15 Serious Facts To Know About Endometriosis

Ten percent of women have endometriosis and up to sixty percent of women with painful periods have endometriosis. Yet, this disease is somehow shrouded in mystery.

Only few women in America know the symptoms or exactly what this disease is. Many women with endometriosis don't have symptoms and may go years without treatment. Even some women who do have symptoms assume that any period pain is normal and never mention changes to their doctor.

This isn't because endometriosis is a minor problem, in fact, it can cause sterility and intense pain. Pain that, if possible, is more painful then the worse period pain a woman can experience. So let's shed some light on endometriosis. We're going to cover more than the basics here, so prepare for the theories on why endometriosis develops and the best things to do to limit your symptoms.

Continue scrolling to keep reading

Click the button below to start this article in quick view

Start Now

15 First, the Basics

Endometriosis is when the uterus's lining grows on other organs in the body. Your doctor might describe these growths as "nodes", "bumps", "nodules" or "implants". Why implants? The uterine lining always remains connected to the circulatory system - your veins and arteries - and more or less embeds itself into any tissue it grows on.

For most women the node isn't painful while the implant is growing, but can be vary painful while the tissue sheds, which it does every month. However, thirty percent of women report that they have regular pelvic pain from endometriosis, regardless of the time of the month. Now take a second and think of suffering from endometriosis while on a period. Take a second and think of regular period pain; cramps, back pain, sore breasts, headache, bloating, nausea even. Now add endometriosis

14 Thinking Outside The Womb 

You might think that outside of your womb the tissue wouldn't "know" when to break free and bleed, but because it's still connected to the circulatory system it still comes into contact with the hormones that regulate your cycle. So no matter where the node grows, it still sheds, even though there's nowhere for the blood to go.

This can cause some problems because then the body thinks that this bleeding is a wound and therefore responds by trying to repair itself with scar tissue. Scar tissue forming in the uterus and surrounding areas is what causes the long-term effects of endometriosis. This scar tissue can even dislocate organs, if it binds them together. This can cause a lot of pain and discomfort and create issues when trying to get pregnant and/or when pregnant.

13 Where Does this Happen?

Endometrial nodes usually develop near the womb, like they've simply missed their target. The outside of the uterus, the bladder, the bowels, the ovaries, and the fallopian tubes are the most common places for the node to grow. Over time, most sufferers will develop more than one node and once established, these nodes continue cycling through their period every month.

It's rare, but there have been reported causes of nodes growing elsewhere. Occasionally nodes grow near the lungs (usually on the diaphragm, the muscle that controls breathing, but at least once on the actual lung), causing acute chest pain and requiring immediate surgery. Luckily, the woman in this case recovered quickly from the surgery, as most will. However, it's important if diagnosed with endometriosis, to be extra vigilant and take note whenever something doesn't feel right.

12 Retrograde Menstruation

One theory on the cause of endometriosis, proposed over two hundred years ago by Schron and Ruysh, is called "retrograde menstruation". Essentially, the theory considers that blood might build up in the uterus, or simply flow backwards. Occasionally, this blood makes it's way into the body cavity, that's the space in between organs. This endometrial tissue then attaches itself to other nearby organs and continues to function as normal, just in the wrong spot.

This might explain why endometriosis sometimes develops after C-sections, especially on the scar, when the womb is open and the likelihood of these cells spreading is higher. Of course, this is just a theory and many studies are currently being conducted to discover exactly what's going on.

11 The Nature vs. Nurture causes  

There are some other significant theories around the cause for this condition. Environmental toxins have been considered, although the specific mechanism by which the toxin would cause endometriosis has not been found. Another theory delves into the history of a woman's body, noting that when her reproductive system is first growing (when she is in her mother's womb) stem cells might scatter out throughout the system. These specific stem cells are limited to the reproductive tract, so they can only become a kind of cell you'd find there. But that means they do have the potential to become the cells that line the uterus.

It's hard to know the root of endometriosis, and whether it is caused by the nature of things, or the nurture of things. It's important to be aware of all potential factors that may cause a woman to become susceptible to endometriosis.

10 How Likely Am I To Get Endometriosis?

Any woman is technically at risk for endometriosis, but only about ten percent will actually develop it. This condition is more common in women who are in their forties or fifties, but it has developed in an eight-year-old. If your menstrual cycle is unusually short or long you're more likely to develop endometriosis. This could be a good reason to monitor each menstrual cycle to see if the pattern month-to-month is a healthy one. If you notice inconsistencies in your period, it may be time to contact a gynecologist.

Similarly, having a condition that blocks the normal flow of blood from your uterus is a risk factor. No one is certain what kind of genetics effect endometriosis, or if there is a specific genetic cause or not. However, you are more likely to get the condition if a relative has it. Oddly, women who have never had babies are also more likely to develop endometriosis.

9 How Can I Reduce My Risk?

Not many of the risk factors for endometriosis are under your control, but some are. Making sure you are living a healthy lifestyle is the best way you can help lower your risk of getting endometriosis. For starters, exercising regularly, that is more than four hours a week, will likely lower your risk. Find a workout best suited for you, a good idea is to keep exercise fun. So maybe a fun dance class or a group cardio class can help motivate you to get to the gym. Also, keeping a low body fat percentage. This may mean that you need to adjust your diet a little bit. You should talk to your doctor if you want more specific instructions, because they know your health best.

Creating a plan that combines both exercise and healthy eating can optimize your health and reduce you of many other health problems, including endometriosis.

8 Infertility Monster 

If you heard anything about endometriosis before you began reading this article it was probably that the condition can cause sterility. In fact, you may have heard that up to sixty percent of women who are infertile suffer from endometriosis. That's true, but the statistic is misleading. Mainly because it doesn't tell you whether endometriosis has caused infertility, or whether these women are infertile for other reasons and also happen to suffer from endometriosis.

It is a common aliment, after all. However, if you continue digging for more clarifying statistics on the rate of infertility among those with endometriosis you're likely to be disappointed. There's no reliable number for how many women with endometriosis are infertile. Many women with endometriosis struggle to get pregnant, but ultimately do. Others never succeed, and some have no unusual problems at all. Its tentatively thought that around sixty per cent of women who have endometriosis are still capable of getting pregnant through natural methods, but how easy conception will be is very hard to determine.

7 Maybe I'm Just Dying

The foremost symptom of endometriosis is abdominal pain. However, not all women will experience it, and how intense the pain is has nothing to do with how severe your endometriosis is. Neither does the location of the pain have anything to do with the location of the node. Why not? It has been suggested that nerves enter the nodes at different rates, based on a combination of their location and hormonal content. At least one study confirmed that nodes embedded deeply on the rectum seem to be the most nerve dense, and would therefore be the most painful. But, much of this needs further study.

A second cause of pain is inflammation. The nodes usually cause generalized swelling in their area, meaning a lot of nearby tissues and organs will be affected. Your level of pain for each inflammation site will depend on your body's specific nervous system.

6 "Insane Inflamed In The Membrane"

This inflammation can cause other problems itself, as it effects different organs. For example, painful and/or urgent urinating can occur as the inflammation leaves less room for your bladder (or if a node is specifically on your bladder, of course). The same goes for your bowels. So all around, going to the bathroom may not be a fun and easy trip.

The inflammation can also be disturbed during intercourse, which can result in being very painful. Then there's the symptoms associated with the scar tissue that develops as the body attempts to heal the nodes. Scar tissue can bind organs together and pull them out of their spot, enough to be painful. This combination of pains can be intense and some women will find it difficult to walk, but others won't feel anything at all.

5 Don't Forget To Kegel! 

The most commonly recommended treatment for endometriosis is certain types of hormonal birth control, including IUDs that deliver small amounts of progesterone to a woman's body. Medications that would relieve normal period pain, like NSAIDS (Asprin, Tylenol, and Advil) are often suggested as well. Women also report that using heat as they would for their period is pain relieving. There's nothing more magical then a Magic Bag when on a period. The heat is soothing and will help relieve the pain, if not, at least help distract you from the cramping. Also, a massage is never a bad idea. Ask your partner to help out here or book a massage appointment during your next cycle. Lastly, Exercises that deal with abdominal muscles and improve the strength of the pelvic floor can also help with pain. So Yoga and kegels both seem like good candidates.

4 Surgery

For cases of endometriosis that aren't controlled by the simpler methods described above, surgery may be performed. This usually involves a laparoscope that only requires small incisions. The surgeon will find and remove the nodes and he or she may also remove scar tissue to place organs back where they belong, if necessary. Extremely rarely, doctors may also cut the nerves that connect to the uterus. However, this nerve-cutting method comes with a high risk of complications and so is only performed in extreme cases.

Surgery in general is usually only recommended for women who have the later stages of endometriosis, because those with early stages seem to reacquire the nodes more quickly, and generally the surgery seems to be less effective for their pain. Again, no one is quite sure why this is. Like so much surrounding endometriosis, it needs more study.

3 Hysterectomy

If you've suffered with an extreme case of this disease, or you've dealt with the other treatment options to no avail, you may find yourself considering a hysterectomy. If your endometriosis is partly on your cervix, you may be considering a “complete” hysterectomy, which includes removal of the cervix. However, there are other structures that may need to be removed to best relieve your symptoms, including the fallopian tubes, ovaries, lymph nodes, and more. If all of these organs are to be removed the procedure is called a “radical hysterectomy” and is normally performed only when cancer is present in a woman's reproductive system.

It's also important to know that the endometrial growths must be removed alongside the hysterectomy, otherwise they will continue to cause you pain, even though your womb is not present. This is obviously a very serious decision and it comes along with a lot of side-effects that may not be worth the reduction in your endometriosis symptoms, to you. You'll want to make sure you've discussed this option thoroughly with your doctor and with women who have been through the same experience, in order to ensure that you're making the right decision for you.

2 Why Do Women Know So Little About Endometriosis?

One reason endometriosis doesn't get much press is because it is under-diagnosed. The symptoms from endometriosis are similar to a wide range of other conditions, which means doctors may have a hard time pinning down exactly what's going on down there. However, another reason endometriosis is so often under-diagnosed may be because doctors are often under-educated about it. Study published in 2016 found that among general practitioners in the Netherlands, seventy six out of eighty seven reported that they needed further education on the subject. Instead, these doctors would refer patients to OBGYNs after eliminating other causes of a woman's symptoms.

Waiting for an OBGYN is one cause of the long wait times for endometriosis diagnosis, which takes on average sixty-six months from the onset of symptoms! To be fair to doctors, forty of these months are usually patient delays, the time it takes a patient to go to a doctor’s office to discuss the symptoms. However, its also worrying that the doctors who were surveyed for this study only got 60% on a short endometriosis knowledge quiz. So, if you suspect that you may have endometriosis you should ask your doctor about it directly, giving them a chance to update their knowledge and consider all possible sources of your pain.

1 Final Advice 

Don't wait forty months (more than three years!) to tell your doctor about any unusual pelvic pain, period changes, or pain during sex. Make an appointment today! It's not a comfortable topic to discuss with anyone, we understand, but you may be at risk of severe pain, organ dislocation, and even infertility.

Talk to the other women in your life about this issue too, as one study found that women who have heard about this condition from other women are more likely to go to their doctor about their symptoms. Chances are one of your ten closest friends has this problem, and she may not even know it! Besides, raising public awareness about this issue and increasing the rates of its correct diagnosis is a great way to make it a research priority for doctors, scientists, and government bodies. 

Sources: Women's Health.gov, Ncbi.nlm.nih.gov

More in Did You Know...