What is endometriosis?

For those who don’t know what endometriosis is, don’t worry- you are not alone. I didn’t know about endometriosis until I was 24 years old, and I had been dealing with it for several years before that! Seeing as it affects roughly 1 out of 10 women, it’s time that more of us knew about it sooner!

What is Endometriosis?

Endometriosis is a condition where tissue that is similar to the endometrium (the mucus membrane that lines the uterus and thickens during the menstrual cycle) grows outside of the uterus- most often in places such as your ovaries, fallopian tubes, pelvis- but it can be found anywhere in the body such as the intestines, rectum, bladder, vagina, vulva, the cervix, lungs, etc.

I have found John Hopkins Medicine’s description most helpful as to what happens with endometriosis:

“During a woman's regular menstrual cycle, this tissue builds up and is shed if she does not become pregnant. Women with endometriosis develop tissue that looks and acts like endometrial tissue outside of the uterus, usually on other reproductive organs inside the pelvis or in the abdominal cavity. Each month, this misplaced tissue responds to the hormonal changes of the menstrual cycle by building up and breaking down just as the endometrium does, resulting in small bleeding inside of the pelvis. This leads to inflammation, swelling and scarring of the normal tissue surrounding the endometriosis implants.

When the ovary is involved, blood can become embedded in the normal ovarian tissue, forming a "blood blister" surrounded by a fibrous cyst, called an endometrioma.”

The inflammation caused by endometriosis can cause significant pain in some women, affecting many different areas of their body.

Why does Endometriosis develop?

Unfortunately, there is not a clear cause for Endometriosis at this time. A lot of people say that endo tends to run in the family, so if you have a close relative who has suffered from endo, it is possible that you could have it as well. It is not always the case, but it seems like the chances increase.

One way endo can spread though, is through ablation surgery. Ablation surgery is more widely offered than excision because there are more surgeons trained in the technique and it is a cheaper option due to the fact that it typically takes less time and skill.

How my surgeon explained ablation to me was this: Essentially the endometriosis growth or adhesions will be burned off, most times leaving the root of the growth behind. When burning the growth, it can potentially spray it to other places in the body, causing new implantations and adhesions to start growing. While excision surgery can be more expensive and require more skill, it is the more effective way to go in the long run.

What are the symptoms of Endometriosis?

Symptoms with endometriosis can range and are different for each person. There are some women with endometriosis who experience no symptoms at all, and others who are completely bed-ridden. Some common symptoms include:

Abnormally heavy periods, long periods, irregular periods, chronic headaches/migraines, bleeding between periods, pelvic pain, cramping outside of your period, intense painful periods, nausea, excessive cramps paired with lower back pain, bowel and bladder pain during or in between periods, pain with sex, and infertility.

Oftentimes, infertility can be one of the most telling symptoms for women with endometriosis who don’t experience any other symptoms. If you struggle with infertility, it’s worth talking to your doctor about the possibility of endometriosis.

The Four Stages of Endometriosis

It’s important to note that although there are different stages of endometriosis, they do not always line up with or indicate the severity of symptoms that someone might experience. There are women who experience no symptoms, yet have stage 4 endo and others who experience severe symptoms and have stage 1 or 2.

According to John Hopkins Medicine,

“The stage of endometriosis is based on the location, amount, depth and size of the endometrial tissue. Specific criteria include:

-The extent of the spread of the tissue

-The involvement of pelvic structures in the disease

-The extent of pelvic adhesions

-The blockage of the fallopian tubes”

The four stages of Endometriosis are:

• Stage 1, Minimal

• Stage 2, Mild

• Stage 3, Moderate

• Stage 4, Severe

The stage of endometriosis can only be truly assessed during laparoscopic surgery, where surgeons can actually look at and see all of the endo growth inside the body.

What are the effects of Endometriosis?

Like I said earlier, one of the effects of endometriosis is infertility. For some women, laparoscopic surgery to remove endo growth and adhesions can address infertility, but it is not always the case.

It also just generally decreases quality of life. Endometriosis has social, physical, mental, and emotional implications. It can cause anxiety, depression, and insecurity from feelings of isolation, discouragement, hopelessness, and exhaustion. It can effect your ability to live life on a daily basis- whether it’s having the energy to complete everyday chores around the house, go grocery shopping, engage with your family and friends, or even just getting out of bed in the first place.

Whether someone’s endo pain is unpredictable or every day, it can make it difficult to feel “reliable” when it comes to going to work or making plans with friends. Oftentimes women who experience severe symptoms feel misunderstood, dismissed, and feel like a burden to those around them with the shame and guilt that is attached to having to call out or cancel on a regular basis.

It can also affect relationships, especially those who are closest to you. For those who are lucky enough to have someone by their side helping them, it can put a strain on the relationship and can be a lot for the other person to carry at times. And I’m sure that’s only amplified when kiddos are involved! Chronic pain is difficult both to experience and to care for.

What is the cure or treatment for Endometriosis?

Technically, there is no “cure” for endometriosis, but one of the best things you can do is manage your symptoms. (More on that below!)

Laparoscopic Excision Surgery is also an option for treatment. It is expensive, and recovery looks different for everyone, but with the right surgeon it can be life-changing. Laparoscopic Excision Surgery is a minimally invasive procedure done in a hospital, and it is usually an out-patient surgery so you are in and out in one day. The surgeon will make a few incisions in your abdomen, fill up your belly with gas, and go in with a laparoscope and other tools to look for and remove endometriosis growth. (Essentially they locate any adhesions and dig out the root so that it is completely removed.) Once they are finished, they remove the tools and gas, close up your incisions, and send you home to rest and recover!

What can I do to manage Endometriosis?

Everybody is different, so it can be a bit of a learning curve to find out what works best for you, but what tends to be most successful in managing endometriosis symptoms is a holistic approach:

• Acupuncture

• Counseling/therapy

• Self-compassion

• Deep breathing

• Gentle yoga, exercise

• Walking regularly

• Warm baths with epsom salts

• Anti-inflammatory diet

• Traditional Chinese medicine

• Heating pads

• Massage

• REST! When your body hurts- listen. Take the time to sit down or lie down and rest. Slow down in life and accept the limits your body is giving you at the moment.

A common “treatment” for endometriosis suggested by doctors is birth control. From most of the research I’ve done and coming from the mouths of the two doctors I actually trust and have helped me with my endometriosis, birth control is not actually an effective tool in helping treat endometriosis. In fact, it usually only masks symptoms which can hide the problem and keep you from knowing what’s actually going on with your body. It acts like a band-aid, rather than addressing the root of the issue. In my personal opinion, I would stay away from doctors who suggest treating endo with birth control and search for a doctor who will help you address the root of the issue.

How do I know if I have Endometriosis?

The only way to truly know if you have endometriosis is through laparoscopic excision surgery.

Doctors may be able to theorize that you have endometriosis through a transvaginal ultrasound where they can look at the organs inside or a blood test to check endometriosis blood count and CA-125 levels. While these things do not confirm that you have endometriosis, they can be helpful tools for doctors to use in assessing the probability.

The biggest things to look out for are:

• if endometriosis runs in your family

• if you experience any of the symptoms listed above

• if you experience unexplained infertility and no other symptoms/pain

If any of these relate to you, it’s worth finding a doctor who knows about endometriosis and have a conversation with them. Not all gynecologists or doctors know what endometriosis is or the best way to treat it. Look for doctors who know what endometriosis is, and who will help you address the root of the issue.

Please feel free to comment with your own learning and experiences when it comes to endo- the more we can all learn together, the closer we get to changing the way women’s health is approached!