use your common sense
and don’t be afraid to trust your instincts.
-Fred L. Turner
Yesterday I sought a second opinion in an OBGYN. I haven’t shared much on my blog, but close friends know how I’ve been struggling with ovarian cysts rupturing since last June. Six of them, to be exact. My current OB, the one I’ve seen since I was 15, continued to dismiss my concerns about all of these rupturing, assuring me that it was within normal range and nothing was terribly wrong, despite the numerous questions I had for her. Since June I have had 4 ultrasounds to measure the growth of the cysts, and as soon as I was told I was “in the clear”, I would find myself in excruciating pain with, yet another, rupture. I’m told that people have different pain experiences with cysts. Most of mine were unbearable, and had me doubled over with stabbing pains in my side. (I always considered my pain threshold to be pretty low, but after childbirth and being able to wait for the epidural until I was almost 7 cm, I’m told my tolerance is more than I think it is.) When the first cyst ruptured back in June I had NO idea what was happening to me. I waited 2 days to go to the doctor, then at that point was told to go to the ER. The last one that ruptured in February was the worst I’d experienced. I spent 2 days straight in bed and I had to continually take my pain meds as soon as they wore off. When I wasn’t knocked out from pain meds I was bent over the toilet throwing up, a symptom I hadn’t I had yet had with any of them prior. I’m told extreme nausea is a symptom, but doesn’t happen to everyone.
Friends have told me for months that I should seek a second opinion, assuring me that none of this is normal. I knew they were right, but I really thought I should trust the professional who I’d known for 16 years. Surely she would’ve seen something on a test she’d already performed. During a blood draw she discovered my white blood cell count to be “astronomically high”, as she put it. But she determined I must have had a bladder infection, and placed me on antibiotics. I saw her again a few months later to check the growth of my cysts and she checked my white blood cell count again, only to find it elevated once more. Again, she placed me on antibiotics saying it was another infection. Admittedly, this was all a little unsettling for me. I just felt like something wasn’t right, but I just wanted to trust her. The one who delivered my child, and saw me through a traumatic post-delivery surgery. I questioned her so much, but each time she reassured me. She has a degree-she’s a DOCTOR. She must know what she’s talking about.
After months of my friends begging me to find an answer, I made an appointment to get a second opinion. I asked around, looking for the perfect recommendation, and one name kept coming up, so I made an appointment.
I saw her yesterday.
I’m kind of a high anxiety person to begin with. I don’t particularly like new places. They make me uncomfortable. I didn’t like the idea of driving and walking into a place where I didn’t even know what the interior looked like. Or the staff. Or the doctor. Or the equipment. And to top it all off, I just didn’t know what she was going to say about what was going on with me. If anything.
I had mentally prepared myself for news. I just knew she was going to tell me something was up. Even still, there’s hope. Hope that your instincts were just hints of nervousness, and that you were reading too much into what was going on with you. May be this was all within normal range.
In 4th grade I had a crush on Stephen Spears. He was cute, funny, and smart. He even had a mullet. (What was I thinking?) One day I wrote a note to him asking him to check the “Yes” or “No” where I scribbled “Do you like me?” The note was passed through the class, across the rows, and over to him. I nervously scanned his face for some indication of an answer. He marked a circle somewhere on the paper, and the folded paper made its route back to my desk. I was preparing myself for a circle around “No”. Because, preparing for the bad is what gets you through the waiting. No matter the outcome, the news seems like it will be easier to take if you prepare for bad news, then the surprise of better makes it all the more sweeter. You’ll briefly wonder if you’ve psyched yourself out.
I thought I just knew that square paper was going to scream “No” at me. He never really seemed to notice me. Well, there was that time in the lunchroom when he was sitting across from me, and my friend made some silly remark just as I was taking a sip of milk from my chocolate milk carton. My laughter ,unfortunately, came out in the form of milk spewing from my mouth and nose. I think he noticed me then, as droplets of chocolate clung to his face and curly black hair.
Here comes the letter. Here comes your 4th grade heart folded into a tiny square that fits in the palm of your hand. You wait until the teacher faces the blackboard again. You anticipate it. Time slows until the white paper slides open in your fingers.
Within 3 minutes of being with my new doctor she told me more than I’d been able to gather in the past year from my previous doctor. The ultrasound, which she was overseeing herself, revealed an endometrioma, a localized form of endometriosis in my ovary.
This was the news I anticipated. This is what I was holding my breath for. This is what I had a feeling I was going to hear, but I was hoping for that surprise. For my “YES”, I like you, too–and you’ve totally psyched yourself out. This was my white slip of paper sliding across my desk. I exhaled with a hint of relief. Relief for having an answer, but trepidation for what was to come. She sat me down and we talked. She spent so much time with me. There was care in her eyes and a genuine kindness that you just really don’t find in doctors these days.
Endometriosis affects about 5 million women in America each year. It also runs in my family.
She talked with me about next steps and the future.She had extensively reviewed my chart before I came in and was even prepared to speak to me about my emergency surgery after my delivery with Blake.
She never looked at her watch. She explained everything fully, and even drew out a picture for me to explain what was going on. She also spoke to my nerdy teacher heart by personifying my ovaries and fallopian tubes, reenacting what they may be saying about this silly endometriosis attacking them. I appreciated her humor in all of this and decided I was definitely switching OBGYN’s, effective immediately.
A lot came out of our conversation. Not all of which I completely understand, but I’m trying. I’m having surgery in June to remove the endometriosis. This will also be an exploratory surgery to see how far it’s spread. I’m hoping it’s very localized. The endometrium is what has been causing all of my cysts. She found that I have one currently on the right side that has not yet ruptured, but it’s fairly large. I am only praying that I can make it until June without it rupturing because I just can’t take anymore! She ended our conversation by delicately saying that if Michael and I want to have any more children then we need to make the decision now, because after the surgery (and with high hopes that it isn’t spread everywhere), she is giving us a 6 month window to not only decide if we want to have anymore kids, but also to get pregnant. After the endometrium is removed, it will inevitably grow back aggressively, and the only thing to prevent it from growing is birth control or pregnancy. Come December, she will do more tests to see if it’s spread again and I am being placed on 2 forms of birth control to keep it at bay until menopause. And depending how things go during surgery and during that 6 month window, she may need to send me into menopause earlier than natural occurrence.
My heart sank when I heard this news and I had to fight back tears and continue to intently listen.
Michael and I have been on the fence about having another child. We go back and forth on the issue. Usually the answer is that we’ll most likely just stay a family of 3. I’ve been okay with that decision because it was our decision. A personal choice. All along knowing that our options were, of course, open. That if we changed our minds 2-3 years down the road, we could do that. Everything changed yesterday and now the decision has been stripped from me. My white slip of paper no longer contains the hope I was looking for. It doesn’t even feel like a simple “No”. It’s like someone has taken my parchment and crumpled it, ripped it, stomped on it, and thrown it away.
As soon as I got into my car I just couldn’t hold back the tears anymore. They streamed down my face, and I had to compose myself enough just to crank up the car and drive home.
We have only a short window to decide this, and it isn’t something to be taken lightly. Neither of us are really ready to have another one at this moment, but that doesn’t mean things wouldn’t change in the future. Now, they can’t.
There’s been a level of confidence that has come with me responding to people about having a second child. I was able to answer assuredly with a “we’re not sure”, up until yesterday. Now, I don’t feel so confident talking about it. Because it isn’t my choice anymore. The choice is sandwiched between this tiny window of time that I’ve been given.
I was shopping with a friend today and we ran into another friend of hers. The three of us spent some time talking, about life. The conversation turned to kids. She was talking about how more laxidasical you get once you have your second child. She said that I would learn this when I had my second kid. I just giggled and went along with her. But I wasn’t giggling on the inside. There was this pang inside that cut deep. A month ago, no, even a week ago I probably would’ve offered up “Well, we aren’t sure about a second one”. Funny how things change when you suddenly want what you can’t have.
I guess you can’t have your cake and eat it, too.
My life isn’t over. It isn’t cancer. I’m not going to die.
This may not seem like a big deal to some because, yes, I already have one kid, but it’s really hit me hard.
People across the world suffer from this. MILLIONS. I’m sure many of my friends do and I don’t even know about it. I know I should look at the bright side. I still have that 6 month window if we decide. And there are many success stories of people still having children with endometriosis (though it’s my understanding viable pregnancies are difficult). Also, I have a wonderful and miraculous 2 year old sweet boy! I am not discounting that.
I don’t know what I was expecting when I walked into the office yesterday. I was expecting an answer. I prepared for that. But I guess I didn’t prepare for anything beyond that.
I’m a little frustrated with my prior OBGYN for not thinking that any of what I was experiencing was a big deal. I don’t understand how she could just sweep it all under the rug like it was nothing.
No use mulling over it.
Endometriosis is a chronic disease. An earlier diagnoses wouldn’t have changed that.
I am keeping my eyes on God through all of this. I am trying not to be so down about it. I am trying to stay focused on all the beauty and blessings in my life. There are plenty!
It’s not the Endo the world, after all.
(Oh that was bad…)
I can’t tell you what Stephen’s reply to my question was that day. The teacher caught us passing notes and snatched it up before I could read it. I never got the nerve to ask him again. I was too nervous I’d get caught. I was the good and quiet kid in class and the idea that I would get into any trouble was frightening.
I’m glad to have a diagnosis. Though I kinda wish, like my love note, that now I didn’t know. I wish someone could’ve whisked me away before I heard any news, just like my teacher whisking my note away. This time someone made it to the blackboard without being able to rescue me from an answer.
All these years later, and I’m staring at a Check Yes or No again. And I wish I didn’t know. Can I go back to pretending I have a choice in this? That I have a say-so, and that we can change our mind as much as we want, far extending our 6 month deadline?
My piece of paper says No.
I know all the talk about wishing I didn’t know sounds silly. After all, I wanted answers. I knew there was an answer. And steps have to be taken now, but it’s a dreamy thought, to be taken away and rescued before bad news, as long as there are no implications or consequences, of course.
A sweet friend gave me a needed reminder last night. I thought I was in control and now it seems like I’ve lost it. When, in reality, God has been the one in control the whole time. She was so right.
My heart is still broken over it.
I say it all the time about being a mom. That there are some things you just know, and you absolutely have to advocate for your child. Mommy instincts do exist. But even if you aren’t a mom, you still have an instinct. You need to trust it. If you think something isn’t right with your body, believe in how you feel.
Do I question this?
Is it worth my time to find an answer that may not exist?
Check YES, You are worth it.
EDIT: after writing this blog so much happened! Many people reached out to me privately saying they’d had the same issues. I did, a few months after this was written, have surgery to remove the endometriosis but they found it had spread far more than they anticipated, and not only do I have endometriosis, but also adenomyosis. Now, I am unable to have any more children at all. I will require surgery again in a few years to try to rid of some of it, though it’s impossible to get rid of all of it. Ultimately, this will result in a partial or full hysterectomy.
Life is full of unexpected challenges and surprises, good and bad. If you are struggling with either of these diseases, I would love to talk to you and tell you how I’ve come through this journey.