Understanding Fatigue and Endometriosis: A Practical No-Nonsense Guide
Fatigue is a common symptom these days, but for those living with endometriosis, it can be
particularly challenging. While it’s not one of the primary symptoms of endometriosis, fatigue is
often reported by women who have endo. What’s the relationship? What are some potential
causes and what can you do to regain some lasting energy, without hocus pocus “cures”, more
coffee, or energy drinks?
If you’re not sure if you have endometriosis, please remember that not all symptoms are
directly related to or caused by endo. While many can be related, something else can be
wrong. For example, you can have anemia from various causes, adrenal or thyroid disease and
many other conditions, some of which can be serious. Chronic fatigue is a very challenging
condition to treat but before treatment you first must get to the root cause or causes. This
requires either a mainstream internal medicine or family medicine doctor that is going to
carefully explore every angle with you. Most will just get basis tests and not spend much time
with you, because their time is limited by today’s healthcare mess. Alternatively, seek out an
integrative and/or functional medicine physician who is trained to approach all disease by
tracing it down to the root cause. This is critical and not just a matter of getting a few blood
tests. If you’re “lucky” something obvious might pop up on basic testing. But most of the time
it’s not that straightforward. Do it right!
If you already know you have endo and are experiencing fatigue along with other symptoms of
endometriosis, make sure your endo specialist is aware of this. They can help evaluate how root
causes may be in play that are directly related to endo or adenomyosis, provide an accurate
diagnosis or diagnoses, and develop a personalized treatment plan. Everyone is not the same.
Understanding Fatigue and Endometriosis:
The Impact of Chronic Pain:
Endometriosis, in most, is characterized by chronic pelvic pain, which can significantly impact
quality of life. Living with constant pain can be exhausting both physically and mentally, leading
to fatigue. Additionally, the stress and emotional burden associated with chronic pain can
further contribute to fatigue.
Hormonal Imbalances:
Hormonal imbalances play a role in the development and progression of endometriosis.
Estrogen, in particular, is thought to promote the growth of endometrial tissue outside the
uterus. Fluctuations in estrogen levels throughout the menstrual cycle can result in fatigue and
tiredness. Furthermore, if you are in a hormone balancing program of some kind, excess
progesterone can definitely cause fatigue. “Balancing hormones” requires an expert hand
because it is like conducting a symphony orchestra, as opposed to throwing in a few hormones
to see what happens. Beyond that, it is not just a matter of balancing estrogen and
progesterone. For example, people with endometriosis are six times more likely to have an
underactive thyroid. So, again, it’s a symphony orchestra, not a small band that needs
conducting for best results.
Sleep Disturbances:
Endometriosis often leads to sleep disturbances due to pain, discomfort, and hormonal
imbalances. Insufficient or poor-quality sleep can easily leave one feeling fatigued during the
day. It is essential to prioritize sleep hygiene and seek strategies to improve sleep, such as
creating a relaxing bedtime routine and ensuring a comfortable sleep environment.
Anemia:
Endometriosis and adenomyosis can lead to heavy or prolonged menstrual and inter-menstrual
bleeding, which can result in iron deficiency anemia. Iron is vital for carrying oxygen to the
body’s tissues, and when its levels are low, fatigue and weakness can occur. Bringing iron levels
up may mean taking iron supplements for a while or it can as simple as adjusting your diet to
include iron-rich foods, like leafy veggies.
Inflammation and Immune Dysfunction:
Endometriosis is associated with chronic inflammation and immune system dysfunction. The
inflammatory response and immune activation can definitely contribute to fatigue. Strategies
that reduce inflammation, such as a healthy diet rich in anti-inflammatory foods, regular
exercise, and stress management techniques, may help alleviate fatigue symptoms.
Management Strategies for Fatigue:
Pain Management:
Effective pain management is essential for reducing fatigue associated with endometriosis. Your
doctor may recommend over-the-counter pain relievers, such as nonsteroidal anti-
inflammatory drugs (NSAIDs), to help alleviate pain and inflammation. Hormonal treatments,
such as birth control pills or hormonal intrauterine devices (IUDs), can also be prescribed to
regulate hormone levels and reduce pain. Of course, narcotics are an option but that can lead
to feeling loopy and fatigued, defeating the purpose. Gabapentin and similar drugs can help
with central sensitization and might be used just for transition while you reduce pelvic floor
inflammation triggers using multi-modality therapies. Pelvic floor physical therapy is critical.
Integrative modalities like acupuncture and acupressure can help as well. Endo excision surgery
is always part of the conversation and requires an expert to minimize the risk of multiple repeat
surgeries.
Lifestyle Modifications:
a. Regular Exercise: Engaging in regular exercise can improve energy levels and reduce fatigue.
It might be counter-intuitive to go out and exercise if you are already feeling beat, it works.
Even low-impact activities like walking, swimming, or practicing yoga can have a positive
impact. Start with light exercises and gradually increase intensity based on your comfort level.
Consult with a trainer or a physical therapist to determine the best exercise plan for you.
b. Balanced Diet: A well-balanced anti-inflammatory antioxidant diet plays a crucial role in
managing fatigue and supporting overall health. Incorporate a variety of fruits, vegetables,
whole grains (whole food plant-based diet), and lean proteins into your meals. These provide
essential nutrients which work together, including iron and other vitamins, which can help
combat anemia-related fatigue. Limiting processed foods, sugary snacks, and caffeine can also
promote more stable energy levels throughout the day. Given that endo is inflammatory and
the damage that is caused is based on reactive oxygen species oxidation, it is critical to keep
inflammation low and anti-oxidation high. Your body is a very complex laboratory which also
works like a symphony orchestra when tuned properly. It needs the right fuel, and an expert
nutritional “conductor” can help select and tune up the right plan for you.
c. Adequate Hydration: Drinking enough water throughout the day is important for maintaining
optimal energy levels. Dehydration can exacerbate fatigue, so aim to consume at least eight
glasses of water daily. Carry a refillable water bottle with you as a reminder to stay hydrated.
This is not directly related to endo but is a forgotten baseline critical need to maintain a slightly
alkaline, antioxidant and anti-inflammatory status.
Stress Management:
a. Mindfulness and Relaxation Techniques: Practicing mindfulness meditation, deep breathing
exercises, or progressive muscle relaxation can help reduce stress and improve energy levels.
Find a quiet and comfortable space and allocate a few minutes each day for relaxation
exercises. There is a lot of choose from including various forms of yoga, Tai Chi, Qigong,
mindfulness, biofeedback techniques like Heart Math, meditation and so on. These days there
are various mobile apps and online resources available to guide you through some these
techniques. But it is important to select something that resonates with you. If you are not “into
it”, it won’t help.
b. Engage in Activities You Enjoy: Participating in activities that bring you joy, and relaxation can
help alleviate stress and combat fatigue. Whether it’s reading, listening to music, taking a warm
bath, or spending time in nature, make time for activities that help you unwind and recharge.
Do something that makes you laugh. This all has psycho-biological proof behind it.
c. Prioritize Self-Care: Self-care is essential in managing fatigue and overall well-being. Set aside
regular time for self-care activities such as taking a bubble bath, getting a massage, practicing
gentle yoga, or indulging in a hobby you love. Remember that self-care looks different for
everyone, so find activities that resonate with you and make them a priority.
Support Networks:
a. Seek Emotional Support: Living with endometriosis is emotionally challenging. Connecting
with others who share similar experiences through support groups or online communities can
provide valuable emotional support, validation, and information. Sharing experiences, seeking
advice, and knowing you are not alone can help in managing fatigue and the overall impact of
endometriosis. Everyone is different and some of the solutions you hear about may not work
for you, but it is good to hear about them. The only prudent caveat might be that if something
sounds too good to be true in this setting, check it out through trusted credible sources and
your endo specialist.
b. Involve Loved Ones: Educate your loved ones about endometriosis and how it affects your
energy levels. Communicate your needs and limitations so that they can offer support and
understanding. Having a strong support system can make a significant difference in managing
fatigue and coping with the challenges of endometriosis.
c. Consider Counseling: If fatigue and the emotional impact of endometriosis are strongly
impacting your mental well-being, consider seeking professional counseling or therapy.
Everyone needs help at some point in their life. A mental health professional can provide
guidance, coping strategies, and a safe space to process your emotions.
Conclusion:
By implementing these management strategies, you can better cope with fatigue and improve
your quality of life. Remember that everyone’s experience with endometriosis is unique, and it
may take time to find the strategies that work best for you. Seek support from an
endometriosis specialist and other practitioners noted above, make lifestyle modifications,
prioritize self-care, and build a strong support network. Ideally, seek out an endo specialist who
is not only a surgeon but is also either trained in integrative holistic care or has a team that
provides these valuable support and treatment options. With the right tools and resources, you
can more effectively manage fatigue and navigate the challenges of living with endometriosis.
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Nnoaham KE, Hummelshoj L, Kennedy SH, et al. World Endometriosis Research Foundation
Women’s Health Symptom Survey Consortium. World Endometriosis Research Foundation
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Hadfield R, Mardon H, Barlow D, Kennedy S. Delay in the diagnosis of endometriosis: a survey of
women from the USA and the UK. Hum Reprod. 1996;11(4):878-880.
Vercellini P, Vigano’ P, Somigliana E, et al. Endometriosis: pathogenesis and treatment. Nat Rev
Endocrinol. 2014;10(5):261-275.
Ferrero S, Esposito F, Abbamonte LH, et al. Quality of life in women with endometriosis: a
narrative overview. Minerva Ginecol. 2019;71(6):464-478.
Mathias SD, Kuppermann M, Liberman RF, et al. Chronic pelvic pain: prevalence, health-related
quality of life, and economic correlates. Obstet Gynecol. 1996;87(3):321-327.
Hartwell D, Jones K, Hinshaw K, et al. Sleep disturbances and fatigue in women with
endometriosis. Am J Obstet Gynecol. 2019;221(6):638.e1-638.e14.
Vitale SG, La Rosa VL, Rapisarda AMC, et al. Impact of endometriosis on quality of life and
psychological well-being. J Psychosom Obstet Gynaecol. 2017;38(4):317-319.
Giudice LC. Clinical practice. Endometriosis. N Engl J Med. 2010;362(25):2389-2398.
La Rosa VL, De Franciscis P, Barra F, et al. Sleep quality in women with endometriosis: a
systematic review and meta-analysis. J Clin Med. 2020;9(6):1834.
Panir K, Schjenken JE, Robertson SA, et al. Immune interactions in endometriosis. Expert Rev
Clin Immunol. 2019;15(6):649-662.
Koga K, Takamura M, Fujii T, et al. Dysfunction of innate immune system in the development of
endometriosis. Reprod Med Biol. 2018;17(1):49-55.
Agarwal SK, Chapron C, Giudice LC, et al. Clinical diagnosis of endometriosis: a call to action. Am
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How Do Endo Fertility Issues Impact the Mental Health of a Person?
Endometriosis (endo) can cause many issues. Endometriosis patients may have difficulty becoming pregnant or maintaining a full-term pregnancy. Up to 70% of women with endometriosis get pregnant without medical treatment. However, 30 to 50% of patients with endo experience fertility issues and may need endometriosis fertility treatments or surgery. Up to 50% of all women with infertility have endometriosis. According to the abstract in a study published in the International Journal of Women’s Health:
“The most common clinical signs of endometriosis are menstrual irregularities, chronic pelvic pain (CPP), dysmenorrhea, dyspareunia and infertility. Symptoms of endometriosis often affect psychological and social functioning of patients. For this reason, endometriosis is considered as a disabling condition that may significantly compromise social relationships, sexuality and mental health.”
Read More: How Do Endo Fertility Issues Impact the Mental Health of a Person?
Why Are Women Impacted Emotionally By Reproductive Disorders?
A plethora of reasons exists as to why women can experience deep emotional impact by a diagnosis of a reproductive disorder or a condition that could cause issues with fertility. Some women already worry about getting pregnant anyway, so an endometriosis diagnosis surely doesn’t help. Here’s a shortlist of some reasons reproductive issues can affect the emotional health of women with endometriosis:
- Pressure to conceive right away
- Worries about each stage of the pregnancy, from implantation to delivery
- Pressured to have a child, even if the person is unsure or not ready
- Possible medical interventions, such as IVF
- Stress and emotional drainage that can result from endometriosis fertility treatments
- Possible laparoscopy endometriosis surgery
Multiple studies demonstrate that a woman’s ability to conceive and bear a child plays a big part in her emotional health and self-esteem. While many women don’t want to have children, a large portion does. But, they might not be ready for a baby when they receive their endometriosis diagnosis. According to a study out of the Iranian Journal of Reproductive Medicine:
“While infertility is not a disease, it and its treatment can affect all aspects of people’s lives, which can cause various psychological-emotional disorders or consequences including turmoil, frustration, depression, anxiety, hopelessness, guilt, and feelings of worthlessness in life.”
Read More: How Does Endometriosis Cause Infertility?
Endometriosis Patients with Fertility Issues Need Emotional Support
Most endometriosis patients with fertility issues benefit by having a mental health provider as part of their multidisciplinary team.
Endometriosis impacts many facets of a person’s life. A recent study concluded that:
“Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.”
All Endometriosis Patients Could Benefit From Emotional Support
Many endometriosis patients with fertility issues express no desire to have children. Therefore, some women are unaffected by infertility that might arise from endo. However, it’s essential to keep these women in mind because their feelings matter, too. Perhaps some did not want to have kids now but were hoping to someday in the future? Or maybe they are just not with the right person to have children with them?
Whatever the case may be, it’s significant that healthcare providers do not overlook a patient’s emotional needs, even if they say it doesn’t bother them if they cannot have kids. Perhaps a person in this situation may not need as intense emotional support, but they should see a mental health provider have a chance to talk about these feelings and think them through. Some interventions can help one conceive or be ready to conceive even with an endometriosis diagnosis. However, it’s significant to remember that the further the disease has progressed, the more complex it is to treat it to regain fertility. Therefore, when you are unsure if you want to have a baby, it’s still wise to have all the lesions removed as soon as you can and conduct proper follow-up.
Seeking a Mental Health Provider Experienced With Endometriosis
Endometriosis is a complex and often misunderstood disease. Therefore, women who battle this condition daily, especially those with fertility issues, require a mental health professional familiar with this inflammatory disorder.
Endometriosis encompasses many domains of a patient’s life, and fertility issues are not the only things that impact women’s emotional health. When seeking out a professional, it’s critical to find someone familiar with the disease and its emotional impact on patients.
Importance of Friends and Family
In addition to adding a robust mental health provider to your team, it’s also essential that you seek support from your loved ones. Please encourage them to attend appointments with you to have a better understanding of the condition. When the people closest to you can comprehend the emotional roller-coaster accompanying infertility, they will be better prepared to support you emotionally.
When a patient receives a diagnosis such as endometriosis, pain management, and other care items often become the priority. Therefore, it can be easy to overlook the emotional aspect of this condition, especially in someone with fertility issues. This is why it’s essential to do your research and find an experienced endometriosis expert to head up your team.
Do You Have Fertility Issues Caused By Endometriosis?
We want to hear from you. What are your thoughts on the emotional challenges? Do you have a solid mental health provider on your team? Leave your responses in the comments below.
Impact of Living with Endometriosis on Mental Health
(All research studies mentioned in this article about the impact of endometriosis on mental health enrolled people with assigned female gender at birth. However, to be inclusive to all people with endo, we use people throughout the article.)
Being diagnosed with endometriosis (endo) and living with it can bring up a lot of emotions. It can mean making space for changes that you may never have predicted or accounted for. Endometriosis impacts nearly 200 million people worldwide, but there is pernicious misinformation and a lack of awareness and understanding among the medical community and the larger society. This misinformation and lack of awareness stand in the way of receiving a timely diagnosis.
It takes, on average, over seven years for a person who has endometriosis to get a diagnosis. Essentially, this means experiencing intense pain, feeling unheard over and over, and being gaslit at a systemic level for at least seven years.
In most countries, managing the pain and heavy periods remain the first line of treatment for endometriosis. If one is lucky, they can access endometriosis excision surgery. However, the impact of endometriosis goes beyond just the physical. The effect of endometriosis on mental health and the emotional wellbeing of the person is enormous.
Link Between Endometriosis Pain and Mental Health
The mental health struggles of living with endometriosis vary from person to person. The debilitating chronic endometriosis pain, one of the most common symptoms, is a critical factor that impacts the quality of life and mental health. Along with the cyclic pelvic pain, one may also experience other types of pain in varying degrees:
- Non-menstrual pelvic pain
- Pain during ovulation, urination, and/or bowel movements
- Pain during sex
- Sciatic pain
- Pain post and during orgasms
- Widespread full-body pain.
Research published in the International Journal of Women’s Health Health looked at the link between common symptoms of endometriosis and mental wellbeing.
It found that a person experiencing chronic pelvic pain (CPP) is likely to feel higher levels of anxiety and depression, which can further amplify the perception and severity of pain, thus placing them in a vicious circle of physical and psychological distress.
Figure 1: The vicious circle of chronic pelvic pain and psychological disease.
Pelvic Pain Causes Further Effects of Endometriosis on Mental Health
A study found that endometriosis patients with pelvic pain had poorer quality of life and mental health than those with asymptomatic endometriosis. It also showed that non-menstrual pelvic pain impacts all the variables of a person’s life. Thus, the study emphasized psychological interventions as an essential aspect of the endometriosis treatment plan and pain management treatments and interventions.
In another meta-analysis of 99,614 people from 24 different studies, researchers found that chronic pelvic pain was a primary factor contributing to the higher rates of depression in patients with endometriosis. This study emphasized that treating this kind of depression with antidepressants without the efforts towards managing the chronic pain would indeed be ineffective.
The Emotional Reality of Endometriosis
Studies have tried to understand the impact and management of endometriosis within the medical healthcare system. But still, the health system has largely overlooked the effect of endometriosis on mental health.
Living with endometriosis can make daily activities a struggle, mainly due to the unpredictability of pain and fatigue. The struggle makes some tasks nearly impossible. These tasks can include planning, working, socializing, exercising, eating, or even basics like cooking, cleaning, and bathing. This inability fuels guilt and anxiety. Furthermore, the debilitating pain being reduced to “just a bad period” or “psychosomatic” often leaves one feeling gaslit, isolated, depressed, and sometimes suicidal.
This distress increases due to the lack of systemic and psychosocial support. When the BBC spoke to 13,500 people (female assigned at birth) with endometriosis, more than 50% of the respondents felt suicidal ideations.
This is a battle
For someone living with chronic pain every day, even a short-lived moment of low pain brings ease, which allows one to hope for a future not controlled by pain. However, grief sets in quickly as fatigue and flare-ups follow. These changes make life with endometriosis incoherent and an inescapable dance between hope and grief. A Swedish study concluded that people living with painful endometriosis underwent a constant struggle for coherence in their lives. It emphasized that healthcare providers should validate this struggle by understanding the disease-related grief.
The anxiety around pain and health, the grief related to the future, the loneliness and isolation often bring up the feeling that chronic pain has monopolized one’s life. Endometriosis becomes the central point around which all decisions revolve. It takes away the body’s ability to be reliable and the capacity to feel safe within it. It often changes the way one views themselves and takes the world in.
One of the ways we feel safe in the world is by feeling safe in our bodies. Then what happens to our sense of safety when the body is a constant source of never-ending pain?
The Trauma of Endometriosis
Experts define trauma as the experience of being left alone with one’s pain. Endometriosis isn’t different. Having to constantly explain one’s pain to medical doctors, families, and friends and still not being believed is an isolating and traumatizing experience. For some, this experience of being gaslit gets stored in the body and pushes the nervous system into a hypervigilant state (Fight, Flight, Freeze).
This experience of trauma can bring up various responses, anger being one of them. The anger can be at the world, the state, the body, the systems, other people, or the pain. It becomes our protective mechanism in response to the powerlessness that one feels while coping with endometriosis.
The Way Forward
In treating endometriosis, it becomes necessary to consider its impact on mental health and provide psychosocial support to people with endometriosis and their families. Unlike the conventional medical belief that solely focuses on the physiological aspects, a multidisciplinary approach integrating the mind and the body is necessary.
A trauma-informed psychotherapist specialized in treating endometriosis, and chronic pain can be helpful. A therapist trained in chronic pain management understands endometriosis, related diagnoses, and its trauma. This understanding is an integral part of the healing process. Seeing the light at the end of the tunnel is complicated and sometimes impossible with pain. Verbalizing the pain, having the hardships validated, acknowledged, and believed can be an empowering experience. Just as people seek medical help for their physical symptoms, seeking help for mental health struggles is an integral part of the endometriosis journey. If therapy is hard to access, support groups for endometriosis can be a step forward. You should know that you are not alone in your experience, and you can have support. The supports that you get can be a lifeline to your mental health.
Author: Anindita Kundu, Trauma Psychotherapist.
How has endometriosis impacted your mental health? Have you considered working with a mental health specialist to help you?
