Warning: This isn’t my typical lame humor post. In this one things get real. And graphic. I’m talking about (gasp) female reproductive health issues! Feel free to close your eyes and run away screaming. I won’t take it personally.
Okay…are they gone? What? You guys are still here? Look, I’m not kidding. This isn’t the good fun reproductive stuff, it’s the uglier side about pain and disease. Fine, stay if you want but I tried to warn you…
Once upon a time I was a young girl who suffered agonizing pain during periods. I ate Advil like candy and spent several days every month writhing in bed with a heating pad on my belly. It was difficult to get up and walk around, much less go to school. People told me this was “normal” and that I was being a baby. I believed them and sucked it up.
Funny, this is exactly how I looked when I had bad cramps.
In my late 20s I met my husband. We got married, and not soon after we decided to try to get pregnant. I felt becoming a mom was my destiny, a lifelong yearning rooted deep in my bones. We tried for over a year with no luck. Around this time I started to have strange vague symptoms: bloating, pelvic pain, urinary, digestive issues. I saw many doctors over several years. One said I was “depressed”. One told me I had IBS. Another said it was stress-related.
Well, I thought, if they think it’s all in my head, I must be crazy. I trudged on, trying to live my life while ignoring that nagging feeling something was very wrong. Finally, feeling humiliated and defeated, I gave it one last shot and saw a Nurse Practitioner. She patiently listened to me and gave me a pelvic exam. The next words she said changed my life: “You have a large mass. I’m sending you for an ultrasound immediately.”
During the ultrasound I wasn’t scared. I felt pure relief. That may be hard to understand, but when you’ve basically been patted on the head by doctors for so many years, when one finally believes you, and there’s proof something IS wrong, it’s like a godsend.
The ultrasound tech was very quiet for a long time. Not a good sign. Then she kept asking me if I had to use the bathroom. Finally, she left the room to get a doctor. Yikes. After several minutes, they returned. She finally turned the ultrasound monitor toward me and pointed. “See that?” she asked.
“What? I don’t see anything.” It looked all black to me with no discernible shapes that resembled organs.
“That is a mass. It is so large it’s covering all your organs. Your bladder is flattened. I’m surprised you can hold urine at all at this point.” She put her hand on my shoulder. “Are you all right?” I was surprised at the technician’s warmth and kindness. It was probably the most compassionate interaction with medical staff I had had in decades, aside from the NP.
It turned out I had a large ovarian cyst, about 15 cm in diameter, or six inches, roughly the size of a soccer ball. I know, crazy. Why couldn’t it have been a baseball? Why not fruit of some kind? Pomegranates are nice. And how in the hell did I not know it was there? I suppose I thought I was just gaining weight or very bloated. Not to mention the rest of my abdominal organs were all squished to make room for this… thing. As much as I was happy to know what was wrong with me, I felt like a total freak. Like I should be on the cover of one of those old Ripley’s Believe it or Not! books: “Woman lives with giant tumor for months and doesn’t know it!”
Soon I met with a wonderful OB/GYN (who went on to deliver both of my babies) and he said I had to have major surgery as well as a biopsy of the cyst to rule out cancer. I was 31. My gut reaction? (pun totally intended) Get it out now. What in hell are you waiting for?
It was during this surgery that my doctor made another startling discovery. I had endometriosis. Everywhere. To put it simply, it’s when the uterus lining for some reason spreads and grows in other places it shouldn’t. Then every month it bleeds and becomes inflamed as if it were inside the uterus. And it was all over my bowel and my bladder and my ovaries and my fallopian tubes and oh, let’s just say it was all over the goddamned place.
So I had one obliterated ovary, one disintegrated fallopian tube, and the stupid giant cyst thing removed. It was benign. “But doc,” I cried. “Can I still get pregnant with only one pathetic, diseased, lonely ovary?”
“Yes,” he said. And I believed him.
After several miscarriages, (and along the way another diagnosis of a blood clotting disorder to boot, called the MTHFR gene or as I like to call it, the Motherf—er Mutation ), I eventually had my two babies. I’d even go so far as to call them miracles.
Unfortunately, the endometriosis didn’t go away entirely. (Maybe you’ve seen on the news this week that actress Lena Dunham knows what that’s like. I wish I knew who in the hell she is.) For years I tried several IUDs and drug therapies to keep it at bay. For some reason, the endo didn’t get the memo. To say I was in constant pain is an understatement.
After much deliberation, I had a partial hysterectomy at 39. Worst surgery of my life. And that was my fifth one. When my surgeon, in her words, “got in there to look around” (a phrase that makes me think of someone opening a suitcase and rummaging around for some socks) she discovered a horror show of Stage 4 endo. It was just a mess of adhesions and nodules and lesions, oh my. My organs — my bladder, uterus and bowel — were stuck together, some of them frozen in place, most of them crunched and flattened. What was supposed to be a quick 45 minutes turned into nearly 3 hours. She had to call in another surgeon to help her excise everything. I think there may have been a chainsaw or a weed wacker involved at one point. And to top it off, I was bleeding somewhere after the five incisions and they couldn’t stop it. Apparently, a nurse came out and told my husband it was “touch and go” at one point.
“It was a pretty hairy situation,” was how my surgeon put it later on when she sat by my hospital bed. “You really had us worried. You gave me a run for my money.”
Well. It’s how I do.
But I lived through it. I’m sure you guessed that part already. I even came home after a few days and managed to take care of my two year old not long after the surgery, a point I like to bring up to my husband whenever he has a cold. So, all in all I had a few good healthy years and felt like a new woman again. Until I felt like crap again.
Which brings me to today. It’s been over 6 years since my last surgery and you guessed it, another one is coming. I didn’t make this decision lightly. My doctor is open to alternative medicine and last year put me on a strict diet to curb the endo. I tried herbs, vitamins. I’ve seen chiropractors to help with my lower back pain. I even tried Lupron last summer. (A horrible, terrible, no-good chemo drug used for men with prostate cancer. Too bad I’m neither a man nor do I have a prostate.) I’m going to start seeing an acupuncturist this month. I’m not sure what’s left to try. Maybe a full body transplant? Give me Sofia Vergara’s.
So, another surgery it is. Will it finally cure the endo? I’ve read good things and bad. Mostly, the answer is maybe. Honestly, I have run out of options at this point. And chronic pain tends to wear you down enough to make you actually want to have major surgery. I admit I’m a little scared shitless this time. I suppose this is why I’m writing about it because it helps me gain some distance from that fear brewing in the back of my mind.
Last week, my doctor said it’s time to take out my remaining sad ovary and clean out the endo again, except this time I’ll be plunged into instant menopause. I don’t know about you, but just the sound of that gives me a hot flash. And to top it off, because of the extensive bowel endo I had last time, there’s a possibility of a bowel resection. (Oh, my god! I swore if there were anything I would never write about on this blog it would be a bowel resection!) She’s going to have a general surgeon on standby just in case they decide to yank part of it out. If they don’t, well, there’s a good chance I’ll end up with another surgery just for that in the near future.
“Oh, hell,” I told her. “Just take it all out! I don’t need no stinkin’ bowel! Could you give me a good tummy tuck while you’re at it? Maybe inject all that excess fat into my boobs? I swear I have a punch card somewhere that says Buy 6 Surgeries, Get One Free.”
The best part was when my surgeon, someone who’s been doing this for decades, said to me, “I’m not gonna lie, I am dreading your surgery. Dreading. It.”
When I told her, “that makes two of us” she responded with, “Yeah, but you’re the lucky one! You’ll be asleep! I’ll be awake!”
Good point. Let’s hope so anyway.
Thanks for reading this long, long, graphic TMI reproductive history of mine. I just had to get this out and let you all know I’ll be taking a very long break and won’t be around much. At least I get to lie in bed for a few weeks and read, right? But before I go, let’s review a few key points to ponder:
- Always trust your gut instinct.
- Always get a second, third, and in my case, seventh opinion.
- Always make sure your surgeon is fully awake during your surgery.
- Take care of yourself because it’s all you got, ya dig?
- Tell me again, who in the bloody hell is Lena Dunham? I’m stumped.
After it’s all over and I’m fully recovered, maybe I’ll come back here and start blogging about silly stuff again. And if you care to send some positive vibes, say a little prayer, or just say to yourself, “Damn, girl! See ya, wouldn’t wanna be ya!” I’d appreciate it.
Endometriosis, Women’s Health
Endometriosis Awareness Month, What Are The Symptoms Of This Commonly Misdiagnosed Disease
The Personal, Painful Ordeal of Women with Endometriosis
Endometriosis.org, global forum for news and information