By TTC Warrior and Fertility Advocate Jennifer Jay Palumbo
This month, one of the many goals is to help inform everyone exactly what the symptoms are, how to treat them best, and ideally, find a solution to getting the necessary care or intervention to address the long-term health issues endometriosis can cause.
What is endometriosis?
Endometriosis is when the lining of your uterus (known as the endometrium) grows outside of the uterus, most commonly on the ovaries or fallopian tubes. The lining may also be found around the pelvis, bowels, and bladder. Having the endometrium in a place other than the uterus can frequently cause pain or menstrual-like cramps. Everyone woman is different, and symptoms can vary. In some cases, 20–25% of patients don’t even have symptoms at all. Below are the most frequently described symptoms:
- Pain or discomfort
- Pain with urination
- Painful intercourse
- Heavy menstrual bleeding
Four Questions For Four Doctors
Below, I spoke to four different reproductive endocrinologists to gain insight into this disease.
Can you have endometriosis and not have symptoms?
Yes, you can have endometriosis without having symptoms.
Diagnosis of endometriosis typically occurs when investigating symptoms like painful periods and pain with intercourse, but ’silent endometriosis’ can be found during surgery for other reasons (endometriosis implants seen at the time of appendectomy) or during an investigation for infertility either by laparoscopy or endometrial tissue testing for BCL6 levels.
High levels of the BCL6 protein found in the endometrial tissue (endometrial biopsy) can indicate a 90% chance of endometriosis on laparoscopy.
Patients must understand the only definitive way to diagnose endometriosis is to see the endometriosis implants in the pelvis and abdomen with laparoscopy – a high BCL6 level in the endometrial tissue is highly associated with endometriosis but not a definitive diagnosis of the disease. The appeal of BCL6 testing is a way to look at endometriosis without surgery (but the biopsy is pretty crampy!)
(Dr. Lora Shahine, Reproductive endocrinologist, Pacific NW Fertility)
Does EVERYONE with endometriosis have infertility issues?
In short, no. The longer answer, we are not completely sure how many women with endometriosis have infertility, nor do we really know how many women with infertility have endometriosis.
According to the American Society of Reproductive Medicine, historically, we saw 30-50% of women with endometriosis having difficulties becoming pregnant, and similarly, up to half of the women with infertility have endometriosis. However, this number varies widely between different studies and for a good reason. Endometriosis impacts fertility in many ways, including causing scar tissue or “adhesions” that can block a woman’s fallopian tubes. Her blocked tubes are the main cause of her infertility, even though the blockage was caused by problems stemming from endometriosis. Such a woman would be told she has infertility due to blocked tubes and may or may not know if it was due to endometriosis.
The one category of infertility diagnosis we often associate with endometriosis is “idiopathic” or “unexplained” infertility. Up to 30% of women have no clearly identifiable barrier to becoming pregnant and are thus labeled “unexplained.” The reason this number is so high is likely because there are many elements of fertility we don’t have an easy test for. These include egg quality, fertilization issues, tubal motility problems, embryo chromosomal abnormalities, and implantation failure, to name a few. Studies of women with unexplained infertility have found between 15-30% have endometriosis.
One of the other challenges in knowing how common endometriosis is in women with infertility relates to how it is diagnosed. The signs and symptoms of endometriosis can suggest the diagnosis; however, the standard method for formally diagnosing endometriosis is by a surgery called “laparoscopy.” Surgery is invasive and carries risks. Therefore, we don’t routinely perform it unless there is a compelling reason (i.e., severe pain). This means we often are unsure if a patient’s infertility is truly endometriosis or rather one of the other unexplainable causes.
The impact of endometriosis on fertility also depends on the stage of endometriosis and the amount of time it goes untreated. Sadly the average time to diagnosis of endometriosis is eight years. Therefore, fertility may be more compromised in women who go undiagnosed and untreated for extended periods of time.
(Dr. Joseph Davis, Reproductive Endocrinologist, and Medical Director of Cayman Fertility Centre)
Are there different types of the severity of endometriosis from mild to very severe?
Endometriosis can present in different severities. In fact, endometriosis has been categorized into four stages by the ASRM: from stage I to stage IV. The stages are based on the number of implants and infiltration depth.
Stage I is a minimal disease with a few superficial implants.
Stage II is a mild disease with more and deeper implants.
Stage III is a moderate disease with many implants, endometrial cyst(s) on one or both ovaries, and the presence of filmy adhesions.
Stage IV is a severe disease with many deep implants, large cysts on one or both ovaries, many dense adhesions.
The only way to diagnose endometriosis and know its stage is through surgery, where the surgeon can visualize the disease and assess it. Unfortunately, the severity of the condition stage does not always match the severity of the symptoms the patient experiences. For example, some patients experience severe pelvic pain with phase I rather than stage IV. This is called the paradox of endometriosis, where stage I (minimal disease) causes more pain than stage IV (severe disease). The thought is that though there is a minimal number of implants, these implants are active and irritating nerves in the pelvis. With stage IV, abundant amounts of implants and scar tissue in the pelvis are older and “burned out” diseases and don’t cause as much irritation of the pelvic nerves.
(Dr. Lowell Ku, Reproductive Endocrinology, Infertility, and Reproductive Surgeon at Dallas IVF)
What are other conditions associated with endometriosis?
Endometriosis can be associated with other inflammatory conditions like IBS, irritable bowel syndrome, and interstitial cystitis.
Of course, endometriosis is associated with infertility, painful periods, pelvic pain, and dyspareunia (painful sex).
When it comes to conceiving and your overall fertility, your doctor can walk you through all your options but be aware that it may take you getting one or two opinions before being accurately diagnosed and treated. You know your body best and if you sincerely feel you have endometriosis, absolutely advocate for yourself because endometriosis lasts much longer than just the duration of March!
(Dr. Serena Chen, Director Reproductive Medicine at IRMS Institute for Reproductive Medicine)