Sick.

My recent lesson in hope

Sick. My recent lesson in hope.

Have you ever been sick and not known why?

Last fall, I knew something was wrong. I was exhausted. There was pain in my upper right abdomen and in my lower right abdomen. Food was painful to eat. I was losing weight.

A few months later, I’d seen at least 12 different doctors and had several different inaccurate diagnoses including abdominal wall pain and irritable bowel syndrome. I knew my abdominal wall muscles were fine, and I definitely didn’t have irritable bowel syndrome.  Appointments are hard to come by with specialists though, and I couldn’t get an appointment to see a gastrointestinal specialist in St. Louis for months.  In sheer frustration, I called a friend who somehow found me an appointment. That doctor looked over the list of tests that had been run, my list of symptoms, did an exam and then ordered the one test that would have uncovered the problem, a HIDA scan with ejection fraction. The HIDA scan test showed a 0% ejection fraction which means that no bile was coming out of my gallbladder. Surgery to remove my gallbladder was apparently next on my list of things to do. The difference between that doctor and the twelve doctors before her?  She discovered the problem with my gallbladder because she actually listened to me.

During surgery, the surgeon found that my gallbladder had torsed (twisted). He also said the gallbladder’s bile duct had somehow become so small that bile could no longer get out. He also discovered and drained a peach-sized cyst on my right ovary. 12 doctors had told me that nothing was wrong. The 13th doctor finally ordered the right test.  The 14th doctor actually resolved it.  By then, I’d lost twenty pounds.

After my first surgery, I spent several nights listening to the nurses chat all night at this nurses station outside my door.

A few weeks later, I continued to lose weight even though I could finally eat again without pain. The pain in my lower abdominal area just wouldn’t go away. The gallbladder surgeon had expressed concern and recommended that I see a doctor about my ovary.  I could tell that the pain was related to ovulation. My ovary just never stopped hurting, but every doctor kept telling me that the pain I was experiencing was normal because it was more intense around the mid part of my cycle. Ladies, please don’t let anyone ever tell you that ovulatory pain is normal when it lasts your entire cycle, repeatedly, every single cycle. That isn’t normal.

Throughout this whole process, I found that many doctors ask one question repeatedly. “Is it really that bad? Are you SURE that it hurts there?” One even poked my naval and asked if “that” hurt too.  One doctor pulled out a pelvic model and start describing a female cycle to me like I was eight years old and needed female anatomy 101.  After 18 years of charting my cycles, I knew how my body functioned, when I ovulated, the length of my luteal phases, and what ovulation felt like in my body. Something was wrong, but it felt like nobody would listen to me. Eventually, a good friend told me about a female pelvic pain specialist at a local hospital.  Finally, a doctor who would listen. She was the fifteenth doctor I’d seen since this story started in the fall.

The ultrasound tech talked me through the ultrasound where she found the large cyst. She told me what she was seeing and answered my questions. Her kindness resonated with me for days.

After treating me for an infection left-over from my first surgery, she found a large complex hemorrhagic ovarian cyst on my right ovary. It wasn’t the first time we’d seen a larger cyst on that ovary, but it was the first time we’d seen a cyst this large. Because the issue had persisted for so long, we made the decision to remove the cyst, the ovary, and the fallopian tube.  During surgery, she also discovered a small benign mature teratoma in my ovary. It’s all gone now. Because she listened and took action, the pain is gone.  Nothing scary is growing in my abdomen anymore, and, slowly, my strength is returning.

We still don’t know why all those things happened all at once, but it did send me into a hermit state. Chronic pain changes people. I look at my face today compared to my face a year ago, and I’ve obviously aged. You haven’t seen me much on social media. My travel schedule was cleared. I actually canceled the last few speaking engagements last year because I just couldn’t pull a suitcase through an airport. Some of my friends even disappeared because they didn’t understand.

For some people, this story will come as a surprise because you didn’t even know that I was sick. I couldn’t talk about it. I’d be laying on yet another table in some testing room in another hospital and start a post, but then delete it. There was never a right time to start sharing because the journey was an emotional rollercoaster. We didn’t have answers and it didn’t seem fair to put you on the rollercoaster with me. This world has enough stress in it without sharing mine with you.

I’d take my notebook to doctor’s appointments and work on new ideas.

That said, the emotional battle was real and lonely. In December, I was headed home from work one day in tears because it felt like we might never get to an answer and every single bump hurt my body. As I was driving home, I decided to just get in the river and go with it instead of fighting against it. This was my reality. I could choose peace, or I could choose to be upset. Peace was the better option. The release that came was so freeing.  I knew that my days were going to have pain in them and just went with it.

I started doing things that brought me joy… like planning a breakfast for a few friends at my house during the holidays so I could see their faces. Picking out Christmas presents was important to me, so I laid in bed on Thanksgiving weekend and did the Christmas shopping for my kids. Our kids had grown, so I planned a family photo shoot. Little bits of joy bring bright light in the midst of deep dark places.

Not long later, my phone rang and it was someone asking how I was doing.  It was my friend. She hadn’t given up on finding an answer, and she was calling to make sure that I went to my follow-up appointment with that pelvic pain specialist. I was still hurting and one more round of “we’re not sure what’s wrong with you” was more than I thought I could handle. Cancelling that appointment was in the back of my mind, but I did go, and it was during that follow-up appointment that they decided to take out the ovary.

There’s a happy ending to my story now. I have hugged the last doctor.

The gallbladder is gone.  The ovary is gone. I’ve lost 25 pounds. Looking back, the final diagnosis looks like a combination of a closed bile duct, a torsed gallbladder, a benign mature teratoma in my right ovary, complex hemorrhagic corpus luteal cysts, and endometriosis. I don’t know what the root issue was or why it all happened all at once.  How one person ends up with all that causing problems at the same time… who knows.

Jimmy got goofy with the puke bucket. Apparently, my body doesn’t particularly love anesthesia.

I’ve been recovering for the last few weeks. I have a long way to go before I’m truly strong again, but the pain is over. Feeling the pain leave my body and my brain waking up again has been such an intense emotional experience. There’s hope!  It’s been months since words flowed without a struggle. Finally, the words are becoming sentences. The sentences are coming back together in paragraphs and the paragraphs are forming stories.

Those stories are full of people.  My friends have helped me with referrals to different doctors and pushed me to keep looking for answers. The answers came from questions I learned how to ask because of patient resource libraries built online. I’ve had a husband who loved me, and kids who put up with a mama who spent most of her time in bed. My staff has managed to operate without me being as present as I wish I could have been at work. I am so thankful for each and every one of the faces that floated through the timeline. I haven’t been the best of friends, the best wife, the best mama, the best anything that I could be… but I have seen each one of their faces and, part of writing this story down is to say thank you to each of them for being there.

Some of you have stories that are much more difficult or challenging than my recent path. There’s a part of me that aches for your pain.  If you can identify with parts of this story, I encourage you to keep asking questions. As frustrated as I’ve been over the last few months, I’ve also realized that some things are hard to diagnose and resolve. Many doctors mean well. Some are tired and need a break. Some are bitter and shouldn’t be treating patients anymore. Sometimes it takes time and a team of doctors that is really good at detective work. Don’t give up. Find your place of peace and keep walking. Go back to that next appointment. If you’re not finding the right answer or your doctor won’t listen, look for a different specialist. But no matter what, hold onto hope.

Below this post, you’re going to find some of the resources I found as I was researching what was happening to me. These resources are listed below, grouped in a timeline format so it’s easier to understand what I was thinking about as I found the resource. I hope this list is helpful to someone else’s health journey. Use these links to your heart’s content.

Please, share your own stories and resources in the comments. If you know someone who would be encouraged by my story, please use the share bar to share it on Facebook or Twitter.

If you need a referral to a great doctor, please let me know. I will be happy to share the names of the physicians who were helpful to me along the way.

If you haven’t subscribed to the blog, be sure to subscribe today. I’ve been writing more as my brain has been waking up from the blur… and I can’t wait to get some of these ideas of my head and into yours!

Much love to you my friends. I’m glad to be back.

September

I couldn’t eat and hadn’t been able to keep any food down for a number of days.  I had pain generally in my upper right quadrant and generally in my lower right quadrant. My doctor suspected appendicitis and sent me to the emergency room. I did not have appendicitis. The emergency room found the first complex ovarian cyst.

October

Then I was seen at another clinic where a team of doctors did a full abdominal and pelvic workup (colonoscopy, endoscopy, biopsies, ultrasound). The doctors were looking at the pain as if it was coming from a single source instead of considering the possibility that it had two different sources. Their first round of tests didn’t give them any answers, but, unfortunately, they didn’t continue to ask the ever important question of “why”.  They had a suspicion of “abdominal wall pain” and “irritable bowel syndrome” and wanted to inject cortisone into my abdominal wall muscles.  We declined that procedure.

  • The Abdominal Wall: An Overlooked Source of Pain – They told me that I needed trigger point injections into my abdominal wall muscles. They thought I had entrapped nerves rather than something going on internally.
  • 5 Ways to Treat IBS Without Drugs – Because I couldn’t eat, one of the possible diagnoses considered was IBS.
  • Some of my colonoscopy results were interesting, so I spent some time reading through this overview of Gastric Pathology.
  • There was a discussion about putting me on a special medicine that handled chronic organ pain.

Then I was seen by a local gastrointestinal specialist who reviewed all of my previous tests. She sent me for several other tests – tests that showed that I didn’t have any gallstones, but this doctor was responsible for ordering the one test (HIDA scan with ejection fraction) that finally showed that something was very wrong with my gallbladder.

November

The gastrointestinal specialist referred me to a surgeon to have my gallbladder removed.

The surgeon requested one final test, an upper right quadrant ultrasound (which was normal).

Then I had my surgery. They found that my gallbladder was torsed and they discovered another cyst on my ovary that was drained. Instead of outpatient surgery, I spent three days in the hospital recovering.

December

I ended up in the emergency room a few weeks later because of abdominal pain following surgery only to find out that I had bilateral corpus luteum cysts, one of which had apparently ruptured.

January

Six weeks later, they found another large cyst on my right ovary.

These are some products that helped me feel better (affiliate link).

*************

I hope this list is helpful to someone else’s health journey. Use these links to your heart’s content.

Please ask questions, share your own stories, and add resources in the comments. If you need a referral to a great doctor, please let me know. I will be happy to share the names of the physicians who were helpful to me along the way.

Don’t forget to subscribe to updates so you don’t miss any of my upcoming blog posts.

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

SaveSave

Jenn is the Founder and CEO of Cotton Babies. She holds an Executive MBA from Washington University. She was awarded Ernst & Young’s Entrepreneur of the Year award in the Emerging Category for the Central Midwest Region in 2011. Among many other awards, she recently received a 2017 YWCA Leader of Distinction Award for Entrepreneurship. Jenn holds many patents on various inventions in a number of different countries and is listed as one of 50 Missourians You Should Know. She is particularly fascinated by languages, chickens, and children (she has four) when she’s not reading economics journals.

Leave a Reply

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

7 thoughts on “Sick.

  1. Jenn…amazing. We all are going to tackle health crises at some point, but you gave such humanity to the actual ins and outs of being on a hunt for what is wrong and then the roller coaster of experiencing step-by-step answers in the form of yet another painful procedure. I’m so glad you are pain free now, and have names for the mysteries. Thank you for sharing so poignantly, and golly I’m proud of you for all you did, do, and will continue to do! But mostly I just like who you are. :):):)

  2. I am so glad you are on the mend. I had notoced you were quiet but with our own drama going on I wasn’t sure if I was just missing your posts. You are not alone. I had doctors ignore me for 17 years about pelvic pain, one basically laughed at me and told me to drink Gatorade to cure my “gastritis” and told me my thyroid was fine. I literally had to cry to get her to order an ultrasound. She changed her tune when they found a 10 cm mass involving both fallopian tubes and one ovary. A thyroid antibody test revealed my body was destroying my thyroid. Thank you for sharing your story. I hope you are back to your energetic self soon.

  3. Jenn, I gave a similar story as well. It makes one wonder how many people, young people, die because some drs just do not listen to their patients. I am so glad your healthy again and doing what you love.

    I’m a huge fan of yours!