Endometriosis is a disorder where tissue that shares similarities with what lines the inside of the uterus (endometrium) grows outside of the uterus. It's hard for people who don't live with endometriosis to understand just how debilitating and even isolating the condition can be. Yes, some people have more mild cases and less pain, but for many women with endometriosis, life is impacted in a major way, including when they are ready to become pregnant.
Here's what I want you to know—endometriosis doesn't automatically mean you can't get pregnant, and you aren't alone. Even though it can make getting pregnant more difficult, many women can conceive and have healthy babies.
In this article, I'll share how and why endometriosis can impact fertility and pregnancy and what steps you can take to support conception.
What is Endometriosis?
To start, let's discuss what endometriosis is. Endometriosis is a complex (and unfortunately not well understood) condition where tissue that is responsive to the hormone changes of the menstrual cycle grows outside the uterus, causing pain, infertility, and other health problems. Because the tissue responds to the signals to grow and bleed, it can lead to the body building scar tissue, which is referred to as adhesions.
The tissue growth occurs primarily in the pelvic area, including the bladder, bowel, deep pelvic nerves, ureter. In some cases, it is also found on the abdominal wall, diaphragm, lungs, pericardium, and even the brain (though this is rare).
Research suggests that 10 to 15 percent of women in their reproductive years have endometriosis (although estimates vary, and many women are misdiagnosed for years). The causes of endometriosis are unknown, but there are several theories about how it develops (more on this below).
@drjolenebrighten Reply to @doina this is the gold standard of testing #endometriosis #endometriosisawareness #periodproblems #painfulperiods #period #doctorsoftiktok #physician #dyspareunia #dysmenorrhea #hormones ♬ In My Mind – Lyn Lapid
Symptoms of Endometriosis Can Vary
The symptoms of endometriosis can vary between people. Some women experience very few symptoms (up to 25 percent have no symptoms at all), while others have severe pain. The most common symptoms of endometriosis include:
- Intensely painful periods (but the pain can also last beyond your period)
- Painful sex
- Pain with bowel movements, urination, or even inserting a tampon
- Heavy periods
- Chronic pain in the back, lower abdomen, or pelvis
- Diarrhea, nausea, constipation, bloating (which are also irritable bowel syndrome symptoms)
- Bleeding between periods
Since so many of these symptoms can look like other health conditions and women’s pain is often ignored in medicine, endometriosis is often misdiagnosed. Studies suggest it takes an average of 8 to 10 years for a proper diagnosis. I've treated many women who've been told they have irritable bowel syndrome (IBS) or other conditions when they actually had endometriosis all along.
The extra tissue can bleed and even make its own hormones, leading to pain, inflammation, and scar tissue. Scar tissue and inflammation lead to adhesions, which connect tissue that are usually separate from each other, leading to pain and impairing the function of the organs where it is located.
What Causes Endometriosis?
The cause of endometriosis is not entirely understood. It's likely multifactorial, with genetics as well as environmental factors playing a role. As of right now, we don’t know the definitive cause and there is a lot of debate as to why it occurs. There are several theories about how it develops, including:
- Retrograde menstruation. According to this theory, when a woman has her period, the blood and endometrial cells flow backward through the fallopian tubes and pelvic cavity, carrying endometrial tissues with it.
This is one of the most popular theories about the cause of endometriosis, although it's still not completely clear. Several studies found that retrograde menstruation occurs in 76%–90% of women (even those without endometriosis), but women with endometriosis have more retrograde menstrual flow than women without. But it begs the question—is this really the cause of endometriosis or is it a symptom associated with it.
- Surgery. Endometriosis may develop after surgery when cells from the endometrium could be transferred to the surgical site (like a c-section or hysterectomy). But many women with endometriosis have never had surgery.
- Immune disorder. This suggests that endometriosis may be caused by a problem with the immune system, as some research suggests that many women with endometriosis also have autoimmune conditions. The immune system should also remove cells from areas where they don’t belong, but this may not happen in women with endometriosis.
- Inflammation and oxidative stress. Inflammatory cytokines (signaling molecules for inflammation) and increased levels of free radicals are linked to endometriosis. At this time we are not sure if endometriosis causes inflammation or if increased inflammation is a risk factor for developing it.
- Hormones. Endometriosis is closely connected to hormones, especially estrogen (and estrogen dominance can make it worse). Estrogen can increase the proliferation of endometrial tissue, but that doesn’t mean high estrogen levels cause it.
Interestingly, research also links external sources of hormone disruptors to endometriosis. Bisphenol A (BPA), a chemical found in food packaging and on receipt paper, can worsen endometriosis because BPA can mimic estrogen in the body.
These are only some of the more common theories behind the causes of endometriosis. As more research comes out, especially related to environmental aspects of endometriosis, I expect (and hope) we will have a better understanding.
How Does Endometriosis Affect Fertility?
Before I dive into this section—since it can seem a little doom and gloom—I want to reiterate again that many women with endometriosis can get pregnant. In some cases, it can make it more complicated.
Up to half of women with infertility have endometriosis, and 30 to 50% with endometriosis have difficulty conceiving on their own, although researchers don't entirely understand why. There's clearly a connection between hormones, inflammation, and possibly an immune component. But here are some of the most obvious ways it can impact fertility.
Stages of Endometriosis
The stages of endometriosis are stage I through stage IV, where stage I is the mildest and stage IV is the most severe. They are ranked on location, the number of lesions, depth, cysts, adhesions, or blockages.
- Stage I: Few small lesions or wounds with minimal scar tissue, if any. Stage I endometriosis is localized to organs and tissue close to your uterus.
- Stage II: More lesions and some scarring may be present. Lesions may be more deeply implanted than you might see with Stage I.
- Stage III: Many lesions are embedded deep in the tissue, possibly accompanied by scarring and ovarian cysts.
- Stage IV: Expansive, deeply rooted lesions are present with lots of scar tissue and cysts on at least one ovary.
There's also an endometrial rating system specific to fertility called the endometriosis fertility index (EFI). The EFI looks at the reproductive organs and takes into account previous pregnancies, stage of endometriosis, how long someone’s been trying to get pregnant, and their age. This score is considered a better predictor of fertility than only using staging and is often used after any surgical treatments for endometriosis.
Studies suggest that while there does seem to be a link between more severe cases of endometriosis and infertility, it's not the only predictor. Further, the stage and severity aren't always linked to better or worse symptoms because each person has such a different response within their body.
Damaged or Blocked Fallopian Tubes Impact Fertility
Endometriosis can cause scarring and adhesions around the ovaries or fallopian tubes, affecting fertility. When fallopian tubes are blocked or damaged, it impacts the ability of the egg to travel to the fallopian tube for fertilization. Other areas of the reproductive system can also have scar tissue or adhesions that affects their functions. Sometimes, surgery can correct the issue, or pregnancy can still be possible with IVF in more severe cases.
Inflammation and the Immune System
Endometriosis is a condition associated with chronic inflammation and immune system dysregulation, and both can impact the ability to get pregnant. Inflammation can adversely affect reproductive hormones, egg quality, and implantation for people with endometriosis, making it harder to get pregnant.
Similar to damage to the fallopian tube, uterine scarring can interfere with the ability to get pregnant because the scar tissue interferes with the normal function of the lining of the uterus (where the fertilized egg implants), although this is less common.
Is it Possible to Get Pregnant With Endometriosis?
Yes, in many cases it is possible to get pregnant with endometriosis with or without assistance. In fact, many women with endometriosis do conceive and carry healthy pregnancies to term.
Can Endometriosis Affect Pregnancy?
If you have endometriosis and get pregnant, there is a chance that the condition can affect your pregnancy. Endo has been linked to a higher risk of tubal pregnancies, miscarriage, preterm birth, and higher c-section rates. There's also a relatively rare but higher-than-normal risk of complications like uterine rupture or preterm birth. It is important to meet with your provider when you confirm pregnancy in order to ensure you’re getting the best care for your individual needs.
Treatments for Endometriosis
There are several medical treatments for endometriosis which I'll share below. I've seen great success in natural support for endometriosis (which you can learn about here). Still, some women find relief from medical or surgical interventions or even a combination of both. It all depends on your personal experience.
Medical and surgical treatments include:
- Hormonal therapy
- Pain medications
- Anti-inflammatory medications
- Laparoscopic surgery
Endometrial ablation and hysterectomy are still offered, but these are not actual treatments of endometriosis since they only address the uterus (or in the case of a total hysterectomy, the uterus, ovaries, and fallopian tubes). Since endometriosis by definition is lesions outside of the uterus, treating just the uterus isn’t sufficient in the vast majority of cases. In addition, this will make it impossible to become pregnant.
Tips for Getting Pregnant with Endometriosis
Since endometriosis and conception require a little more TLC, here are a few tips to support your journey:
Start a Prenatal
Every woman seeking to become pregnant in the next year should consider beginning a quality prenatal. Because inflammation and immune system dysregulation can be factors with endometriosis, there may be additional nutrients that are helpful. For example, antioxidants like vitamin C, E, and selenium (which supports glutathione production) are necessary for free radical protection of cells. To learn more about what to look for in a prenatal vitamin visit this article.
Adjust Your Lifestyle
Lifestyle factors can go a long way to support both the symptoms of endometriosis and the root cause. This section can be an entire article (and it is here), but consider addressing some of these habits (and these are a good idea for anyone trying to become pregnant, not just those with endometriosis):
- Reduce inflammation through a nutrient-dense diet filled with brightly colored fruits and veggies, fiber-rich carbs, and healthy fats like omega-3s. Extra fiber also supports estrogen detoxification which is critical for any estrogen-dominant conditions like endometriosis and keeps your gut bacteria happy. You can grab this free meal plan and recipe guide to help you get started.
- Consider anti-inflammatory and pain-supporting supplements like turmeric or melatonin.
Reduce Exposure to Endocrine Disruptors
Limit your exposure to endocrine disruptors that could mimic estrogen and make symptoms worse. This means avoiding plastic bottles or food containers (glass or stainless steel are best), canned goods that aren't labeled BPA-free, and even avoiding handling receipts.
You can learn more here about how endocrine disrupting chemicals affect your hormones, how to avoid them, and where they lurk.
Rest and recharge to manage stress. Stress is connected to everything, and it's a vicious cycle since living with endometriosis while trying to get pregnant can be incredibly stressful. Movement is good for you but be gentle with your body when needed. Take walks when you can, and find a stress-reduction technique that brings you peace, whether journaling, dancing, or taking a long bath.
Stress can negatively impact hormones and even in the absence of endometriosis, it can make it difficult to get pregnant.
Consult A Doctor Early
Although the typical advice is that you don't need to seek help with fertility until you've tried to get pregnant for at least a year, the guidance is different if you have endometriosis. Consider talking to your health care provider as soon as you decide you want to become pregnant. Even an open conversation could help you feel better. If you don't feel like your OB has a deep understanding of endometriosis, it also may be worth finding someone near you who specializes in the condition.
Consider Assisted Conception
If you have endometriosis and you don't become pregnant naturally, you have options to explore, including:
- Fertility drugs
- Surgery to remove scar tissue
- Intrauterine insemination (IUI)
- Assisted reproductive technology (ART)
If you’re unable to conceive within 6 months of trying, meet with a reproductive specialist to learn if these options are right for you.
Endometriosis and Pregnancy: Key Takeaways
Endometriosis is a condition that can make it harder to get pregnant, but it's still possible. Lifestyle changes, coupled with medical treatments when needed, can increase the chances of pregnancy.
If you're struggling to conceive and have endometriosis, talk to your doctor sooner rather than later. There are many options available for couples who want to have a baby.
And most of all, let yourself feel any and all emotions you need to. Living with endometriosis is hard, and the challenges with fertility can make the psychological load feel even heavier. You aren't alone in the journey, and healing is absolutely possible.
- Parasar P, Ozcan P, Terry KL. Endometriosis: Epidemiology, Diagnosis and Clinical Management. Curr Obstet Gynecol Rep. 2017. 6(1). 34-41.
- Bulun SE, Yilmaz BD, Sison C, et al. Endometriosis. Endocr Rev. 2019. 40(4). 1048-1079.
- Giudice LC, Kao LC. Endometriosis. Lancet. 2004. 364(9447). 1789-1799.
- Pugsley Z, Ballard K.. Management of endometriosis in general practice: the pathway to diagnosis. Br J Gen Pract. 2007. 57(539). 470-476.
- El-Kader AI, Gonied AS, Lotfy Mohamed M, Lotfy Mohamed S. Impact of Endometriosis-Related Adhesions on Quality of Life among Infertile Women. Int J Fertil Steril. 2019. 13(1). 72-76.
- Bulletti C, Coccia ME, Battistoni S, Borini A.. Endometriosis and infertility. J Assist Reprod Genet. 2010. 27(8). 441-447.
- Sasson IE, Taylor HS. Stem cells and the pathogenesis of endometriosis. Ann N Y Acad Sci. 2008. 1127. 106-115.
- Sourial S, Tempest N, Hapangama DK. Theories on the pathogenesis of endometriosis. International Journal of Reproductive Medicine 2014. 2014. 179515.
- Augoulea, A., Alexandrou, A., Creatsa, M. et al. Pathogenesis of endometriosis: the role of genetics, inflammation and oxidative stress. Arch Gynecol Obstet 286. 2012. 286. 99-103.
- Macer ML, Taylor HS. Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility.. Obstet Gynecol Clin North Am. 2012. 39(4). 535-549.
- Guzick DS, Silliman NP, Adamson GD, et al. Prediction of pregnancy in infertile women based on the American Society for Reproductive Medicine's revised classification of endometriosis. Fertil Steril. 1997. 67(5). 822-829.
- Adamson GD, Pasta DJ. Endometriosis fertility index: the new, validated endometriosis staging system. Fertil Steril. 2010. 94(5). 1609-1615.
- Tomassetti C, Geysenbergh B, Meuleman C, Timmerman D, Fieuws S, D'Hooghe T. External validation of the endometriosis fertility index (EFI) staging system for predicting non-ART pregnancy after endometriosis surgery. Hum Reprod. 2013. 28(5). 1280-1288.
- Ahn SH, Monsanto SP, Miller C, Singh SS, Thomas R, Tayade C. Pathophysiology and Immune Dysfunction in Endometriosis. Biomed Res Int. 2015. 795976.
- Mohammed Rasheed HA, Hamid P.. Inflammation to Infertility: Panoramic View on Endometriosis. Cureus. 2020. 12(11). e11516.