What is Endometriosis?
What is Endometriosis?
(The First “X” in Our Series on Female Medical Mysteries)
What is Endometriosis?
If you don’t know what this disease is, or how it can affect the lives of the people suffering from it, then you’re not alone. Most people don’t know what Endometriosis is, which is pretty surprising given that approximately 5-10% of women have it.1, 2
In this condition, endometrial tissue, the type of tissue that lines the uterus, grows elsewhere in the body, usually the pelvis. Endometrial tissue growths are often found on and around the ovaries, vagina, bowels, bladder, kidneys, and intestines. 1 2, 3, 4
When endometrial tissue grows where it doesn’t belong, this is Endometriosis or “Endo” for short. 1
Image: (1) 3
You might be thinking that this condition sounds odd, but wondering why it’s such a huge issue. The reason these growths cause problems is that, like the endometrial tissue in your uterus, they shed their lining or “bleed” on the same schedule as your menstrual cycle. These mini menses usually happen inside the abdominal cavity though, where they can’t release their discharge through the vagina, meaning that the discharge (menstrual blood) is trapped.
The presence of all these out-of-place endometrial cells and their discharge sets off a chain reaction in the body that leads to inflammation and the formation of scar tissue. The scarring and inflammation, in turn, usually cause pain, sometimes a lot of pain. 1, 2, 3, 4
As promised, here is your set of definitions for this post:
- Endometrium - The lining of the uterus.
- Fallopian Tube - The tube that connects the uterus to the ovaries; this is where eggs are fertilized.
- Hysterectomy - Surgical removal of the uterus.
- Infertility - Medically, infertility is defined as the inability to conceive after 12 or more months of regular, unprotected sex.
- Oophorectomy - Surgical removal of the ovaries (often included in a hysterectomy).
What are the symptoms?
First off, know that symptoms vary a lot from one case to the next, so diagnosing based on symptoms alone is not clinically correct. People with Endo may have all to none of the following symptoms:
Debilitating Period Pain
Cramps should not be so bad that they prevent you from living daily life, bad cramps like this could be a sign of Endo. 1, 5, 6
Teens who have debilitatingly painful periods that interfere with their daily lives have over a 50% chance of being diagnosed with Endometriosis. 1
Chronic Pelvic Pain
Pain that doesn’t ever really go away, or that repeatedly bothers you at different times during your cycle, could indicate scarring and inflammation from Endo. 1, 5
The longer this goes on without treatment, the more likely it is that your pelvic floor muscles and nerves could be damaged…possibly permanently. 1, 5
Painful Sexual Intercourse
The activities of sex can pull and stretch scar tissue in or near the reproductive organs, causing pain that is sometimes severe. 1, 5
Endo can also lead to pelvic floor muscle spasms, which can worsen with vaginal penetration, such as in sex. While the discomfort is mild for some, it can be deeper and more uncomfortable for others. This pain can happen during and/or after sex. 5, 6
Bottom line, sex should not be an inherently painful experience, and if it is for you, go talk with your doctor.
Endo can cause the bowel to kink, twist, or cause other intestinal issues. This can cause constipation, diarrhea, and/or bloating, depending on the individual. 1, 5
Sometimes these deformities can get bad enough that removal of organ tissue is required. Women can lose parts of their intestines, kidneys, and other organs to Endo if it’s bad enough. 4
Painful Bowel Movements and/or Urination
This is especially common among Endo sufferers when menstruating. 6 Just so you know, pain when pooping and/or peeing, even during a period, is not normal. You should talk with your doctor if this is your experience.
Having very heavy periods, and/or intermenstrual bleeding (bleeding in between periods), can be a sign of Endometriosis. 6
A normal period shouldn’t cause you to go through a maxi pad or tampon every 30 minutes. Please talk with your doctor if you’re experiencing very heavy periods.
Up to 50% of women who experience infertility have Endo, and fertility problems are extremely common among Endo sufferers. 5
The inflammation, scarring, and adhesions caused by the Endo growths can block the fallopian tubes, and even cause damage to sperm and/or eggs. The scarring and twisting of organs can make it difficult for sperm and egg to meet each other, or for an embryo implant in the uterus. 5
Many doctors encourage patients with Endo not to put off having children, since the condition may worsen with time and could make conception impossible at some point. 3
Why All the Suffering?!
Well, that was a lot! You may be wondering why so many women suffer from Endo without proper treatment. Shouldn't there be more awareness for this so that people can get treated earlier?
There are a couple of common reasons why so many women allow Endo to take over their lives.
Women are tough!
Because so many Endo sufferers just live with the pain and cope on their own, the average Endo diagnosis can be 6-10 years from disease onset. 5 This means the average Endo sufferer endures a lot of potentially unnecessary pain, yes, but it also means that by doing so, they let their disease worsen and potentially create irreversible damage.
If you have some or all of the symptoms listed above, and you think you might have Endometriosis, make an appointment to see your doctor about it. Period.
Women are tough because they have to be.
It’s not uncommon for women with Endo to be told that they are over-dramatizing their symptoms for attention, or so that they can get out of school, work, etc. 4
The idea that women would fake debilitating pain to get out of living is ABSOLUTELY RIDICULOUS. If your healthcare provider has even insinuated that they think you’re faking symptoms to get a doctor’s note, then find a new doctor. Period.
How is Endometriosis Diagnosed?
Moving on from our depressing barrage of information on symptoms and medical neglect, let’s talk diagnosis.
Diagnosing endometriosis is, unfortunately, a high-tech endeavor. A qualified health professional must lay eyes on the endometrial growth(s) before a diagnosis can be made. 1, 6
Possible methods of obtaining a diagnosis include:
- Pelvic exam
This is almost certainly where the process of getting diagnosed will start for most people. A pelvic exam is an exam from your doctor where they insert their hands or tools into the vagina and possibly uterus. This is your doctor taking a peek, in person, at what is going on up there. 6
An ultrasound can also be a good way to get “eyes” on endometrial growths that aren’t visible in a pelvic exam. Your doctor may choose to get a transducer ultrasound (the kind that goes over the tummy), a transvaginal one (the kind where they insert an ultrasound wand in the vagina), or both depending on the location and extent of possible endometrial growths. 6
An MRI can provide a detailed view of your insides that your doctor may wish to have before providing a diagnosis. This option is similar to an ultrasound, since it allows medical professionals to take a peek inside. The biggest difference between an MRI and an ultrasound is that an MRI provides a much clearer picture than an ultrasound. 6
Laparoscopy is a surgical procedure where the patient goes under general anesthesia, and the doctor makes tiny cuts in the abdomen so that they can use a small camera (laparoscope) and surgical tools to explore your insides and excise (remove) endometrial growths. Unfortunately, this is the most common way to diagnose Endometriosis because it’s the only way to get tissue samples for lab-verified identification if they cannot reach the growths through the vagina or other natural openings. 6
How is Endo Treated?
Finally. Let’s talk about how our sisters with Endo can get some help!
Since there is so much variability in disease presentation, symptoms, and severity, there are several treatment options for Endo. Women who only experience mild pain may opt to take a dose of tylenol and get on with their day, while others may require invasive surgery and/or hormonal treatments to stop the spread of their rogue Endo tissue. 6
Your doctor may recommend any of the following treatments if you have Endo:
- Pain Medication
Thank. God. If you’re in pain and you can’t manage on your own, ask your doctor for pain medication to help you cope. 6 You deserve to feel better!
- Hormone Therapy
Your doctor may recommend one of several hormonal drugs to help control the spread and severity of your Endometriosis. Usually this means hormonal contraception options that prevent menstrual cycles and therefore, prevent/slow the growth and spread of your Endometriosis. 1, 6
This is standard treatment for women who want to have children someday but aren’t yet ready. Stopping the hormonal cycle from continuing can make a huge difference in slowing the progression of the disease and therefore preserving fertility. 1
Surgical interventions for Endo are extremely common and many women with Endo will undergo as many as 10 or more surgeries for it in their life. 4
There are a range of surgical options available depending on your individual case and treatment goals, but they can basically be narrowed down to two types, Conservative Surgery and Hysterectomy. 6
- Conservative Surgery is the process of removing endometrial growths from the abdominal cavity, while preserving the reproductive organs. This is usually done for women with severe Endo who still want to try and preserve their fertility. 6
- Hysterectomy is the removal of the uterus, and often the ovaries too. While this used to be a standard treatment, many healthcare providers are opting to leave the reproductive organs intact unless there is no other option, or the patient has opted for their removal. 6
It’s important to note that even after surgery, Endo growths can return. This is why it’s so common for women with Endo to undergo several surgeries in their lifetime. 4
- Fertility Treatments
Endo-sufferers often undergo fertility treatments when they are trying to conceive. This is because of fertility problems, yes, but also to help women get pregnant as quickly as possible. You see, the more times a woman ovulates, the more opportunity the disease has to progress in her body.
Possible fertility treatments that can be used to help speed up the conception timeline include stimulating the ovaries to produce more eggs, or even in vitro fertilization. The options available to you depend on your individual case and your goals. 6
If you want to try and conceive naturally, you may be feeling disappointed by this information. Just remember it’s your body and you do get to decide when and how to pursue pregnancy.
Because of the risk for disease progression while trying to get pregnant, some doctors recommend undergoing fertility tests before stopping birth control, so that you know what your chances are ahead of time. Remember, going off of hormonal therapy (birth control) can allow the disease to progress rapidly, so getting a picture of your fertility before allowing that to happen is a wise idea.
To assess your fertility, your doctor may recommend imaging to see if your fallopian tubes are blocked in any way, and they may also recommend checking to see what your ovarian reserve is, since endometriosis can decrease this. They may also suggest you have your partner’s sperm tested, just to ensure that he can contribute his part quickly and efficiently too. 1
Are There Natural Treatments for Endo?
If you’re more of a Natural Nancy and you’re not loving all the surgery and hormonal drug options, then you might prefer to consult a Naturopathic Doctor (ND) as opposed to an MD.
ND’s believe in the body’s natural ability to heal itself, and they generally employ non-invasive, supplement and/or food based treatment modalities. 2
Unfortunately, we don’t have a Naturopathic treatment plan to show you. This is because most NDs develop and promote their own treatment plans for things, rather than adhering to a standardized treatment protocol like MDs do. While this allows for a greater amount of individuality in treatment, it also prevents us from sharing generalizable treatment information.
If you want to pursue Naturopathic care for your Endometriosis, we recommend contacting a certified ND who specializes in women’s reproductive health. You can use this link to search for NDs in your area.
If all this makes you feel overwhelmed and unsure where to start, you’re not alone. The thought of needing prescription meds, surgeries, and fertility treatments, just to live a normal life is super scary. Also, these interventions don’t guarantee good results and many women find that they are still hugely impacted by the disease.
Because of this, we want to share some ideas and resources you can use to help yourself.
First, let’s talk about food and nutrition. It’s estimated that roughly half of women with Endo find at least some success in controlling symptoms by using diet, possibly because so many Endo sufferers also have gastrointestinal problems. 7
Just to clear things up though, there is no one right diet for Endo. Different diets work better or worse for different people based on a variety of factors including lifestyle, tastes, food sensitivities and allergies, and of course any additional diagnoses such as IBS, Crohns, etc. 7
We do know the basics of what a good Endo diet is though, and we can make suggestions for dietary modifications based on the reports of other women.
Generally speaking, an anti-inflammatory diet will be most helpful, since much of the pain from Endo is caused by inflammation. An anti-inflammatory diet is one that focuses on getting lots of fruits, vegetables, nuts, and seeds, while limiting sugary foods, processed foods, and red meats. Chemically, this is the basis for creating an environment in your body where inflammation is less likely to occur or get out of control.
Some women find that cutting out one or more of the following foods is helpful in managing their symptoms:
Popular healthy eating patterns among those seeking to decrease inflammation include the Mediterranean Diet, the DASH Diet, and a Whole-Foods Plant-Based Diet.
Additionally, there are certain nutrients that may help with your symptoms, including Magnesium for muscle relaxation, Zinc for hormone regulation, and Fiber for estrogen excretion. 8 You can choose to find foods high in these nutrients, and/or take supplements.
So, if you’re looking to gain more control over your Endo symptoms, optimizing your diet might be just the thing!
You know us, we are all about making sure you don't try and do this difficult journey on your own. So, here are some links to communities and resources for those with Endo.
This is just the tip of the iceberg. There are so many places you can find information and support for Endometriosis! Dear friends, please don’t do Endo alone, there’s no need to.
The Bottom Line
Endometriosis is an extremely common and potentially debilitating disease that is all-too-often misunderstood, under-treated, and even overlooked. While the pain and health risks that come with Endo should be reason enough to treat the disease, women with Endo have a long, sordid history of being dismissed by their healthcare providers as attention-seekers, over-dramatizers, and lazy individuals looking for excuses to get out of work, school, chores etc. 4
If you have Endometriosis, there is help for you, even if it’s imperfect, invasive, and expensive. The consequences of doing nothing can be far worse than the treatment and may result in things like infertility and/or organ removal. 1, 4
Choosing to engage in support groups and/or self-help options like diet, can be a great way to complement the care you get from your doctor(s). There are ways you can start to take more control over your body and your disease!
Did you learn something you didn’t know before about Endometriosis? Do you have any resources for Endo sufferers that you’d like to share? Find us on Facebook, Instagram, Pinterest, and TikTok!
In parting, remember that eating healthy, whole foods, and lots of plant foods is one of the simplest, safest, and most effective things we can do to promote good health in our bodies. As with every preventative/restorative measure though, sometimes these changes alone are not enough to help our bodies function the way we want or need them to. If you are struggling with health problems, please contact your doctor or other healthcare provider such as a Naturopathic Doctor, Dietitian, or Mental Health Professional to see if they can offer appropriate guidance and care. We at Wholesome Story believe that healthy communities require community effort, so we advise you to keep your healthcare community aware and involved in your journey as you pursue better health.
- Crawford N. What is endometriosis? A fertility doctor explains endo and painful periods. YouTube. https://www.youtube.com/watch?v=wqsq5s9TuVk. Published October 2, 2020. Accessed February 23, 2023.
- Gallagher M. How to treat endometriosis | endometriosis pain relief protocol | heal endometriosis naturally. YouTube. https://www.youtube.com/watch?v=O3Wubfb17uQ. Published February 12, 2019. Accessed February 23, 2023.
- Mayo Clinic Staff. Endometriosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656. Published July 24, 2018. Accessed February 23, 2023.
- Griffith L. Rethinking how we treat endometriosis | Linda Griffith | tedxmit. YouTube. https://www.youtube.com/watch?v=_A_TJ6JihXI. Published August 27, 2022. Accessed February 23, 2023.
- Cleveland Clinic Staff. 5 warning signs of endometriosis. YouTube. https://www.youtube.com/watch?v=REpk52xOZwc. Published June 23, 2022. Accessed February 23, 2023.
- Mayo Clinic Staff. Endometriosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661. Published July 24, 2018. Accessed February 23, 2023.
- Nap A, de Roos N. Endometriosis and the effects of dietary interventions: What are we looking for? Reproduction & fertility. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9259892/. Published May 30, 2022. Accessed February 23, 2023.
- Gilmerm CCS, Barth C. Endometriosis diet: Foods to eat and avoid. Cleveland Clinic. https://health.clevelandclinic.org/endometriosis-diet/. Published January 4, 2023. Accessed February 23, 2023.
- All gifs obtained from Gify.com; links for each gif are posted below the respective image.
- Image 1: Mayo Clinic Staff. Endometriosis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656. Published July 24, 2018. Accessed February 23, 2023.
- Image 2: Ranch C. Laparoscopic Surgery Specialist in McKinney, TX: Craig Ranch. Craig Ranch OB/GYN. https://www.craigranchobgyn.com/services/laparoscopic-surgery/. Published August 30, 2022. Accessed February 23, 2023.