Endometriosis, Ovarian Cysts, and Other Fun Adventures in Gynecology

{Warning: this is a post that may make some (i.e. male readers) feel a bit uncomfortable. I try not to give too much information, but if talk of “woman times” or “lady parts” scares you at all, you may want to skip this one.}

When I was 21 years old, I stood in the parking lot of a movie theater and cried in a huddle with my two best girl friends from high school. I had just learned that I had endometriosis. For those of you not familiar with this lovely disease, it means the endometrial tissue from the uterus (similar to what is normally shed through menstruation) spreads through the pelvic cavity and attaches itself to various parts of the body. Though the affects of the disease vary from woman to woman, I was told to expect complications in becoming pregnant and possible infertility. Coupled with the excruciating pain of my first ovarian cyst (which led to the discovery of this diagnosis), it was a tough blow.

After a few months of processing and grieving, I went forward with the knowledge that my road to motherhood would be unpredictable, as would my experience with pain.

Fast forward 15 years later. Indeed, I found that I was infertile, though it hadn’t stopped me from becoming a mother to four beautiful children thanks to the blessings of adoption. After 8 years of marriage, we actually did see a specialist who confirmed that it would take a miracle (even with $20,000 a pop in vitro fertilization) to make infertility treatments work so we said no thank you. He also told me that, at my age, my eggs were old anyway, but I digress. Despite this, one of the sweetest memories of that consultation visit was my little Warren asking if the doctor had fixed me so that I could have babies. Life’s mysteries too hard for a toddler (and sometimes adults) to grasp. But I was at peace knowing that I would never get pregnant.

Ultimately, it wasn’t the infertility that was the most problematic part of this disease. It was the pain.

Last November, I started really hurting. After all these years of riding the roller coaster of pain, sometimes tolerable, sometimes debilitating, I was used to discomfort. But these recent experiences told me I was beyond the typical aggravated cramping associated with gnarly endometriosis periods. I was in full-blown pain. It was so severe that, when it came, I couldn’t even continue the task I was on but had to double over and wait for the sharp, stabbing sensation to go away. Worst of all, it was sporadic so I never knew when it was going to hit. Something bad was going on. And I hated the idea of dealing with it.

But I was good and went in to visit my specialist gynecologist only after a couple of months of this– better than my usual track record. After some testing, which included an ultrasound requiring a completely and painfully full bladder (I wasn’t sure if I would make it to the exam room without wetting the waiting room carpet, it was so horrible), the results indicated that I had another endometrioma (ovarian cyst) on my right ovary. The trouble was the excruciating pain was on my left side.

That meant the endometrial tissue had most likely attached itself to other unsavory parts, probably my intestines. Time to form a plan of action.

Dr. “Old Eggs” and I had history and I trusted his straightforward, if blunt, recommendations. He laid it out this way. I had two options: 1) continual birth control for years and years (most likely until menopause) to suppress my period, reducing symptoms and possibly shrinking the cyst, or 2) a hysterectomy. His reasoning was that just removing the cyst was like slapping a band-aid on the problem. I would only grow more cysts. Taking the hormones would be the first and least invasive step we should take. Undergoing a hysterectomy would be the last resort, but what I would eventually have to face.

I agreed, even though my past experiences with birth control left me feeling like a witch on her broom at best thanks to the highs and lows of increased estrogen. What did I have to lose?

I tried this for 8 months. It helped alright. The pain was less intense and less frequent, but it was still there. I still felt the impact on my life. Like wanting to accomplish things but never really feeling good enough to try. I felt like I was just limping along each day. It’s hardly the way you want to live, especially with four small children.

Finally, after much research and fasting and prayer, I decided that I didn’t want to put off the inevitable any longer. I decided to have the hysterectomy. It wouldn’t necessarily cure the problem, but it would help more than any option I had.

On January 3rd, I checked into the hospital at 5AM and underwent the 2 hour surgery. I’m 4 weeks into my 6 week recovery and doing fine. It’s still painful to sneeze and I don’t move around very well yet, but each day is better. I can’t lift anything over 20 lbs. for the entire recovery, so that’s made accepting help from others absolutely necessary. It’s been humbling all around.

There were moments before my surgery when I would freak out wondering how my body would react. Would it end my pain? Would he need to remove both ovaries? Would I need hormone replacement therapy? Would taking that put me back on my broom? But I had to remember that I had received a comforting answer through prayer. It would be alright. I had to trust in that and go forward.

He did remove both my ovaries after all. It was a game-day decision that became obvious was necessary after finding that both of them were covered in cysts and tissue, not to mention the muscles of my uterus were also lined with the stuff. The part that touches my bladder and colon were also affected. “No wonder you’re in pain,” confirmed Dr. “Old Eggs” who was also the surgeon. It was a relief to get it out.

So far, so good on the progesterone replacement. No hot flashes, like he expected. I feel good, overall. Now I just need to get over this surgery pain.

What a journey. I’m glad it’s over, or at least so it appears at this point. It’s certainly not the road I ever thought I’d be on, but it’s been enlightening, nonetheless. I feel blessed for the guidance I received in making this decision. And I’m grateful for modern medicine that can alleviate my pain.

13 thoughts on “Endometriosis, Ovarian Cysts, and Other Fun Adventures in Gynecology”

  1. Whoa baby! You’ve been through a lot. I hope that your recovery is so super speedy and that everything goes smoothly.
    Anything we can do from afar? Prayers, and…?

    love you!

  2. I’m so glad you are starting to feel better!! As they say in Germany, “Ich wünche dir eine Gute Verbesserung!” I wish you a good recovery.

  3. I love that you call him Dr. “Old Eggs”, since that’s the only way I remember him too from your stories :). You are a strong woman.

  4. Wow! I am so glad you have wonderful people around you. Then again, you all are awesome people and awesomeness attracts awesomeness. I sure hope you can hold your little ones soon.

  5. I am so proud of you for doing something to take care of yourself. Now just stop being so hard on yourself. No more “back on my broom comments” out of you, young lady!

  6. Jeannie, you are a champ. I only knew a very tiny portion of this story, so I was glad to learn more. I hope you continue to heal quickly!

  7. I’ve been waiting for this. Thank you so much for sharing your experience with us, and for providing Reason #37 Jeannie [Last Name] is Unbelievably Amazing. If I had gone through the same experience and written the same post, it would have consisted of roughly 85% whines and complaints. And you didn’t whine and complain at all! You are a saint and a trooper, and an amazing example to all of us. Love you Jeannie!

  8. Thanks for sharing your story. I was very curious. I’m glad you’ve been able to relax and have been taking it easy. Not easy to do with 4 young ones. You are amazing. Such a strong woman. Keep up the rest! I hope you continue to heal quickly and smoothly. 🙂

  9. I agree with Katie, except I would raise that to 99% whining and complaining! You’re an amazing person, Jeannie. Thanks for sharing your story. My prayers are with you as you recover.

  10. I’m just getting caught up on so many posts and I want to comment on them all…but may I just say to this one- you ARE AMAZING. I’m so sorry it’s been so painful and you’ve had to deal with so much PAIN. Glad that you are recovering and hopefully will never hurt like that again. Bless you…

Leave a Reply

Your email address will not be published. Required fields are marked *