All Things Endometriosis
March is Endometriosis Month. Although Endo Warriors are common among menstruators around the world, diagnosis is often delayed and misinformation is everywhere. These two outcomes aren’t always necessarily done with bad intent, but the outdated descriptions of the disease cause a lot of people with Endo to endure severe period pain and interruptions to their day-to-day routine.
Ahead of this blog post, we sat down with Dr. Bala on an Instagram Live to ask the basic FAQs about Endo. Dr. Bala, ND is a longtime member of the August Medical Board who offers integrative solutions for any hormonal health issues – like endometriosis, among others.
Since Endo has many contesting definitions, we made sure that the following information was also vetted through Shawn Tassone, MD, PhD, FACOG. He has 20+ years of experience as a double board-certified in Obstetrics and Gynecology, and by the American Board of Integrative Medicine.
What is endometriosis?
Endometriosis is a disease that affects 1 in 10 menstruators between ages 15 and 49.
At its most basic description, and in terms of reproductive health, it's a chronic, systemic disease where the growth of endometrial-like tissue is outside of the uterus.
This tissue can grow in various places beyond the pelvis. For example, in other organs such as: your bowels, kidneys, liver, and in severe cases, even in your lungs, brain and sinuses.
Throughout the stages of the menstrual cycle, the endometrial-like tissue potentially acts as endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped. It can cause issues ranging from ovarian cysts (endometriomas) to implants throughout the pelvis and body and contributes to infertility.
Does anything cause endometriosis? Is there any way I could prevent this?
The cause is mostly unknown and unfortunately, it is not preventable. There are several ‘theories’ about causes, but no certain explanation.
What we do know, however, is that it’s an inflammatory condition meaning, the immune system is involved, and it responds to hormonal fluctuations. So, addressing inflammation is a significant factor for ongoing treatment.
Can endometriosis be treated?
Cure rates have been posted around 50% with combination surgery and endocrine medications but were also tied to a second surgery.
However, endometriosis is very treatable. Some mild-moderate cases can be largely treated by addressing the inflammation and hormones. Many people with mild endometriosis may go their whole lives without even knowing they had it.
Other potential treatments or strategies of mitigation that can be useful (in combination) to manage the pain are:
- Hormone therapy
- Heating pads
- Pain killers
- TENS Unit
- A change in diet
In Dr. Bala’s practice, she treats her patients with period pain and endometriosis similarly. Regardless of the diagnosis of endo or not, the treatment would likely address the inflammation and hormones first. In particular, elevated estrogen levels (which can potentially worsen period pain) and high levels of prostaglandins which are main factors of primary dysmenorrhea (aka period pain).
Dr. Tassone is one of the few endometriosis experts in the country that employs excisional surgery, hormonal balance, and anti-inflammation with diet, exercise, and supplements.
What are the symptoms?
Common symptoms include:
- abnormal or irregular periods
- painful periods
- painful bowel movements and urination
- painful sex
- bowel habit changes
- nausea and vomiting with your period
- or ther symptoms based on the location of the implants.
Remember that period pain is NOT normal so if you are experiencing any of these symptoms, check in with your doctor!
Is endometriosis genetic?
There is a genetic predisposition for endometriosis. There are also environmental and epigenetic factors; a small percentage of endometriosis is hereditary.
How would you explain the pain of endometriosis? What does endometriosis feel like?
This is hard to say because it feels different for everyone! But generally, endo warriors experience pain ranging from mild to severe with timing from a few days before the cycle to well into the cycle. Endometriosis does not correlate to the amount of pain. Stage 1 can be very painful and some with Stage 4 have no idea.
If YOU are someone working through endometriosis symptoms, we would absolutely love to hear from you. Consider joining our Inner Cycle community to have your voice and experiences heard and understood by a welcoming community of both menstruators and non-menstruators!
What are the stages of endometriosis?
There are 4 stages which are all diagnosed surgically:
The stage of endometriosis is based on the: location, amount, depth and size of the endometrial tissue. It involves the extent of the spread of the tissue, how much of the pelvic organs are involved, how much pelvic adhesions there are, and blockage of the fallopian tubes. As stated above, the stages don’t necessarily reflect how much pain the person may experience.
Adhesions are the result of inflammatory reactions forming a band between the organs and are more like scar tissue. "Lesions" are the patches of endometriosis tissue itself.
How does an OBGYN test for endometriosis?
Your OB/GYN may do a pelvic exam, ultrasound, MRI, and/or laparoscopy. Though, as stated, if you haven't had surgery (aka the laparoscopy) endometriosis is only suspected.
“I have severe period pain and think I may have endometriosis. My doctor tells me that it's just period pain, what advice would you give me here?”
The unfortunate thing about endometriosis is that getting the diagnosis is difficult.
It requires surgical excision and tissue diagnosis to confirm diagnosis due to the added challenge that you can’t determine if it’s endometriosis solely based on imagery. Gynecologic surgeons are the ones making this definitive diagnosis, so if you haven't had surgery, endometriosis can only be suspected.
Can you see endometriosis on an ultrasound?
If it’s a deep implant or is causing an ovarian cyst you may be able to, although it depends on sizes and depths of invasion. But in milder cases, diagnosis with ultrasound may prove difficult.
How does endometriosis affect fertility and my ability to get pregnant?
This is something that we talked about during our IG Live with Dr. Bala!
About 75% of people with endometriosis can achieve pregnancy. Severe endometriosis can have adhesions and may cause issues with the fallopian tubes. Removing the endometrial lesions is possible and should be done by an experienced surgeon, but new implants could grow back.
Another piece is estrogen – if estrogen metabolism is a bit skewed, that can also affect reproductive abilities. Dr. Bala made it clear that it’s not as clear cut as “you have endo, which automatically means you’ll have trouble getting pregnant”.
Does endometriosis cause weight gain?
Not directly. But excess inflammation and excess hormones (like estrogen) may cause weight gain.
Is it possible to have PCOS and endo?
Unfortunately yes, they’re not mutually exclusive (aka they can be experienced at the same time).
Can an IUD cause endometriosis?
According to Dr. Bala, no it cannot.
What are the risk factors of endometriosis?
- Giving birth for the first time after 30
- Never being pregnant
- Family history
- Immune disorders
- Structural abnormalities of uterus/tubes
- Heavy bleeding
- Short cycles (less than 27 days)
- Bleeding for more than 7 days at a time
However, these are different depending on where you look and the body of the patient.
What causes postmenopausal endometriosis?
Postmenopausal endometriosis is a bit more complex than premenopausal endometriosis since it’s still unclear as to whether or not it’s due to recurrence, due to a continuation of a previous disease, or due to a de novo condition.
Excess estrogen, in general, is associated with endometriosis. As menopause occurs, estrogen production levels change in the ovaries which should also be considered.
How common is endometriosis among teens?
It’s likely more prevalent than we as doctors are even aware of. It can take approximately 4-11 years to get the diagnosis. In part, due to misdiagnosis but also due to the fact that confirmation is done through surgical excision so younger people may be negated from proper diagnosis and treatment.
How often does a young menstruator need to be seen by their gynecologist?
If you have a period that’s regular, relatively pain free, not too heavy, and with no other symptoms, then you only need to go in for pelvic exams and “well woman” exams. During these visits they may do cervical cancer screenings.
Thank you for taking the time to read this and educate yourself on endometriosis.
Although March is Endo Awareness Month, we need to spread reliable information all year around. More research needs to be done to fully understand the complexity, and full-body effects that this systemic disease has on people.
If you are struggling with severe period pain yourself, or any of the listed symptoms, we definitely recommend checking in with your doctor!