I hurt. Horribly. Sometimes the pain is limited to small areas of my pelvic floor. Or it’s referred pain all over my body. The sensation can be sharp, heavy or tight. Sometimes it’s hard to breathe, and I can’t tell if it’s the pain taking my breath away or the anxiety the pain brings on. It’s difficult to tell those two apart since our fight or flight system creates a cycle of pain that’s hard to break once it gets going.
I’ve previously suffered from chronic pelvic pain, and following four years of living pain-free, it has reared its ugly head again since the beginning of this year. I’ve been poked and prodded, sent on a five-hour late night odyssey to the ER as a precautionary waste of time and money, and improperly diagnosed and medicated. Don’t get me started on how much it sucks when doctors won’t admit that they don’t know something. It’s OK not to know! Admitting you don’t know is the first step to actually helping your patient!
One thing I know with certainty is that I’m so tired of mommying in pain.
I’m teetering on heartbreak from telling my kids “No we can’t blahblahblah, because I don’t feel good. Your sitter or Daddy can do that with you.” I’m frustrated that on the worst days routine things like a diaper change or cleaning up a spill leave me hurting and thinking, “I can’t do this anymore!” I still do it again the next day because without my kids, on days of severe pain, I’d have no will to get out of bed. And since one of the things that actually helps pelvic pain is moving, getting out of bed is a must.
I’m used to being in pain while trying to live a normal life. I started the birth control pill around age 11, which helped, but each month, the pain and exhaustion I felt with my period caused me to take one giant leap back for feminism because I would think, “With my period practically putting me out of commission one week a month, I could never be POTUS.”
Of course that wasn’t true: even in unbelievable pain, I still acted in high school plays, studied for college exams, and stayed late at work putting the final edits on the magazine due at the printer. Now I’m a stay at home mom to two under age 3.5, which is like being the president of my own little country, replete with mini-dictators and tantrums of filibuster proportion!
In 2008, years before I was elected President Mommy, I had a severe injury to my pelvic floor that caused life-halting pain and took a lot of will and determination to figure out and fix. That pain was misdiagnosed a dozen times, including being treated with Lupron (premature menopause is awful!) for endometriosis (which I do have). I finally got the proper diagnosis on the phone during a consult with a specialist I found online via a research paper she wrote. I’ll never forget that OB’s words, “Get off Lupron. Your endometriosis is a red herring for pelvic floor dysfunction. Here’s what we can do to fix it: pelvic floor physical therapy and the correct medicines to help break the pain cycle.”
With PT, meds, strength training and yoga (before I birthed two big babies, I had killer abs and could do a yoga headstand!), I got well and lived pain-free, until I woke up on January 4, 2016 with a familiar pain.
For the first few weeks of this year, I lived in denial, hoping the pain would go away, that it was just a fluke. It didn’t, and then it got worse. My old pain was back. I once again turned to the long distance OB who originally diagnosed my pelvic floor dysfunction, and who now has an impressive job at the American College of Obstetrics and Gynecologists.
Leading up to January 4th, my periods had been coming quite frequently, sometimes just two weeks apart and were painful and long. The OB explained that because I’m breastfeeding, it’s likely I’m not ovulating often. While my body is making enough estrogen for the uterine lining to grow, it’s not enough to release an egg, which has caused a buildup of lining. The lengthy periods with heavy clots triggered my latent injury.
In the past two weeks, I’ve bid a bittersweet adieu to the local OB who delivered my kids and moved to one who truly gets my troubles. I’ve switched to a stronger birth control pill and will take it continuously as I never need to get another period. I’ve started experimenting with prescription medicines that can help break the pain cycle (thankfully I can still breastfeed on them), but that hopefully won’t make me too foggy to be a present parent. I’ve also resumed pelvic PT.
Lemme tell you, effective though it may be, pelvic PT (yes, PT that is performed inside of you, as well as external myofascial release) deserves its own circle of hell. Ouch!
I quickly fired my PT when I realized she wasn’t doing a good job, then flew to Illinois to revisit one of the best pelvic PTs in the country. She easily assessed what’s going on inside of me and what my new local PT can do to fix it.
My long distance OB and PT are my heroes. Their depth of knowledge and compassion has been a high point this year. During my trip to Illinois, my husband cared for our daughters without a glitch or tear, and my heart swells knowing how much love they share.
While I’d prefer to focus on the highs, there are many more lows of parenting in pain … I lose patience quickly. Our lives feel out of control. We added hours onto my preschooler’s school day to help me out, but I miss her. Being a sick mom triggers bad memories from my teen years when my mom was dying of cancer. But, though the severity of pelvic pain has been compared to cancer pain, I am not dying and oh my, do I have a lot to live for.
This brought me near tears. Thank you for being so open about this, and so brave in your own journey.
Thanks much, Liz.
Great article! Parenting with a chronic illness is parenting on hard mode, for sure! Also, I sent you a Facebook message inquiry.
Thank you, Karen! I messaged you back with lots of info.
I’m so sorry you’re having to deal with this again. I think I underestimated your struggles this year. I hope you are on the path to complete healing now. Sending you lots of soothing energy and love. (And, hey, I recognize that photo! 🙂
I’m on the path…it’s bendy, swervy, hard, but I’ll get to the light. Thank you. I love that photo, and you!