One of my PhD students and I are attempting to start a new research project on women’s experiences of ovarian cysts. Because this is a new project for us, we have spent a lot of time researching the topic to see what others have to say about it. What we’ve found is that there is a serious lack of information about this kind of reproductive difficulty and, as a result, there is a lot of confusion among doctors and women themselves about ovarian cysts. Here is what we have found so far:
-There are lots of different kinds of ovarian cysts. Thus, when someone has an ovarian cyst they can still have quite a range of experiences. Cysts can be of varying sizes and can be filled with fluid, gaseous substances, blood, or semi-solid tissues. The two main categories are “functional cysts” and “non-functional cysts”:

  • Functional cysts are typically fluid-filled and are tied to the ebbs and flows of the menstrual cycle. They can increase or decrease in size alongside different phases of the cycle. When women have problematic symptoms, doctors often just have them wait a few menstrual cycles to determine whether the cysts will decrease in size themselves or remain a problem. The other common solution is prescribing women birth control pills, to help prevent functional cysts from growing. Women often don’t know they have functional cysts however. It is possible that many of us have them but do not know, because there are often no signs or symptoms. If there are symptoms, then it’s often because the cyst has grown enough to put pressure on other organs or because the cyst has ruptured. Women in their 20s and 30s are often diagnosed with functional cysts, but women over 40 can still get small follicular cysts that fall in the “functional” category.
  • Non-functional cysts do not correspond to the menstrual cycle, and often are filled with tissue. There are lots of different kinds of non-functional cysts, which makes this type of cyst even more confusing for women and doctors. From what we read, this category of cysts is often confused with fibroids and laparoscopic or open abdominal surgery is often the answer (depending on the size of a cyst). Sometimes these types of cysts can be linked to endometriosis and ovarian cancer, but are not necessarily predictive of those conditions; that is, some women just get cysts and that’s it. When women over 40 are diagnosed with this type of cyst, doctors often recommend complete hysterectomies (even though women themselves might not want this solution).

-We’ve also found that there are a range of diagnostic tools that can detect cysts (e.g., pelvic exams, ultrasounds, MRIs, and CAT scans) and a range of treatment plans and procedures (e.g., just making women wait to see if the cyst decreases in size, birth control pills, laparoscopic surgery, open abdominal surgery to remove just the cyst, hysterectomy, oophorectomy).

-We have read up on women’s experiences on online support forums, however, and realize that women typically experience misdiagnosis at first. When they present a problem for women, cysts have symptoms that are commonly associated with pregnancy, indigestion and IBS, menopause, PMS, PID, PCOS, gallstone or kidney problems, hernias, cancer, etc. As a result, women are told they are pregnant, fat, need new shoes, are just postpartum, eating badly, etc. It is often months before diagnosis, and months or years before treatment, unless a doctor knows to look for cysts. If women go to the ER or a family practitioner with signs and symptoms, they are often misdiagnosed more quickly; OBGYNs seem to be able to diagnose more quickly but still may be unsure as to what the solution is.

-In our quick perusal of online forums about ovarian cysts, we can see that it is not just women in the U.S. who are desperately searching for answers about ovarian cysts. It is women in many other countries as well. Women report the long waits until diagnosis and treatment, the worries about whether cysts will reoccur, their worries about the appropriate diagnoses and treatments, their distrust of doctors (who seem to be just as confused as women themselves most of the time), and the constant conflation of ovarian cysts with other reproductive and non-reproductive difficulties as well as with normal reproductive experiences. Everyone is confused and the common experiences seem to be confusion, worry, second-guessing, misdiagnosis, and long waits for answers.

-To us, this means that a lot more research is needed, and a lot more conversation needs to occur. We need to talk about ovarian cysts more loudly. When I mentioned in class one day that I was researching this topic, about a third of the women in the class said they either had personal experience with cysts or had a family member or friend who had experience with cysts. If it is true that this many women experience problems with cysts, they are well worth our attention.

-Just to give readers a flavor of the kinds of things women report about ovarian cysts, I’m sharing the YouTube video above, and here are a few of the online forums we’ve looked at as well:

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