Chocolate cysts. While the name sounds kind of intriguing they are associated with endometriosis a disease that affects over 200 million women worldwide. As a matter of fact, 20-40% of women with endometriosis have an increased risk of developing chocolate cysts. Women like me go YEARS with peculiar symptoms that are dismissed by doctors or misdiagnosed. And, what’s sad is you’ve probably heard nothing about chocolate cysts or the disease that causes them. So, let’s discuss the basics. What exactly are chocolate cysts and how are they tied to endometriosis?. And, how can you advocate for your health and get properly diagnosed? Specifically, if you believe you have endometriosis and/or chocolate cysts.
Wait, What’s Endometriosis?
If this is your first time ever hearing about endometriosis let me give you a brief definition of what it is. In a nutshell, endometriosis is a disease in which tissue similar to the tissue found on the uterine lining begins to grow and proliferate outside of the uterus. These endometrial lesions can attach to the ovaries, fallopian tubes, bowels, kidneys, diaphragm, and other organs within the pelvis. In rare instances, this tissue has been found on the lungs and brain.
This tissue is infamous for causing irritation in the areas that it attaches to. Thus, causing the pain and inflammation that many women with endometriosis experience. Furthermore, the continual proliferation of this tissue causes scarring and adhesions to develop. Hence contributing to impaired function to organs and areas endometriosis attaches to.
Ok, But What’s A Chocolate Cyst?
Well, when it comes to chocolate cysts (or their medical term endometrioma) they are often found in progressive stages of endometriosis. Specifically, stages 3 and 4. They were given the name chocolate cysts because they contain brown, rust-colored liquid that resembles chocolate. This is due to the trapped tissue and blood that they contain.
They form when endometrial tissue begins to attach to the ovaries. Additionally, if left untreated these cysts continue to grow and can cause serious complications.
Complications associated with chocolate cysts include:
- Impaired ovarian function
- Increased risk of cyst rupture
- Ovarian Torsion
- Fertility complications
Chocolate Cysts: Know the Signs & Symptoms
As it pertains to signs and symptoms chocolate cysts and endometriosis share similar symptoms. Yet, there are many instances where they are undiagnosed or not properly diagnosed. Some of this is due to a lack of awareness and brushing off these symptoms as “normal” or finding them too embarrassing to talk about. And, other times it’s due to medical negligence. Listed below are signs and symptoms that shouldn’t be ignored.
- Painful periods
- Chronic pelvic pain
- Painful intercourse
- Painful bowel movements
- Heavy menstrual flow
- Low back pain
- Persistent pain on one side of the abdomen or low back
- Fertility complications
If you find that you’re experiencing these symptoms schedule an appointment with your doctor to get evaluated. While these symptoms are common and can be due to a variety of underlying issues. You shouldn’t ignore or dismiss them as nothing serious. It’s also important that if you have a known history of endometriosis in your family that you discuss this with your doctor during your appointment as well.
Chocolate Cysts: How They’re Diagnosed
Generally speaking, cysts can be diagnosed via imaging tests such as pelvic ultrasound, magnetic resonance imaging, or CT scan. But, these tests are incapable of differentiating between different types of ovarian cysts. Furthermore, imaging tests are not an accurate way for endometriosis to be diagnosed since endometrial implants can not be seen via imaging tests.
So, imaging tests are beneficial in identifying the presence and size of a cyst. But, they’re not ideal for diagnosing chocolate cysts or endometriosis. The only way to properly diagnose endometriosis and determine if the cyst is a chocolate cyst is via diagnostic surgery. Particularly, laparoscopy or laparotomy.
Laparoscopy vs. Laparotomy
The size of the cyst will determine the type of diagnostic surgery that your doctor will recommend. If it’s a small cyst ( less than 4cm) a laparoscopic surgery may be recommended. Whereas, if it’s a large cyst (larger than 4cm) a laparotomy will be recommended. Laparoscopy is considered to be a less invasive surgery with shorter recovery time. It involves the surgeon making small incisions on the abdomen or pelvis. Then a lighted telescope is inserted into the abdominal cavity. Thus allowing your doctor to explore your internal organs to determine the presence of endometriosis and identify if the cyst is a chocolate cyst.
A laparotomy accomplishes the same thing as a laparoscopy. But, it’s a more invasive surgery. This is due to it being an open abdominal surgery that requires an incision on the abdomen. Therefore, providing the doctor with a view of the abdominal cavity and the opportunity to diagnose endometriosis and chocolate cysts. Each of these surgeries has instructions you are to follow pre and post-surgery. And, they also have different recovery times. You should discuss expectations, requirements, potential complications, pre/post-surgery instructions, and recovery with your doctor and surgeon.
Chocolate Cysts: Know the Treatment Options
Your current state of health, symptoms, cyst size, age, and desire to have children will influence the treatment options your doctor recommends.
Wait It Out
For instance, if you have a small cyst and little to no symptoms your doctor may advise you to wait and see if the cyst continues to grow or if it resolves itself. They may recommend hormonal birth control or medications such as Orlissa or Lupron to help “shrink” the cyst. Or, to address pain and symptoms.
But, you should discuss the side effects and complications that come with both of these options. Especially, considering the fact that if you indeed do have endometriosis these hormonal treatments may increase the proliferation of endometrial tissue and encourage cyst growth. Additionally, these treatments come with serious side effects and complications that persist long after use. Before you take any medication make sure you understand fully what you’re signing up for. And, that you know exactly how it’s going to work. This includes side effects and complications.
This treatment option is indicated for those that:
- Have cysts larger than 4cm
- Are at a high risk of the cyst being cancerous
- Experiencing painful symptoms
- Struggling with fertility complications or infertility
Consequently, this surgery can be quite risky since it can lead to healthy ovarian tissue being removed alongside the unhealthy tissue. Thus, leading to decreased ovarian function and premature ovarian failure. Make sure you discuss all concerns with your doctor before you consent to this procedure. And, know the risks.
Excision surgery is a highly involved surgery that should only be performed by an excision specialist. It involves the endometrial tissue being cut out of affected areas while minimizing damage to the surrounding area. You should discuss this form of treatment with your doctor to ensure that you understand risks, complications, and recovery time. You also want to make sure that they are qualified to perform such a procedure. This way if they do discover the presence of endometriosis during your surgery they can excise and remove it safely with your informed consent.
Advocating for Your Health
So, you know more about what endometriosis and chocolate cysts are. And, you know the symptoms to look out for. But, how do you communicate with your doctor and get a proper diagnosis? This is a legit concern since it’s a struggle for many women to have their pain believed. On average it takes anywhere from 5-10 years to receive an endometriosis diagnosis. And, many women find that doctors are quick to dismiss their concerns or downplay their pain. They may even feel pressured by their doctors to take hormonal birth control as a “solution” to their problems.
This is why it’s important that you learn to advocate for your health. Don’t be intimidated by doctors. And, don’t be afraid to ask questions, demand answers, question treatment plans, or request a second opinion. Your health is more important than a doctor’s ego. I repeat your health is more important than a doctor’s ego. Now let’s talk about how you can become a better advocate for your health and become empowered to speak up for yourself during your appointment.
Do Your Homework
The first and honestly most important step is to increase your awareness and knowledge before you even step into the doctor’s office. You can do this by making yourself aware of common diseases and conditions that impact a woman’s health. Then you can have real conversations with the women in your family to learn if there are certain diseases that are common. This is particularly important in regards to endometriosis since your risk increases when your mother or sister has it.
Track Your Symptoms
Next, you will want to track your symptoms. Keep track of information such as menstrual flow, pain levels, period length, spotting, cycle length, and how often you experience pain. Keep track of it all. If you’re not tracking your fertility I highly encourage you to look into it. Specifically, the symptothermal method. Taking a class or purchasing a book that can teach you how to become body literate will allow you to become more knowledgeable about what’s normal and not normal regarding your body. Plus, all of this information is data that you can bring to your appointment to share with your doctor. Hence, making them aware of the fact that it’s a long-standing issue you’ve been struggling with.
What To Discuss With Your Doctor During Your Appointment
Finally, when you’re at your doctor’s appointment you want to discuss everything with them. And, I mean everything. This includes your family history, menstrual history, sexual history, and medical history. Discuss your reproductive health including any pregnancies, miscarriages, and abortions. And, share your symptom journal with them. Let them know how long you’ve noticed these issues. Including what you’ve done to improve the symptoms, what worked and what didn’t. Leave nothing out.
Also, share your suspicions. If you already know there’s a history of endometriosis in your family mention this to them. Ask if this could be a sign of endometriosis. Discuss with them what the diagnostic options are, and if they know specialists that they would recommend.
Even with you doing your due diligence you may still run across a doctor that doesn’t take you seriously. If that’s the case you don’t have to put up with it or accept defeat. If they refuse to take your complaints seriously request respectfully that they make a note of it in your file. Ask them to outline exactly why they are refusing to proceed with a diagnostic procedure and fire them. Make sure you request a copy of your records. There may be a small fee if they are being printed but they can not legally deny you the right to see your records. If they claim they can’t provide a copy of your records you can politely remind them that under the Health Insurance Portability and Accountability Act (HIPAA) you have a right to access your health information. If they refuse to release your records you’ll be forced to file an official complaint. Once you have your medical records you are free to obtain a second opinion and discontinue seeing them.
Speak Up, Speak Out
Endometriosis impacts the lives of 1 in 10 women here in the U.S. Additionally, it affects over 200 million women worldwide. At least half of these women will develop issues with chocolate cysts. And, while there is increasing awareness regarding this disease and its impact on women’s health there’s still more work to be done. Learning how to speak up for yourself and becoming aware of women’s health issues can help empower you to take charge of your health. Thus, causing you to become a better advocate of your health. And, demanding better care from your medical professionals.
Educate yourself and make yourself aware. Don’t allow anyone to tell you that your pain doesn’t matter or that your symptoms aren’t valid. You have permission to demand answers for your health. Furthermore, you deserve the right to request proper diagnosis and treatment. If a medical professional fails to do their job don’t be afraid to seek a second opinion. You’re not dramatic and you’re not doing too much. Speak up for yourself and for your health.
- Healthline | What Are Chocolate Cysts? | written by Donna Christiano | medically reviewed by Valinda Riggins Nwadike MD, MPH on September 27, 2019
- Medical News Today | What Is A Chocolate Cyst | written by Zawn Villines | medically reviewed by Deborah Weatherspoon, PhD, RN, CRNA on April 23, 2019