Endometriosis is a fairly common condition that affects around 1.5 million women in the UK. It most commonly manifests as heavy and painful periods but at its worst can lead to disabling pain, infertility and depression. Despite all this, it's also one of the least publicised and understood health problems with few people have heard of it and even worse many doctors failing to diagnose it. In this post we'll go through what endometriosis is, how it can manifests, what diagnostic and treatment options there are. We'll also aim to dispel many of the myths surrounding this common women's health problem.
What Is Endometriosis?
First of all, Endometriosis is shockingly common. It affects 1 in 10 women so chances are if you don't have it then you know someone who does. Endometriosis occurs when the tissue that lines the womb (endometrium) grows in other locations like the ovaries, fallopian tools and pelvic cavity. Very rarely, this tissue can be found in the vagina, rectum, liver, lungs and even the brain. This out of place tissue behaves like the endometrium and so can have devastating consequences.
The severity of endometriosis varies and is dependent on a number of factors. It is usually graded from stage 1 to 4 (ie mild to very severe). This is a clinical categorisation which depends on the amount and location of the endometrial tissue as well as whether any cysts, scarring or infertility is present.
What Causes Endometriosis?
Unfortunately, no one knows exactly what causes Endometriosis although a number of theories do exist. One is that the blood, cells and tissues shed during a period flows backwards (retrograde) into the fallopian tubes, ovaries and pelvic cavity to seed the endometrial tissue outside the womb. The main flaw with this theory is that some women have Endometriosis but not retrograde period flow whilst the reverse is also true. Other theories include that some primitive cells outside the womb turn into endometrial cells or that women with the condition have an abnormal immune system.
Symptoms Of Endometriosis
Not everyone who suffers from Endometriosis will experience symptoms. Equally important is that the severity of your symptoms may not be an indicator of the severity of the disease. That being said, by far the most common symptom of Endometriosis is pelvic pain which is usually related to your periods. This pain is usually more severe than regular menstrual cramping and can begin just before your period and continue throughout. The painful periods, also known as dysmenorrhoea, may get worse over time and may also affect the abdomen or lower back.
Other possible symptoms experienced by sufferers include pain during or after sexual intercourse, pain opening your bowels or passing urine and heavy or irregular periods. Affected women might also complain of bowel changes or infertility. As you can see none of these symptoms is particularly specific and could apply to any number of other conditions. This is probably one of the reasons that make Endometriosis hard to diagnose.
The diagnosis of Endometriosis begins with a thorough medical history which will include your menstrual background and sexual history. Your doctor will then likely examine your abdomen as well as do a gynecologic exam of the vagina and cervix. They might send off swabs and do a smear test (if you haven't had one recently). This will exclude things like cancer and infections.
The next step is usually to perform an ultrasound scan of the pelvis. This may be performed by placing the ultrasound probe on the abdomen and pelvis (ie on top of the belly) and/or also to use a vaginal probe (transvaginal) which allows better imaging of the uterus and ovaries. The ultrasound scan will show if there are any lumps or cysts. Whilst an ultrasound scan can't show endometriosis, it might show if there are any cysts that are associated with endometriosis (endometriomas). Other diagnostic tests that your doctor might perform include a CT scan or MRI scan to get better imaging of the pelvis.
Ultimately, the definitive test for endometriosis is Laparoscopy. This is performed through keyhole surgery where a camera is inserted into the pelvis to look for endometrial tissues which may also be biopsied or even shaved off for treatment. Unfortunately, this is an invasive procedure that requires surgery under general anaesthetic. As such, doctors usually prefer to try the above less invasive diagnostic methods and may attempt to medically treat the condition then opt for Laparoscopy if there is no improvement in symptoms.
Sadly there isn't a cure for Endometriosis. There are however many treatment options which can help control the disease and manage the symptoms. The treatment for Endometriosis may be medical or surgical or a combination of both. It is important that the diagnosis is made early on and that you receive management from a specialist. Regardless of the treatment (medical or surgical), the first step is to gain control of the pain if you're suffering from this. Pain relief for Endometriosis may range from painkillers, physical therapies and other forms of pain modulation. Your doctor may refer you to a pain clinic if you have severe pain. This will also enable you to access a range of different treatments.
Medical treatment of endometriosis is often in the form of hormone therapy to block or reduce oestrogen in the body. The thinking behind this is that since oestrogen stimulates endometrial tissue to grow. Thus, blocking it will shrink down the ectopic endometrial tissue hence controlling the endometriosis. The options for hormone therapy include taking the combined oral contraceptive pill, progesterone pill or implant or taking oestrogen blockers. Another option is also using the Mirena which contains a progesterone that is released locally into the pelvis and lasts for up to 5 years unless removed earlier.
In most circumstances, surgical treatment is reserved for when medical management fails. The procedure is called a laparoscopy and involves using keyhole surgery to burn away endometrial tissue, remove any endometrial cysts and divide in scarring or adhesions.
Fertility & Endometriosis
The evidence is still outstanding regarding the link between endometriosis and infertility although there is a suspected correlation between them. It's very important to know that having endometriosis does not mean that you will have problems with fertility. If you do have issues with infertility then you should see a specialist. They will investigate whether there is an identifiable cause and whether you might require help with regards to conceiving.
Living With Endometriosis
Given how common endometriosis is, the time it takes to diagnose the condition and the secrecy or ignorance around it means that often many women suffer in silence. The pain can be debilitating with many physical as well as psychological implications. It's important to know that you're not alone and seek help from a doctor early on. Make sure that you are referred for investigations by a specialist. This is because diagnosis can take a long time. It also means that you will likely be managed with a multi-disciplinary approach. Hence they can target problems like pain or suspected fertility issues should any occur.
Endometriosis is a tricky condition to diagnose as it's not often on the patient or doctor's mind. Studies have shown that it takes women with Endometriosis an average of 7.5 years from first seeing a doctor to getting a definitive diagnosis. Yet if you suffer from any of the symptoms above you should seek help from your doctor. Specifically, state that you're concerned about Endometriosis. Early diagnosis and management are potentially life-changing. It allows symptom control as well as an exploration of potential treatments or management options.
There are a number of organisations dedicated to supporting women suffering from endometriosis. Visit the NHS dedicated page and Endometriosis UK for more guidance or advice. Also, check out the rest of the blog for women's health and lifestyle issues.