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.
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.
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.
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.
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.
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.
- Understanding blood cell counts.
- Mayo Clinic: CBC with Differential Explained
- Characterization of Adnexal Masses – An article for radiologists about how to diagnose various masses that they might see on an ovary during an ultrasound.
- Transvaginal Ultrasound and Female Infertility – Another article for radiologists about how to identify and diagnose different types of follicles on the ovary.
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.
- Gallbladder and Biliary Tract Disease
- Chronic Cholecystitis – Hepatic and Biliary Disorders
- Biliary Pain without Gallstones
- Acalculous Cholecystopathy
The gastrointestinal specialist referred me to a surgeon to have my gallbladder removed.
- Laparoscopic cholecystectomy for acalculous gallbladder disease
- Reconsidering Cholecystectomy
- The gall of subordination: changes in gallbladder function associated with social stress
- Evaluation of the biliary tract in patients with functional biliary symptoms
- Gallbladder dysfunction: how much longer will it be controversial?
- Bile duct injury and morbidity following cholecystectomy: a need for improvement
- Laparoscopic cholecystectomy technique
The surgeon requested one final test, an upper right quadrant ultrasound (which was normal).
- Manual of Diagnostic Ultrasound
- Mayo Clinic’s diagnostic algorithm for right upper quadrant pain
- Progress in understanding acalculous gallbladder disease
- Acalculous gallbladder disease: the outcomes of treatment by laparoscopic cholecystectomy
- Study reveals brain mechanism behind chronic pain’s sapping of motivation
- Pitfalls of Diagnoses of Acalculous Cholecystitis. Case Presentation and Literature Review.
- It’s Galling: Diagnostic Dilemmas and the Gallbladder (read this!!)
- Pancreas Stuff: #3 (also read this!!)
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.
- What you need to know about Biliary Dyskinesia
- Torsion of the gallbladder in pregnancy
- Glutathione 411
- Ovarian Drainage: Cyst Aspiration
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.
- Ovulation detection in the human
- Ovarian Cysts Workup
- Ovarian Cyst Rupture Clinical Presentation
- Ruptured Corpus Luteal Cyst: CT Findings
Six weeks later, they found another large cyst on my right ovary.
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.
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