Are you struggling with painful periods? This may be occurring due to the growth of tissue that normally lines your uterus, which begins to grow outside of it.
Even when this tissue sheds each month, it causes severe inflammation in the pelvis and scar tissue to accumulate, and this condition is still one of the most misdiagnosed in women’s health, often mistaken for IBS or simply considered as severe cramps.
It takes many women almost 7 years to be diagnosed correctly. If over-the-counter painkillers are not touching your endometriosis pain, then it’s time for a correct diagnosis.
What Is Endometriosis?
Your uterus lining (endometrium) grows every month and then sheds during your period. That is normal. But in endometriosis, tissue that normally lines the uterus develops outside the uterus, where it isn’t supposed to be.
It is most likely to develop in or around the ovary, fallopian tube, tissue in the pelvis, or on the outside surface of the uterus. In some severe cases, it can develop in the bowel, bladder, rectum, and occasionally the lungs or skin.
When you get your period, it attempts to pass, but it has nowhere else to go, and so it causes bleeding, inflammation, and eventually scar tissue called adhesions. And sometimes fluid-filled cysts on the ovary, called endometriomas.
It is that cycle of inflammation and scarring that makes endometriosis pain so widespread and perplexing. Endometriosis is not a term for a bad period. It is a long-term inflammatory disorder that may affect several organ systems.
There is one important thing to know, that there is no definite link between the severity of your symptoms and the severity of your endometriosis.
A small number of women with advanced endometriosis report little or no pain. Others with small areas of growth experience debilitating symptoms. Even if your imaging and exams are normal, your pain is real and needs to be investigated.
How Do I Know If I Have Endometriosis?
It is a question that most women ask us, and it is just the right question to ask. The following are the most common symptoms that can indicate that the pain you are feeling is due to endometriosis.
1. When Period Pain doesn’t go away with Ibuprofen
The most common symptom of endometriosis is abdominal pain. Almost all people have some pain during their period, and that’s a different type of pain if they have endometriosis.
Cramping that is so bad that it makes it hard to work, go to school, or do regular activities. Pain that spreads down into your legs or lower back. Not only does it start days before your period, but it also causes cramps.
If you are using the maximum amount of painkillers and still can’t function, this is a big red flag.
2. Chronic Pelvic Pain
Women affected by endometriosis may have pain in the pelvis that doesn’t go away during the month. This may be a constant dull ache or feel like heavy compression in the lower abdomen or intermittent sharp pain.
Sometimes it becomes quite intense around your ovulation phase. In some cases, this pain gets worse over the course of weeks and months.
One of the most significant symptoms pointing to the diagnosis and treatment of endometriosis is chronic pelvic pain, with no known cause.
Endometriosis has been identified in 12–32% of women who have surgery for pelvic pain.
3. Pain During or After Sex
Another symptom of the disease is pain during sex, especially during deep penetration. This is because the tissue of the endometrium can also spread close to the ligaments of the uterus, the ovaries, or the space behind the uterus.
During sex, pressure in these areas directly irritates inflamed tissue. This pain may last for hours or even a day or two after sex.
4. Gastrointestinal Problems
Many women are misdiagnosed with Irritable Bowel Syndrome (IBS) when they actually have endometriosis. If the tissue is growing on your bowels, it causes severe bloating, painful bowel movements, diarrhea, or constipation, usually right around the time of your period.
5. Infertility
Sadly, for approximately 30% to 40% of women with endometriosis, the initial symptom is their inability to conceive. Scar tissue may block the fallopian tubes or interfere with the movement of the egg.
Many studies indicate that 20-40% of women with infertility have endometriosis, and even as many as 50% of women who undergo surgery specifically to address their fertility issues are found to have endometriosis.
Endometriosis can affect fertility in two main ways. It can cause the fallopian tube to miss the egg after it has been released from the ovary, or it can cause inflammation in the pelvis, which can negatively impact the egg, fallopian tube, and uterus.
If you have been trying to conceive for 12 months (or 6 months if you are over 35), endometriosis should be part of the conversation with your provider.
Understanding Endometriosis Pain
The first thing to keep in mind is that it is best to know the difference between normal cramps and cramps caused by endometriosis.
Normal cramps are usually felt in the front of your lower belly. The pain from endometriosis is far more severe and intense. It can be described as a sharp sensation in the vagina in women. It may spread into your lower back, down your legs, or into your rectum.
In some women, the pain may even be severe in the shoulders just before their period. This happens because the pain is due to the presence of endometrial tissue on the diaphragm, which irritates a nerve that goes up to the shoulder.
You should not ignore endometriosis pain if it causes you physical illness or fainting.
Why Diagnosis is Difficult
It takes a woman between seven and 10 years to receive a correct diagnosis of endometriosis on average. Due to its symptoms being similar to many diseases (such as ovarian cysts, IBS, or PVD), and due to women’s pain often being ignored by doctors, the diagnosis is often missed.
Unlike many other conditions, endometriosis can’t be detected through a blood test or regular ultrasound.
Large endometrial cysts in the ovary can be detected by a regular ultrasound; however, small implants of endometriosis can’t be detected. For this reason, an official diagnosis can only be made by having a minor operation, known as a laparoscopy, performed to look inside your pelvis using a camera.
However, there have been several studies and patient surveys that reveal that women who complain of pain are more likely to be told that it is due to anxiety or that it is not serious. This is a known issue in women’s health that disproportionately impacts women of color.
That is why it is crucial to have an endometriosis specialist. They understand exactly what to look for on an ultrasound and how to medically manage the pain.
How Is Endometriosis Diagnosed?
No single test can diagnose endometriosis. The typical diagnosis is as follows:
STEP 1: Comprehensive symptoms history
A competent provider will take a careful history of all of your symptoms. This history is one of the best diagnostic tools at our disposal.
Step 2: Pelvic examination
Sometimes, a physical exam may reveal tenderness in the places where the endometrium has grown, thickening of the tissues behind the uterus, or ovarian cysts. However, a normal pelvic exam does not rule out endometriosis.
Step 3: Imaging
A transvaginal ultrasound is the initial imaging examination and can be used to identify endometriomas or ovarian cysts that result from endometriosis. Pelvic MRI is more detailed than other imaging modalities.
Step 4: Laparoscopy (if needed)
In cases where imaging is inconclusive or surgical treatment is being considered.
Laparoscopy, which is a small surgical procedure with a camera put into the abdomen. It is the most reliable method for diagnosis and determining how much endometriosis is present.
In the same procedure, it’s possible to remove the visible endometrial tissue as well.
What You Should Do Next
If you have any of the above signs. If you want to use your health insurance, here are the steps you should take to get help:
1. Begin monitoring your symptoms right away
Avoid using your memory during the doctor’s visits. It is advisable to install a free period tracking app on your phone.
Record the time when your pain began, its intensity from 1 to 10, the location of the pain, like back, stomach, bowel, and the impact on your life.
This information will be very useful for your doctor.
2. See a Primary Care Provider!
It is generally not possible to simply call for an endometriosis specialist and schedule an appointment if you’re depending on your insurance to cover it. A referral is required. The best first step is to make an appointment with an in-network primary care provider.
A primary health care provider can exclude other factors, order a first pelvic ultrasound, and most importantly, correctly record your symptoms so they can be accurate in writing a medical necessity referral to a specialist.
3. Make sure to ask the right questions
At a visit with your provider, you should ask:
- What could my symptoms be due to endometriosis?
- Is it possible to have a pelvic ultrasound to rule out endometrial cysts?
- Do you have any recommendations for a gynecologist with experience in treating endometriosis?
Bottom Line
Endometriosis is NOT cancer. The tissue outside your uterus is harmless.
It’s important to note, however, that there’s a slightly increased risk of some ovarian cancers in the long term associated with endometriosis.
This is another good argument for continuing care with a healthcare provider. The risk is small, but not negligible, and it is real.
If you are wondering, “How do I know if I have endometriosis?”, then the best you can do for now is to start paying attention to your symptoms.
Record the time when the pain begins, its intensity level (on a scale of 1-10), whether or not the pain is associated with your period, and how it impacts your life. Record pain with sex, bowel movements, or at any random time of the month.
At Kairos Integrative Care Texas, Lola, one of our integrative primary care nurse practitioners will take the time to thoroughly assess your history and order necessary imaging and refer you to an endometriosis specialist, if indicated, using a care plan that fits within your insurance plan.
