Imagine you’ve been praying for the souls of your future children since you were 14. You marry your high school sweetheart and you know you want a house full of kids.
And then you’re told you may never be a mother.
That’s what happened to me. And don’t worry, my story has a happy ending. But I had a long road to walk, often alone, carrying the burdens of emotional and physical pain. My hope is that this article will shine some light into life with endometriosis and infertility, and remind you that when it comes to getting pregnant… Well, it ain’t over till it’s over, sister.
I’ve always had severe period cramps and occasionally had to miss school or work because of them, but otherwise my teen and young adult years were no crappier than anyone else’s. I wasn’t sexually active and thus never was on any birth control. In fact, I didn’t first exhibit signs of endometriosis until I was in my late 20s.
I hit the gym after work when PMSing one day in March 2012. I had the brilliant idea to increase the weight on the ab machine, and felt some pretty severe cramps almost immediately.
Things went from bad to crazy bad really quick after that.
I tried to ignore the achiness and got on the elliptical. The cramping and lower abdominal pain was getting debilitating, and the agony was spreading to my back. I half-collapsed off the machine and practically crawled across the gym. I tried to stay calm, and for some reason didn’t want to flag anyone down for help. Maybe I just have to use the bathroom, I thought desperately. Or it’s food poisoning. I wanted privacy just in case that’s what it was.
The pain got to the point that I couldn’t stand up straight, and I didn’t know what to do. I was covered in sweat. I sat on the bench in the restroom, put cold water on my face, and prayed like crazy. Please God, I whispered over and over. Please.
I finally was able to leave the gym, and drive myself home. I drove below the speed limit – getting in and out of the car, and maneuvering my leg to work the pedals, was all mind-blowingly difficult. My husband rushed home from work to help me. I didn’t know what else to diagnose myself with, so I just assumed I’d hurt myself working out. After a day or two, it was like nothing had ever happened.
Or so I thought.
Fast forward a month. My usual cramps started up like they always do, and I took some OTC pain meds to help. But while those were still in my system, the pain became unbearable again. Other home remedies like hot and cold packs did nothing. No position was comfortable. It was pretty disconcerting until I realized “this is exactly what happened last month too.” My brain made some disturbing connections and horror washed over me. Something was wrong with me.
So in the middle of the night, hubby and I went to the Emergency Room. That appointment was absolutely horrific. I was there for four hours and endured multiple tests, blood draws and internal ultrasounds (that was super fun). The doctor was polite but cold; the tech who did my two hours of ultrasounds was kind but couldn’t tell me much about what she was seeing. They determined that my Fallopian tubes were blocked, and that I needed to see my OB/gyn right away.
Terrified, I called on Monday morning and prepared myself for what she would say. On the day of the appointment, my doctor came in and listened to my woes, looked over the hospital notes, and calmly said “yep, sounds like endometriosis. We’ll do a laparoscopy – no problem.”
This was unsettling for two reasons: one, it was disturbing to know that my situation wasn’t out of the ordinary according to her (because it sure as hell was to me!), and two, why were we immediately jumping to surgery as a solution? I couldn’t believe that there wasn’t a less invasive option. (As it turns out, in something like suspected endo, a laparoscopy usually IS the first option. During a laparoscopy, the doctor can see to assess the situation, as well as take care of it.)
Doc wanted to get the procedure done before my next period, so we set a date. I was leery of the unknown: what would she find? How many incisions would she have to make? Would I have to get more laparoscopies later? I had so many questions but wouldn’t find the answers until after I woke up from the procedure. That was the scariest part. And to think, a month or so ago I had no idea this had been growing in me for years.
At 5am on a dewy April morning in 2012, my husband and I drove silently to the hospital. He’d made me a playlist to calm me, so I listened to it while reading my morning prayers. I held it together until it was time for them to wheel me away from him. Then I cried frightened tears.
Unfortunately for me, Doc was right and wrong.
I did have endometriosis, though things weren’t as simple as she’d assumed. The endometrial cells had built spiderweb-like tissue around my uterus, ovaries and Fallopian tubes, distorting them. One of my ovaries was pulled all the way behind my uterus.
The cells were also within my Fallopian tubes (which are about the size of your pinky finger). Fallopian tubes are too fragile to operate on, so they tried a hysterosalpingogram (HSG) to “blow out” the endometrial cells using dye. It didn’t work.
When I woke up and saw the doctor, she showed me my two small incisions and spoke briefly to my husband and I about my recovery, then somberly told me that I was one of the three worst cases she’d ever seen. Of the other two women, one was able to have kids and one never was. She basically said “there’s nothing more I can do for you, here’s a referral for a fertility specialist. Good luck.”
I was devastated.
So add another step in the process to (maybe) have kids. What I thought was just bad period cramps, was really endometriosis. And that had now basically suspended me being able to get pregnant safely. Everything was on hold. I made the appointment for the initial consultation with dread in my heart.
My fertility specialist, Dr. Mehta, was amazing. It was like she immediately knew the anguish I was going through, mourning the souls of children I may never meet. (Later I learned that she’d been through infertility herself). She is the first one who actually said out loud, “It ain’t over til it’s over.” She was encouraging without being insincere or fake. She was brilliant, and calm, and ready to do whatever it took to help me. She was just what we needed.
We did blood tests. STD tests. Semen tests – of course hubby had superhero semen which made me feel worse about not being able to get pregnant. It really WAS my fault. We talked about options; Doc suggested that if we couldn’t get pregnant on our own, we’d go straight to In Vitro Fertilization. She felt that any other, more conservative options would probably not be successful.
Then, she had an idea.
She knew that I’d had an HSG done during my laparoscopy, and that it was unsuccessful in clearing out my tubes. (Basically, either semen wouldn’t make it up to the tubes, or a fertilized egg wouldn’t make it down to the uterus to implant. The egg would then grow in the tube, called an ectopic pregnancy. These are extremely dangerous and, while they’ll never be a viable pregnancy, their growth will eventually make the Fallopian tube pop. Moms can die from internal bleeding this way.)
Dr. Mehta wanted to try doing another HSG, just to see if a second attempt would be enough to clear my tubes. Usually the process is done with anesthesia since it is extremely painful, but she wanted to just do one there in the clinic.
A chance for a baby? Hell yes! I was game.
I remember being scared, having Isaac there with me in the patient room. He wasn’t allowed to go to the procedure, but a nervous twitchy intern was. The monitor was above me so that I could see the X-ray of myself. Doc explained everything as she went, showing me on the monitor how ideally the dye would go through my uterus up to the fallopian tubes, and spill out into my body cavity.
The process was excruciatingly painful too, and I remember cutting my palms with my fingernails because I was clenching my fists. I tried to not make any noise and just concentrate about how wonderful this would be if it actually worked. I stared unblinking at the monitor, watching the black dye fill up my uterus as Dr. Mehta gently pushed it through. Willing the damn ink to emerge. Come on, come on, come on.
After a few quiet, intense moments, Dr. Mehta exclaimed, “Look!” She hopped up off the stool and showed me on the monitor where dye was flowing out on both sides. Wait… IT WAS FLOWING OUT ON BOTH SIDES. That would only be possible if… the Fallopian tubes were clear! Her hypothesis was right! Between the initial HSG during my surgery, and the one that day, there was enough pressure to dislodge the scar tissue from my tubes and effectively clear them out!
I was a bit stunned as I was cleaned up and helped off the table. A nurse walked me back to my room where Isaac was waiting nervously. I walked into his arms and burst into tears.
As far as I was concerned, this was the miracle of the century.
Doc gave us the clear to try on our own to get pregnant, with two important conditions: if we got pregnant, we needed to get to the OB right away for an ultrasound, to confirm that the pregnancy had implanted in the uterus like it should (not gotten stuck in the tubes, creating an ectopic pregnancy). And, if we ever got tired of trying to get pregnant the traditional way, we should come back to her to begin our first round of IVF. And with that, she gave us our blessing.
Now the good part: within a year we’d gotten pregnant! It did take us moving across Texas, building a house, and starting new teaching jobs, but hey it worked nonetheless. The pregnancy was smooth sailing as far as kiddo was concerned; it sucked for me, with severe morning sickness and sciatic pain, but baby was never in danger. Endometriosis seemed to be just a bad dream. My period didn’t return for over a year after kiddo was born (yay breastfeeding) and we got pregnant with Tiny as soon as we started trying!
I assume logically that my endometriosis will continue to grow once my period starts back up. Time will tell if I’ll need another laparoscopy – some women probably have endo and don’t even know it, since it doesn’t cause pain. And some women have horrible pain, though their cases don’t look that severe. Endo is a strange, strange condition. Unfortunately for me, my case is extremely severe AND extremely painful. But if I’m not menstruating, it’s not spreading.
What we know about endo is this: endometrial cells somehow get outside the uterus, into the body cavity and as far as the nose or lungs. They don’t know that they’re not still in the uterus, and they react every time a woman’s hormone levels change. The cells’ normal job is to flush out the nutrient-rich lining of the uterus, in the case that the woman doesn’t have a fertilized egg to nourish. But the cells go through the motions even if they’re not in the uterus. So, you get excruciating pain wherever those little bastards happen to end up.
What we don’t know is why our bodies do this, or how to slow/stop it (other than laparoscopy or hysterectomy).
I wish I had someone to hate for endometriosis, like a person responsible for its existence. I want a name, damnit. But of course I don’t get that satisfaction. I get an agonizingly painful condition which is largely unstudied and unexplainable. I get to feel like my body is working against me. I don’t get to blame someone. Hell, no one even asked me.
Now, thanks be to God, I have two beautiful little children to give all my energy to, instead of sitting and wondering if the endometriosis is spreading, growing scar tissue like living cobwebs in my body.
But every once in a while, the thought crosses my mind.
Will endometriosis come back to haunt me? Will I randomly get incapacitated and collapse in my kitchen from a pain I can’t control? How many more women will face sleepless nights and ER visits before more is learned about endometriosis?
Please contact me by leaving a comment, or privately via email, if you’d like to talk about endometriosis or infertility. I’m not a medical professional but I am a human being and a woman; no one is going to go through this alone, if I have anything to say about it!