. Nicholas Leyland. It is worth the trip if you are able to make it to Ontario!

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    Replies
    1. Thank you Alexandra! I'll take a look at it. Happy Endo month!

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