With the variety of symptoms, complicated diagnosis methods, and need to tirelessly self-advocate, gynecological health can be incredibly confusing. And of all the conditions out there, endometriosis is both one of the most common, and most difficult to pin down. So if you're experiencing symptoms, or have an inkling that you signs of endometriosis, knowing some of the common confusions can be incredibly helpful.
There is an overwhelming amount of anecdotal evidence out there that women with endometriosis often don't get the right answer straight away. This is in large part due to medical bias, but also partly due to the complicated nature of the symptoms of this disease.
"One of the key challenges in diagnosing endometriosis is there are a host of other conditions that have presenting symptoms similar to those of endometriosis," Eric Surrey, M.D., fertility specialist in Progyny’s Provider Network, tells Bustle. This reality, however, can become really emotionally draining. First, there's the physical pain. Second, there's the struggle of finding an answer.
"The diagnosis of endometriosis is not always straightforward," Dr. Surrey adds. "Many patients struggle with long delays before a diagnosis and often see multiple healthcare providers before a diagnosis is made and appropriate treatment initiated. For many patients, this often leads to frustration, stress, and potential worsening of symptoms." So if you're still figuring things out, you aren't alone.
No matter the reason you're trying to learn more, it's important to understand how your body works. And that sometimes there is not one single right answer. "It is common for [people] with chronic pain to have more than one cause of that pain," Dr. J. Biba Nijjar, an OB/GYN at Baylor Obstetrics and Gynecology at Texas Children’s Pavilion for Women in Houston, tells Bustle.
These are the eight conditions that endometriosis is often mistaken for.
Pelvic Inflammatory Disease (PID)
Just like endometriosis, pelvic inflammatory disease (PID) is no joke. An infection of the reproductive organs, PID can cause, along with other symptoms, severe pelvic pain.
This is a similar symptom to endometriosis pain, which, contrary to popular belief, does not occur only during period days. "Pelvic pain can occur with endometriosis, due to the scarring from the ectopic uterine implants," Dr. Gaither says. "This pain can be confused with [PID]." To avoid confusion, write down and mention all possible symptoms to your doctor, and make sure you don't leave any questions unanswered during your appointment. That way, you'll help get yourself the best treatment.
Irritable Bowel Syndrome (IBS)
Once again, this sometimes-confused diagnosis is another one that highlights that endometriosis symptoms include a lot more than just pain.
"IBS is a change in gut motility often associated with pelvic pain, bloating, and change in bowel habits that can also mimic symptoms of endometriosis and can coexist with this disorder," Dr. Surrey says. "Interestingly, symptoms can vary with the stage of the menstrual cycle." If you're looking to make sure you have the right diagnosis, a look into your fertility, or a normal colonoscopy can help you figure things out. Seeing if your symptoms react well to medication and dietary changes can be helpful too.
Because endometriosis is all about uterine tissue spreading outside of the uterus, pain can occur anywhere this tissue spreads. As a result, diagnosing based on where the pain is felt can lead you down the wrong path.
"Endometriosis can implant upon nerves within the pelvis causing back and leg pain," Dr. Gaither says. "These symptoms can be confused for sciatica. Sciatica is caused when there is disc herniation upon spinal nerves." You can find out which you're dealing with by doing x-rays, diagnostic surgery, or trying different treatments to see which work.
Uterine fibroids, also known as myomas, are noncancerous growths in the uterus that can end up being quite painful and uncomfortable. And sometimes, these symptoms look like endometriosis.
"Dysmenorrhea, (painful periods), or menorrhagia (heavy periods) from endometriosis can be confused with other causes [like uterine myomas]," Dr. Gaither says. If you present with back pain, heavy bleeding, and pelvic pain, you may have either condition. An ultrasound and lab tests can help you tell the difference.
Polycystic Ovary Syndrome (PCOS)
Polycystic Ovary Syndrome, commonly referred to as PCOS, is another common, painful gynecological condition. And although PCOS and endometriosis each affect an estimated one in ten people with uteruses, and can co-occur, they are often misdiagnosed.
"Patients with polycystic ovarian syndrome often have painful periods," Dr. Alan Copperman, Medical Director at Progyny, tells Bustle. "Unlike in endometriosis, when the pain is probably due to the body's response to cycling ectopic endometrium, in PCOS, the pain is most likely related to uterine cramping caused by irregular ovulation or even the absence of ovulation. Along with bloating and even moodiness, it is not uncommon to confuse some of the symptoms of PCOS and endometriosis." Finding the right doctor can help you figure out whether one — or both — of these conditions is afflicting you.
Interstitial Cystitis (IC)
Interstitial cystitis, also known as IC, is chronic bladder inflammation. It can be really painful, and can coexist with endometriosis. The two can also be confused.
"[IC] leads to pain with urination but can also be associated with chronic pelvic pain," Dr. Surrey says. "... This disorder is not typically associated with worsening during menstruation or infertility, but like endometriosis, IC can be associated with painful intercourse. Diagnosis of IC is classically made by cystoscopy, which allows for examination of the urethra and bladder." So if your bladder symptoms aren't getting better with dietary modifications or medication, it may be time to ask your doctor about receiving a diagnostic procedure.
Pelvic Floor Dysfunction
Like many of these conditions, Pelvic Floor Dysfunction is both similar to endometriosis in symptoms, and underdiagnosed.
Pelvic Floor Disfunction is what happens when you cannot control the muscles of your pelvic floor. "The pelvic floor is a basket of muscles that holds up the pelvis," Dr. Nijjar says. "Women with pelvic floor dysfunction have tenderness of these muscles and can often suffer from pain with sexual intercourse. In addition, certain movements like sitting or standing can be painful for women with pelvic floor dysfunction." Some of these symptoms look like endometriosis, and vice-versa. Particular symptoms like stopping and starting when you need to urinate, or needing to have several bowel movements in a short period of time, can indicate Pelvic Floor Dysfunction rather than endometriosis.
If you believe you've received the wrong diagnosis, it's important to always ask your doctor more questions, and often to get a second opinion. Being your own health advocate does not mean distrusting doctors, but it does involve doing a bit more research and investigation than you normally would. The body is a complicated thing, and you deserve to know what's going on when things don't feel quite right.