What is endometriosis?
The womb (uterus) is lined with a unique type of tissue called endometrium. It is designed to thicken throughout the course of the menstrual cycle to prepare for a pregnancy, and to slough off every month if pregnancy doesn’t occur. This tissue then leaves the body via the cervix and through the vagina in the form of a period (menstruation). Sometimes, endometrial cells can grow in places where they aren’t meant to; when these tissues grow outside of the womb they can cause severe pain, and this condition is known as endometriosis.
Endometriosis can sometimes affect fertility and anyone planning a pregnancy with endometriosis can access support through their GP.
What causes endometriosis?
It isn’t clear why some people get endometriosis and others don’t, but there are a few contributing factors. Retrograde menstruation is one cause of endometriosis; this occurs when menstrual blood flows back through the fallopian tubes instead of out through the vagina. There are other reason for endometrial cells to grow outside the womb, with complex underlying causes. Cells may migrate with no clear cause, or hormonal action on developing cells in other parts of the body may cause them to grow into endometrial-type cells instead of the types of cell native to that area.
Hormones influence endometrial cells wherever they are in the body, and so those types of cells naturally slough off around the time of the menstrual period every month. Unable to leave the body, this free tissue can cause pain and sometimes more serious problems.
Usually, endometriosis affects tissues and organs close to the womb, including the bowel and bladder, but occasionally affects other organs such as the lungs.
The main symptom of endometriosis is pain, and this pain can take several forms:
- Severe period pain.
- Pain triggered by having sex or after sex.
- Pain in the lower abdomen or back.
- Pain when going to the toilet.
The symptoms of endometriosis commonly follow the pattern of the menstrual cycle, and may be at their worst during your period or at a specific point in your cycle. Other symptoms of endometriosis can include fatigue, depression, abdominal bloating and nausea. Endometriosis flare-ups can also affect bowel habits and people with endometriosis sometimes experience diarrhoea or constipation alongside other symptoms.
Endometriosis that affects the bowel can cause bleeding from the bowel, usually at the same time as your period. Endometriosis that affects the bladder can cause you to have blood in your pee. Rarely, endometriosis can affect the lung, which can make you cough up blood.
Symptoms that could mean endometriosis can also be caused by other conditions so should be properly assessed by a doctor. Some of the conditions that can look like endometriosis need urgent treatment so if you have any concerns, do see your GP as soon as possible.
Endometriosis is difficult to diagnose based on symptoms alone, as the symptoms can vary so much from one person to the next and can overlap with or mimic the symptoms of other conditions. This is why endometriosis is thought to be somewhat underdiagnosed; more people may be living with the condition than are known about.
A doctor may consider a diagnosis of endometriosis based on symptoms and examination, but confirmation usually requires some further tests. Some of the tests a doctor may request when someone has lower abdominal pain and unusual or very heavy vaginal bleeding can include:
A jelly scan like that used in pregnancy, an ultrasound can be performed on the outside of the lower tummy or may be performed using a special wand in the vagina for better imaging of the reproductive organs.
A surgical procedure where a small incision (cut) is made in the skin of the abdomen, through which a small tube is passed which allows doctors to examine the organs of the lower abdomen and look for endometrial tissue existing outside of the womb. This is the best way to get a definite diagnosis of endometriosis.
Blood tests are used for two main reasons in endometriosis. Firstly to look for other possible causes of symptoms, such as infection or inflammatory markers; secondly to monitor any consequences of symptoms, such as anaemia for those who have experienced frequent heavy bleeding.
There is currently no way to prevent or cure endometriosis, but early diagnosis and effective treatments can help slow progress, reduce symptoms, and prevent complications.
Treatment for endometriosis depends on the severity and extent of symptoms. Endometriosis may be medically managed, or surgical interventions can be required.
Medically managing endometriosis focuses on hormonal treatments, including:
- The contraceptive pill
- Contraceptive injections (‘depo’ injections), implants or patches
- The hormone-releasing coil (intrauterine system or ‘IUS’)
There are lots of different hormonal contraceptives as well as some non-contraceptive hormonal treatments for endometriosis.
Pain relief is an important part of endometriosis treatment. Some painkillers can have side effects so a doctor may recommend you begin with simple painkillers and work your way up to stronger medications, using the lowest dose that effectively manages the pain.
More severe cases, or when endometriosis symptoms don’t improve well with medication, may be considered for surgery. Endometriosis surgery is performed as either a laparoscopy or a laparotomy. Both of these are done under general anaesthetic.
Laparoscopy or ‘keyhole surgery’ is a type of procedure where small holes are made for a camera – actually a slim tube called a laparoscope – and surgical tools to be inserted. Endometrial tissue can be cut away and the healing time and scarring is minimal.
Laparotomy involves making a larger incision so that a surgeon has more access for more complicated removal of tissue. Laparotomies have a slightly longer healing time than laparoscopies and laparoscopies are the most common type of surgery for endometriosis.
Endometriosis can have an impact on other areas of life and health. Living with a chronic painful disease can be distressing and debilitating, and some people find that their mental and emotional wellbeing is affected by endometriosis.
Chronic pain conditions can affect a person’s ability to exercise, to sleep and rest, to work and to go about their normal enjoyable activities. This can have a further impact on mental and physical health. If endometriosis causes pain and bleeding during sex, this can have an impact on relationships, mental health and reproduction, so it’s always important to get the right support for any problems.
People with endometriosis have a slightly higher chance of getting ovarian cancer than the general population, but the overall risk of ovarian cancer is still very low. There is another, very rare form of cancer that is linked to endometriosis, called endometriosis-associated adenocarcinoma.
Having problems with fertility is a common complication of endometriosis, as endometriosis can cause damage to the ovaries and fallopian tubes. Specialist support is available for anyone having trouble getting pregnant, and there are lots of options to explore for people having trouble conceiving.
Endometriosis risk factors
Endometriosis is thought to affect around 10% of women and girls around the world, at any time in their lives from menarche (the onset of menstruation) to menopause. Some of the risk factors we do know include:
- Having more frequent than usual menstrual periods – that is, a cycle of less than 27 days from the start of one period to the start of the next.
- Starting your periods relatively early.
- Reaching the menopause relatively late.
- Never having given birth.
- Having a low body mass index (being very slim).
Having a close family member with endometriosis increases the risk slightly, but it isn’t necessarily possible to predict who will and won’t be most at risk of developing endometriosis.
Endometriosis can affect anyone born with a uterus so transgender men or some non-binary people should also be aware that they may be at risk.
Endometriosis symptoms should be assessed by a doctor so that you get the right investigations and treatment as soon as possible. Some of the symptoms that could be related to endometriosis can also be indicators of other conditions; some serious, some not so serious, so it’s important to be properly assessed by a medical professional.
If you already have a diagnosis of endometriosis but are struggling with managing the symptoms or any of the possible complications, it’s always okay to ask for help.
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