Many women, during those special days of the month, experience cramps and pains that often require painkillers. The minute their period is over, so is the pain and discomfort. There is a significant number of women, however, that this pain persists all day everyday for many years. Those women live amongst us, talk with us, work with us, have coffee with us but we know nothing about it. They are the heroes who fight the “invisible disease”, endometriosis.

Probably you have heard about it, the name “does ring a bell” as many might say but only very few know exactly what women with endometriosis have to cope with. Endometriosis is mistakenly referred by some as killer cramps but this is far from the truth.

Endometriosis diagram Endometriosis is a painful and chronic disease in which tissue similar to the inside of the womb (uterus) grows in other areas of the body. Most often it is found in the ovaries, fallopian tubes, outer surface of the uterus, the tissue lining the pelvis, bowel, bladder, rectum.

In very rare cases, it has been found in the lungs, brain and skin. Endometriosis typically affects women during their reproductive years, ranging from the time they first get their period until menopause, but it can also affect non-yet menstruating girls and women after menopause, as well as a small number of men. It is estimated that a total of 176 million women worldwide have endometriosis.

The most common symptoms of endometriosis include:

  • very painful periods, getting worse over time
  • pain during intercourse or immediately after
  • excessive bleeding
  • spotting or bleeding between cycles
  • chronic pain in the lower back and pelvis
  • pain with bowel movement or while urinating
  • constipation, diarrhea, bloating or nausea
  • infertility
  • fatigue
Another case of severe dysmenorrhoea?

The medical description of endometriosis does not even begin to describe the reality of what it means to actually suffer from the condition. It is normal for many women to have painful periods, called dysmenorrhoea. The cramps and pain starts almost the same time as their period and ends with it.

Endometriosis pain

Women with endometriosis, though, do not “simply have dysmenorrhoea” and therefore, are quite often faced with disbelief. Due to the severity of the pain they experience it is only natural to keep going back to their doctor. Instead of receiving a diagnosis, however, they regularly end up being accused of “everything being in their head” , not being able to handle the fact that “this is part of being a woman” or that “they have a low pain threshold”.

The many different symptoms it creates, the disbelief of some doctors, even today, that teenagers and young women cannot get it, combined with a widespread lack of awareness is what causes this disease to be often un-diagnosed or misdiagnosed for up to 7 years! Just try to imagine what it would be like to have a severe toothache for 7 years. How would that affect you? Would you be able to continue your life as usual, go to work, play with your children, get romantic with your partner while all the time you have this excruciating pain? The answer is NO.

Yet, women with endometriosis have to daily withstand the constant pain and discomfort for many years and struggle to continue their life normally. As many of them will state, quite often all of this takes it toll on their physical, mental, social and personal well-being.

Relationships have been ruined, jobs have been lost, university courses have been rejected because of the impact the disease has on women.
It does NOT mean infertility

Pregnant womanEndometriosis also “hits” women in their mother-to-be-desire hotspot. Endometriosis affects a woman’s fertility but it does NOT necessarily mean that she will be infertile, as many wrongly believe. The truth is that there are no reliable statistics that indicate the percentage of women with endometriosis that experience fertility problems and the ones that do not. Therefore, it is very difficult to estimate whether a woman will have difficulties or not to create a family of her own.

In general, however, 60-70% of women with endometriosis are fertile. The likelihood of having fertility problems increases with age, as it does for all women, and the severity of the disease. Still, a large number of women that do experience fertility problems get pregnant after IVF and some even do naturally.

The only way to diagnose endometriosis is through surgery, typically Laparoscopy. MRI, CT scans, transvaginal ultrasound and a pelvic exam can be performed to aid in the diagnosis of the condition but they can only give a “possible suspicion of the condition”. Surgery is required for proper diagnosis which simultaneously works as treatment since affected lesions can be removed.

What is the available treatment?

There are available treatments to alleviate symptoms of endometriosis but unfortunately, there  is no cure. Those with mild symptoms can manage them quite successfully with a healthier lifestyle and painkillers to relieve cramps and pain. A large number of women, however, need extra medications to combat symptoms.

Woman going to surgery They often have to take hormone therapies to stop endometriosis from getting worse. The less “lucky” of all are the ones that none of the above works and surgery becomes their only option.

Surgery can be performed either to remove areas with endometriosis or, sometime, even the entire uterus and ovaries (hysterectomy). Some women may require surgery several times over their course of their life and a combination of lifestyle changes plus medication to relieve their symptoms.

There is this misconception that a hysterectomy will “cure” endometriosis and often needless hysterectomies are performed. It is essential to really talk with your doctor continuously and explore all options before undergoing a drastic, irreversible surgery.

Hope exists

What exactly causes endometriosis has not been fully characterised. Many theories exist and suggestions, linked to enviromental, physical and hereditary factors. There is ongoing research that takes place to determine the exact causes of the condition but so far limited information has emerged. A recent study from a team at Northwestern University, Chicago, USA revealed the presence of two, till now unstudied, genes that seem to play a key role in the initial development of the condition.

Researchers are very optimistic that the discovery of these two genes will eventually result in the development of non-invasive diagnostic tests and a possible cure. Until that happens though, know that finding out you have endometriosis is the first step of getting your life back!

bigstock-Teenage-Girl-Visits-DoctorDo not be afraid to claim your life back

If you experience any of the symptoms that can imply endometriosis, do not be afraid to insist until you get a definite diagnosis of what causes them. Endometriosis can have a devastating effect on a woman’s quality of life.

She may feel anger, despair, confusion, loneliness. If you have endometriosis, speak about how you feel, inform your doctor about your symptoms and insist on their severity until you are heard.

Try to live a healthy life, as it can alleviate significantly the intensity of the symptoms. It is important to get support in order to cope with the condition, so don’t hesitate to join a relevant group in order to talk with other women that go through the same as you. For the rest of the world, the next time you hear a woman has endometriosis, please believe her when she says she is in pain and offer as much love and support as possible because she is a true hero!

Important information groups:

World Endometriosis Society

Endometriosis Association

Endometriosis global forum for news and information

Lab scientist, sharp dresser and cooking guru Maria is one half of the original founding team. She brings her opinions with earnestness and a smile, even when there are razor blades inside.


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