All About Endometriosis
Uwe Porters - Mid-wife / Pregnancy & Postpartum Expert
Because it’s Endometriosis Awareness Month, we wanted to share some facts about this fairly common, but often overlooked disease. Even though it affects nearly 10% of women worldwide, endometriosis is not very well researched and unfortunately, there is no cure. Many women suffer in silence and have to wait years before getting a diagnosis. Meanwhile, the symptoms are hellish and can control your whole life.
It’s time we paid more attention to endometriosis.
In this post, we’ll tell you about the disease, what’s known about it, the symptoms and some treatment options.
What is Endometriosis?
Endometriosis is a condition where tissue that resembles the lining of your uterus develops in other parts of the body. This tissue can grow anywhere: in your bowels, pelvis, abdominal cavity, diaphragm or sometimes, even in your sinuses!
The growth of this tissue causes all sorts of problems: inflammation, hard spots, growths and cysts that can cause severe pain. Due to the pain, many women with endometriosis will go to their doctor but the disease is often overlooked. It’s hard to diagnose because endometriosis symptoms depend on how much tissue there is and where it is located.
A Few Facts About Endometriosis:
- It is estimated that 1 in 9 women has endometriosis
- In general, it can take an incredibly long time to reach a diagnosis. The average is seven to 20+ years to be diagnosed. As a result, women sometimes suffer in silence for years and years
- The symptoms are diverse and intense. Things like hellish abdominal cramps, extreme pain during sex, pain during bowel movements or periods with excessive blood loss are a few of the common symptoms
- Endometriosis is often not detectable on ultrasounds or in blood test results
- Although it isn’t known what causes endometriosis, we know that it is due to a hormonal imbalance that manifests itself as an inflammatory disease
- Anyone can get endometriosis. Teenagers, young adults and even menopausal women can develop endometriosis
Women with endometriosis often live with debilitating and painful symptoms for years before they get a diagnosis. There are a lot of different reasons for this, but one of them is that the symptoms vary so much from woman to woman that it is hard to reach a definitive diagnosis. The cause of the symptoms is also hard to see on routine testing methods like ultrasounds. As a result, women are often sent to a range of specialists over the course of many months or years before getting a diagnosis.
While medical professionals are still learning about endometriosis, the best way to diagnose it is by recognizing the symptoms and telling your doctor combined with an ultrasound, MRI or keyhole surgery. This allows doctors or osteopaths to test the tissue.
An endometriosis diagnosis based on ultrasound images alone is not always possible. However, some doctors are able to detect endometriosis through a manual vaginal or anal examination.
What are the Symptoms of Endometriosis?
Symptoms of endometriosis vary dramatically. This is what makes the condition hard to diagnose. However, the following list includes some of the most common endometriosis symptoms:
- Very painful periods and/or ovulation
- Pain during sex (when entering and/or thrusting), depending on the positions.
- Pain when pushing out the stool
- Anal cramps or stabbing
- Tailbone and pelvic pain
- Intestinal complaints
- Pain when urinating
- Low back problems
- Diaphragm problems
- Infertility issues
- Nerve pain
- Heavy legs
- Difficult postnatal recovery
Symptoms are often confused with similar symptoms of other diseases like irritable bowel syndrome and fibromyalgia. The symptoms are often taboo or awkward to talk about with a medical professional or partner. As a result, women with endometriosis also report issues in their relationships, especially because having sex can be impossible due to pain and there is no clear cause.
How Does Endometriosis Develop?
Unfortunately, there is no clear cause of endometriosis but there are several theories.
It used to be thought that the cause was something called 'retrograde menstruation'. During menstruation, most of the menstrual blood flows out through the vagina, but with retrograde menstruation, some blood from the uterus can also flow into the abdominal cavity through the fallopian tubes.
This is one theory but there are also several other potential causes. Unfortunately, there is no medical consensus on this yet.
Research indicates that the cause of endometriosis is probably a mix of different things: a hormonal imbalance, genetics, immune disorders, stem cells, peritoneal cells, harmful substances, Müllerianosis (a rare type of tumor) and more.
It’s hard to pinpoint a cause for endometriosis and sometimes, it’s a lot of different things together that can cause the condition. While some research is being done, it is clear that there is a lot of work to be done to discover a definitive reason why some women develop endometriosis.
Is Endometriosis Hereditary?
While it is not 100% proven, it is very likely that endometriosis is hereditary. This is another reason why endometriosis is sometimes hard to diagnose. If women in your family have always suffered from intense, painful periods but spent their lives accepting the pain as normal, it can cause women to believe that this is just a part of their life that they have to endure. As a result, many women suffer unnecessarily for years and years.
Endometriosis and Your Fertility
Endometriosis is often immediately associated with fertility problems. However, not everyone with the condition has problems getting pregnant naturally.
The degree, severity, and location of endometriosis are factors that come into play. In addition, the hormonal imbalance of endometriosis also affects your fertility. The presence of cysts (PCOS) or endometriomas on the ovaries also influence the chance of pregnancy. They can affect the quality of the follicle (the immature egg cell).
The endometriosis growths and adhesions can also make the connection between the ovaries and fallopian tubes more difficult.
Can you Cure Endometriosis?
Unfortunately, there is no cure for endometriosis. The goal of treatment is to get the symptoms under control and to treat any fertility problems (if you want to have children).
There is no one size fits all solution for endometriosis. But that doesn't mean you have to live with it or that there isn't a suitable treatment option. The type of treatment you need depends on your symptoms.
There are three types of treatments that can provide relief from endometriosis.
There are several drugs that can be used to treat the pain associated with endometriosis. Examples include hormone therapy, pain relief or contraception.
Osteopathy is a drug-free, non-invasive healing therapy that aims to improve health across the whole body by manipulating and strengthening the musculoskeletal framework. An osteopathic physician will focus on the joints, muscles, and spine. An internationally recognized expert is the Flemish osteopath DO - MSc Colette Peeters. Peeters has almost 25 years of experience and expertise in the investigation and treatment of endometriosis patients.
Osteopathy is used to diagnose endometriosis, but also after surgery to restore mobility as much as possible. In the body, the internal structures must be loose and mobile. Doing vaginal or anal exams can help you feel where there is a loss of movement and find out where the pain is coming from.
Studies show that osteopathic techniques have a positive effect on the quality of life of patients with endometriosis. After treatments, many people report a significant reduction in pain and fewer fertility problems.
The most effective way to treat pain is surgery to remove tissue that has built up due to endometriosis. Even in severe cases of endometriosis, most can be treated with laparoscopic surgery. In laparoscopic surgery, your surgeon inserts a slender viewing instrument (laparoscope) through a small incision near your belly button and inserts instruments to remove endometrial tissue through another small incision. Surgery will not cure endometriosis, but it can reduce pain.
The Bottom Line
If you’re suffering with symptoms and trying to get help, we want to encourage you not to give up. We know it can be a long, lonely journey, but remember that you are not alone. If you’re struggling or you’ve already been diagnosed with endometriosis, talk to us. We are here to listen and help.