Blog of the Society for Menstrual Cycle Research

We Need To Talk About Ovarian Cysts

February 27th, 2014 by Heather Dillaway

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:
http://www.twopeasinabucket.com/mb.asp?cmd=display&thread_id=2885646
http://forum.wewomen.com/forum/maternite2/__f112_maternite2-Ovarian-cysts.html
http://www.patient.co.uk/forums/discuss/browse/ovarian-cyst-1641
http://www.experienceproject.com/groups/Have-Ovarian-Cysts/23850
http://www.medhelp.org/forums/Ovarian-Cysts/show/258
https://forums.womenshealthmatters.ca/index.php?/forum/41-ovarian-cysts/

  

9 Responses to “We Need To Talk About Ovarian Cysts”

  1. LeeAnn Jordan says:

    I am so glad someone is finally talking about ovarian cysts. I suffer everyday with these things, i lost my left ovary because of a cyst that grew to the size of a grapefruit inside the ovary but it consisted of a hard non drainable substance that killed the left ovary when it shrank. But now i suffer from cysts in the right ovary that continually pop and cause severe nausea, severe pain and drain me of energy. I recently went through my 9nth laparoscopy to have all the blood and fluid cleaned out of my uterus and from my ovary. And sadly today i am going to speek with a specialist about doing a full hysterectomy due to my hormones being out of whack since i quit getting the depo provera shot. It breaks my heart cause i wanted to try for one more child but my whole system is so messed up.

    • HeatherD says:

      Thanks so much for sharing, LeeAnn, and you should definitely check out some of the forums that I linked to, because it seems like women are getting a lot of support for their situations on these forums. There are plenty of other forums too if you just search for “ovarian cyst forums” on google or another search engine. Good luck today with the specialist and if you don’t feel comfortable with what happens at your appointment, make sure you go for a second opinion if you can afford it (although it sounds like you’ve probably been to quite a few doctors already). Let’s keep getting the word out that we need to talk about this! I am thinking of you.

  2. LeeAnn says:

    I am now reaching out for more help then ever as I mentioned in my first post I was heading up to see a specialist to set up a hysterectomy. I had been referred to her by my surgeon who had just done my ninth laporoscopy. During this surgery he had to clean old blood and all the fluid from out of the uterus and from around the ovary from all the cysts that had popped and also had to drain a cyst that was the size of a lemon and was in my ovary. Well with this visit she not only called me a liar but also told me I didn’t know what I was talking about even though she had the results right there in her hand from both the surgery and the results from my abnormal pap smears both from 2011 and this years she still called me a liar and has refused to do the surgery. I have already made an appointment with a different doctor but she has not explained anything to me. Can anyone tell me what did she mean when she said the cells on the cervix were grade A. Please someone help me.

    • LeeAnn says:

      I do need to mention that the only thing she is doing for me is putting me on birth control pills again the control the cysts but I have heard bc does nothing for cysts is there anyone who can shed some light on this I have been left in the dark once again

      • HeatherD says:

        Hi, LeeAnn, it sounds like you have had quite a roller coaster ride with your cysts, their treatment, and your experiences with doctors. Since the people who write this blog are not medical doctors, we don’t have the expertise to give you medical advice but I really would encourage you to seek new and different medical advice at this point. Don’t give up. Also, please post some of your questions on the online forums I mentioned in the original post because I do think many of the women and doctors on those forums have more expertise on this subject than I do. As much as I would like to be able to answer your questions, I don’t have enough knowledge in this area to help you. But your experience and the experiences of many other women make me realize even more that more attention needs to be paid to ovarian cysts. I know that many women are suffering just like you. I am sending good thoughts your way and wish you the best of luck in trying to find answers. If any readers of this blog have any ideas for LeeAnn, please post them!

    • Marianne says:

      Dear LeeAnn,

      It sounds like your physician isn’t doing their job properly; if you’re able, it might be a good idea to get a complaint form from the reception desk and write a comprehensive complaint about her behaviour. You could get a better explanation, and it would help avoid her in future.

      If she has directly called you a liar despite the records, she should be disciplined.

      As to your other questions, if you have had a cervical screen (pap smear) appointment, and the results are back, she might be talking about that – but it’s unclear from what you have said. If you haven’t had such a screening test, I’m really not sure what that would refer to, and again I would request another appointment with someone else to have it all clarified. Obviously the decisions you’re facing are big and you should be able to have someone explain things clearly to you, and feel that you can ask the questions you need in order to understand.

      Here are a couple of resources on screening; but better than asking the internet is speaking to the professionals who have access to your records (and who don’t contradict what you’re saying).
      http://www.nhs.uk/Conditions/Cervical-screening-test/Pages/Results.aspx
      http://www.cancerresearchuk.org/cancer-help/type/cervical-cancer/about/cervical-cancer-screening#high

      • HeatherD says:

        Thank you, Marianne, for joining the conversation!

      • LeeAnn Jordan says:

        Thank you Marianne for your reply, i guess i should have clarified things better. I agree with filling out a complaint form on that dr cause of her actions towards me cause yes she called me a liar even though she had all my results right there in her hand including my abnormal pap smear. The surgeon who had referred me to her had sent all the information to her but yet i was a liar. But to the lighter things i was able to get an appointment with a different dr so hopefully i will be able to have better answers to my problem.

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