Endometriosis is a serious disease but have you heard of it? No? Sadly, that’s not surprising: Many people really don’t know much about it. And that’s a big problem because it means that women who have endometriosis are often told that they do not have a medical problem, or face much too long a wait before being correctly diagnosed.
What is Endometriosis?
Endometriosis is a serious disease that only affects women. It’s an inflammatory condition and we think it may be linked to the way the immune system functions in our bodies.
What happens when you have endo?
When you have endo, cells just like those from the lining of the womb, grow in another part of the body, where they’re not supposed to be. When those cells survive in the wrong places, they behave just as they would do if they were in the womb. They match your menstrual cycle, and grow and bleed each month. This causes irritation, damage and often pain.
In the body’s attempt to heal the area damaged by the endo, scar tissue is formed, causing more problems and pain. Endo can also cause abdominal bloating, diarrhoea, constipation and bladder symptoms. But, sometimes women with endo have no symptoms at all.
If you could look at endo inside the body, it might appear as spots (white, red or brown), nodules, other types of growth, scar tissue or cysts in the ovaries. It can also be there, but not visible. You sometimes cannot see it because it is deeper inside the body tissues and not on the surface.
Endo is often a painful and distressing condition. It is also a common cause of fertility problems.
Related: Celebrity Endo Warriors We Love
Here Are 10 Facts You Really Should Know About Endometriosis
#1 Someone You Know Has Endometriosis
Endo is very common. At least 10% of women have endo. That’s one in every ten women. What does that mean? It means that someone you know and care about is suffering with endo right now! You can help. If you know more about endo then you can offer support and understanding.
#2 Endometriosis Is A Serious Disease That’s Not Talked About Enough
I bet that if men got endo it would be a top topic of research and conversation worldwide! But it’s not. The truth is that endo is just not talked about. Why is it that a medical condition that causes pain and infertility, and affects at least 10% of women, is so absent from our conversations? The answer is that it’s a woman’s condition that involves sex, periods and infertility — all of which means it’s taboo! We need to remove the stigma that surrounds these issues. We all need to change. Bad period pain is not “part of being a woman.” It is a medical condition that needs sympathy and understanding, as well as investigation and treatment!
#3 Typical Endometriosis Symptoms Are Pain and Infertility
Endo can cause painful periods and often painful sex. Half of the women suffering from endo also have problems getting pregnant. But it’s important to understand that endo is very different for every woman. Sometimes you can have endo without getting any pain or other problems.
The commonest symptom of endo is pain. The nature of the pain depends largely on where the endo is growing and may depend on the extent of the disease.
You may have pain with your periods, but you may also have pain that is not related to your periods, and you may have persistent niggling pain and pelvic discomfort. There may be pain during lovemaking. This pain is usually felt deep in the vagina and the lower abdomen or sometimes the lower back. It may persist for a few hours, or even, in rare cases, for a few days after.
Endo can cause pain at any location in the body where it is found. Therefore there may be pain in your back passage (rectum), in your vagina, or in your perineum (the tissue between the vagina in front and the back passage behind). There may also be back pain, painful bowel movements and pain when passing urine.
Period pain usually starts a few days before your period begins. It continues during the period and for a few days after the period. It then disappears or gets better until the next period is due. Heavy and irregular periods are another symptom of endo.
#4 Endometriosis Is A Serious Disease And Can Be Mistaken For Other Medical Conditions
Endo can cause medical problems wherever it grows. And endo can be found anywhere in the body. Endo usually grows in and around the pelvic organs, the womb, ovaries and tubes. This is why pelvic pain and period pain is so common.
Endo is also commonly found on the membrane that lines the inside of the abdominal and pelvic cavity (peritoneum). The peritoneum also partially wraps itself around the bladder and the lower end of the bowels (rectum), which are both near to the womb. This is why endo can also cause abdominal bloating, diarrhoea, constipation and bladder symptoms.
These endo symptoms are often mistakenly labelled as “irritable bowel syndrome,” simple constipation, chronic pelvic pain of “unknown cause,” unexplained bladder inflammation (interstitial cystitis), and even as symptoms of anxiety and depression.
After many years and the correct tests, the true cause is usually revealed. But during this time, women suffer tremendously, both physically and emotionally because their symptoms are not taken seriously. It takes courage (and a lot of pain) to keep coming back to doctors again and again to try and get to the bottom of your distressing symptoms.
Often endo is found in the ovaries, where it may form cysts known as chocolate cysts (medical term: endometrioma). These cysts are called chocolate cysts because the fluid inside them looks like melted chocolate. This fluid results from the bleeding that occurs in the cysts. These cysts can sometimes be mistaken for ovarian cancer.
At other times, the fallopian tubes become stuck down over these inflamed ovarian cysts. This is called a mass or abscess of the tubes and ovaries (the medical term is tubo-ovarian mass or abscess). This is often mistakenly blamed on an acute or chronic infection (medical term: PID or pelvic inflammatory disease). When repeated courses of antibiotics fail to solve the problem, surgery is usually done — and this is when, finally, the true underlying endometriosis condition is usually finally diagnosed.
In rare cases endo starts to grow in a surgical scar, for example in a C-section scar or hysterectomy scar on the abdomen. And in very rare cases endo has even be found inside the lungs
#5 Endometriosis Diagnosis often Takes Too Long
It takes an average of seven years to be diagnosed with endometriosis. Seven years! The delay in getting a diagnosis is often because endo symptoms can mimic another medical condition. Sadly, delays also often occur when a doctor does not take a woman’s symptoms of severe period pain seriously. Ladies, we are not meant to suffer! If your doctor is not taking your pain seriously, seek a second opinion!
Endometriosis is a serious disease, so how do we diagnose it? The first step is to assess your symptoms and to do a pelvic ultrasound scan. A pelvic ultrasound scan may show warning signs that suggest the diagnosis of endo, such as endometriosis-type cysts in the ovary, endometriosis in the muscle of the womb (medical term: Adenomyosis) which can be mistaken for fibroids, and where we see the ovaries and womb being held in unusual locations (for example the ovaries may be located behind the womb and fixed in place instead of being free to move).
Ultimately, the only way to know if endometriosis is present with absolute certainty is to look inside the body with surgery — either keyhole surgery (laparoscopy) or a traditional open surgical procedure. However, surgery is certainly not essential. Many women are treated for assumed endometriosis without having to undergo any surgery.
#6 Any Woman Who Has Periods Can Get Endometriosis
That’s right! Anyone having periods can get endo. Age is irrelevant, all women are at risk of having endo. And, yes, teenagers can have endo too. Gone are the days when we thought it was limited to older women only.
The majority of women diagnosed with endo are between the ages of 20 and 50, but it is increasingly being seen in teenagers. This doesn’t necessarily mean it’s becoming more common, it may simply mean that there is increased demand for the investigation of pelvic pain and that there are now better and more sophisticated ways of making the diagnosis available. It is also because doctors are becoming more aware of endo as a likely diagnosis in younger women and are (thankfully!) taking women’s period-pain symptoms more seriously.
#7 We’re Learning More and More About Endometriosis Causes
The exact cause of endo remains unknown but they are several theories. We do know that if your mum or sister has endo then you are more likely to have it.
The oldest and most popular theory of how endo forms is the implantation theory. Doctors know that period blood can flow backwards through the fallopian tubes into the pelvis during your period. The endometrial cells in this period blood might implant into the tissues where they fall, and then continue to survive and grow. It is now believed that one reason these endometrial cells may continue to thrive and grow where they fall may be due to an immune system that has some alterations and functions differently.
#8 There Are Great Endometriosis Treatments!
Endo is an awful disease. It can also be crippling. The good news is that there are a range of excellent medical and surgical treatments for endo. But be aware, treatment can sometimes be difficult and tedious. It helps if you understand the nature of your disease, as well as the current management and treatment options available for you.
There is no permanent cure for endo and treatment must be carefully planned and tailored to you and what your problems are. Your doctor will consider several factors, including: your age, how bad your symptoms are, where your endo is located and how bad it seems to be, and whether you want to have children.
Typical treatments for endo are hormonal treatments, medications such as Visanne, Aromatase inhibitors, the birth control pill and injections. Keyhole surgery (known as Laparoscopy) is also a good option, especially if medications are not working well enough to improve your symptoms. Sometimes treatment may not be necessary and a wait-and-see approach can be advised.
It’s really important that you find a doctor who is skilled and knows a lot about endo. The aim of treatment, depends on your age and wishes and includes treatment to:
- relieve pain
- control abnormal bleeding
- promote the possibility of pregnancy if you wish this now or in the future
- assess your current fertility to consider egg freezing if you are between 20-30 years old and wish fertility in the future
- to allow comfortable lovemaking
Your lifestyle (including sexual activity) may require some modification. This does not necessarily have to be a drastic change; we all modify our lifestyles now and again in response to situations.
You may be advised to cut down on alcohol, smoking and caffeine to help relieve your symptoms. Many women say that they experience considerable relief of symptoms as a result of dietary changes, supplements and herbs. With guidance from qualified complementary health practitioners you may find these treatments useful.
You need to discuss your problems and how you feel with your doctor. Seek a second opinion if necessary. And try joining a self-help group where you will find a wealth of information and shared experiences. If you’re in a relationship, make sure your partner is involved. Relationships may become strained because of persistent symptoms and the avoidance of lovemaking as a result of pain. You may need to alter and adjust sexual activity until your symptoms are controlled. Don’t be discouraged! It is absolutely possible to have a good sex life while living with endo.
#9 Endometriosis Surgery is a Good Option!
Surgery is sometimes used in endometriosis. This can be as a test to help confirm the diagnosis, and also as an excellent treatment. Not everyone requires surgery and it is no longer essential to have surgery to make the diagnosis of endo.
Most surgery done for endo is Laparoscopy or keyhole surgery. Laparoscopy is a procedure using a special telescope to look inside the pelvis. It is performed under a general anaesthetic and can be done as a day case procedure unless there are other medical problems.
During a laparoscopy the gynaecologist looks at all the pelvic organs to see what might be causing your symptoms. They may find endo, but sometimes all they can see is the scar tissue or adhesions that form when the body heals the inflammation and damage caused by endo. Sometimes they see nothing at all, but that doesn’t mean endo isn’t there. Endo can hide deep inside tissues and not be seen on the surface.
Endo can have different appearances during laparoscopy. Sometimes it may appear as white, red, black or blue spots. It may also appear as cysts in the ovaries or as areas of inflamed tissue with increased blood supply and blood vessels. Many experienced gynaecologists can recognise endometriosis by sight during surgery but the most reliable evidence is found by taking a sample from the tissue (this is called a biopsy), which is then examined in a laboratory under the microscope.
When laparoscopy surgery is used to treat endo, the gynaecologist will remove the spots of endo and remove the scar tissue and adhesions.
There are small risks with laparoscopy, but they are rare and this is a common and safe procedure done frequently all over the world. Risks include damage to the bowel, blood vessels and bladder, as well as the risk of requiring a larger cut.
#10 Endometriosis Can Cause Complications
Not only is endometriosis a serious disease, it is progressive too. If left untreated it will often get worse over the years, causing more problems for you. For some women, this is a slow process and they do well. For others, the endo gets worse quickly and severe problems develop at a young age.
Complications of endo include:
- Significant worsening of the pain, which can become constant rather than only during your period time.
- Growth of large ovarian cysts that will require surgery
- Bladder or bowel problems, that significantly affect the quality of life
- Pelvic infections
- Infertility due to damage of the fallopian tubes and pelvic scar tissue
- Infertility due to loss of eggs
- Possible higher risk of ovarian cancer
If you suspect you have endo you should seek the advice of a gynaecologist who specialises in endo. By having good knowledge about endo and choosing your treatment options in partnership with an experienced doctor that you like, you have an excellent chance of living a normal life with endometriosis.