Endometriosis Awareness Month
March 2022 is Endometriosis Awareness month in the UK. Sadly, despite being a potentially disabling condition, it is known to take 8 years on average after the onset of symptoms for someone with endometriosis to receive a diagnosis1. Improved awareness of this condition is a vital part of helping people get diagnosed and treated sooner.
What is endometriosis?
This is where endometrial tissue (the part of the body that makes up the inner lining of the womb/uterus) is found elsewhere in the body. More common places for this include other parts of the female anatomy, such as on the ovaries, fallopian tubes or nearby structural supporting ligaments. It can also affect the bowel, back passage or bladder and rarely be found even further away in the body, such as on the lungs.
What causes endometriosis?
While there are different theories for what causes endometriosis, the honest answer is that we don’t really know for sure. One theory involves something called retrograde menstruation, which essentially involves period loss leaking out backwards through the fallopian tubes instead of passing through the vagina. We do know that it can run in families, and there are risk factors that make it more likely for you to develop endometriosis2, such as:
- Starting periods early
- Going through menopause late
- Getting pregnant later in life or not being pregnant at all
- Late first sexual intercourse
- Any anatomical cause of obstruction to vaginal flow of menstrual bleeding, such as female
- genital mutilation
- White ethnicity
- Low BMI
- Smoking
- Having a woman in your immediate family with endometriosis increases your risk 6-fold
What are the symptoms of endometriosis?
It is possible for some women with endometriosis to not be aware of their condition unless it causes a knock-on problem. However, other women may experience:
- Pain. This tends to be in the pelvis or lower back and is usually worse during a period but can happen throughout the menstrual cycle. It is usually much more severe and longer-lasting than ‘regular’ period pain. Sex may also be painful both during and for hours afterwards.
- Bleeding in-between periods
- Heavy periods
- Bladder problems, such as pain while peeing
- Bowel problems, such as constipation or pain when opening your bowels
- Other symptoms such as fatigue and depression
How is endometriosis diagnosed?
This can depend on your symptoms and also what your GP finds when they examine you. Usually, a first step in investigating period problems or symptoms that sound like endometriosis is by arranging an Ultra-Sound Scan (USS) of your pelvis. This is where a radiographer uses a probe with some jelly on your abdomen. If you feel comfortable with them doing so, they will also then insert the probe (with a protective covering) in your vagina. These internal scans can sometimes give better views of certain parts of your anatomy.
Not all cases of endometriosis show up on an USS, though. So, while it can be helpful when it finds something, a normal USS does not rule out endometriosis. Depending on the level of suspicion, the next step may be to have a key hole surgery done by a Gynaecologist. This is done under general anaesthesia (meaning you are put in a medicine induced sleep by an anaesthetist) and is the best way of knowing for sure if endometriosis is present. The medical term for this is a diagnostic laparoscopy. Unlike a normal USS, a laparoscopy that doesn’t show endometriosis can be a reliable way of confidently excluding this. Another alternative to a laparoscopy may be to have an MRI scan.
What is the treatment of endometriosis?
There are various options for treatment. The best choice for you will depend on factors such as where your endometriosis is, whether you are planning on having (or growing) your family, and other potential risk factors.
Pain Relief
The usual starting point is treating the pain itself with a short trial of simple painkillers such as paracetamol and ibuprofen, if this hasn’t already been done. Sometimes stronger pain relief, such as co-codamol may be prescribed. There are risks with taking co-codamol regularly though, such as it becoming less effective with time, and becoming addicted to it.
Hormone Treatment
The next step in non-invasive options would be considering hormonal treatments. We know that hormonal contraception affects the inner lining of the womb (the endometrium), including even when it is elsewhere in the body. Hormonal contraception can reduce pain associated with endometriosis and also reduce the heaviness of periods. The National Institute of Health and Clinical Excellence has created a patient decision tool which can be very useful when wanting to explore which contraceptive options may be helpful and what risks there might be associated with each option3.
Surgery
If the above measures are ineffective, or not appropriate (for instance, if a woman is wanting to conceive, then taking contraception isn’t the most helpful!), then the next step is usually to consider key-hole surgery, or laparoscopy. If a laparoscopy is already planned in order to investigate and potentially diagnose endometriosis, then, depending on where the endometriosis is found (and of course with full patient consent prior), treatment can sometimes be performed at the same time. The treatment may involve surgically cutting the endometriosis out, or potentially burning it off (ablation therapy).
Sometimes other hormonal treatments such as gonadotrophin-releasing hormone agonists are given for three months prior to surgery when the bowel or waterworks are involved4. Hormone treatment might be given after surgery also, to help keep symptoms at bay for longer.
There are of course more severe surgical options that might be appropriate depending on where the endometriosis is, such as complete removal of the whole womb (hysterectomy).
What are the complications of endometriosis?
Apart from debilitating pain, endometriosis can also cause other issues in the body as well.
One of the most important considerations is a reduction in fertility5. While many women with endometriosis will be able to fall pregnant normally, one study of women with infertility showed that about half of them had endometriosis6.
Other complications include problems with the bowels, such as constipation, pain on opening your bowels, deep pain during intercourse, and even bleeding from the back passage during a period7.
If the endometriosis is located on the bladder, symptoms might include8:
- Bladder irritation
- Bladder urgency (needing to use the toilet quickly after the sensation of realising you need a wee comes on)
- Pain when the bladder is full
- Occasional blood in the urine during a period
- In some cases, loin pain in the area of the kidneys (either side of the mid back, near the bra strap line)
Do I have endometriosis?
The bottom line here is that severe pain, especially pain that starts before a period, or is so bad that you regularly need time off of work or studies every month, is not normal and could be a sign of endometriosis. You don’t need to just put up with it as there are treatment options that can help! If you think you might have endometriosis, or want to talk about what might be normal and what isn’t, please get in touch!
Download the CheckUp Health app now and book a video or audio call with a private GP, daytime or evening, 7 days/week. Take control of your health.
References
- Endometriosis in the UK: Time for Change – APPG on Endometriosis Inquiry Report 2020 https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf
- https://patient.info/doctor/endometriosis-pro
- https://www.nice.org.uk/guidance/ng73/resources
- https://www.nice.org.uk/guidance/ng73/chapter/Recommendations
- https://www.nhs.uk/conditions/endometriosis/complications/
- Meuleman C, Vandenabeele B, Fieuws S, Spiessens C, Timmerman D, D’Hooghe T. High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners. Fertil Steril 2009;92(1):68-74.
- https://www.endometriosis-uk.org/endometriosis-and-bowel
- https://www.endometriosis-uk.org/endometriosis-and-bladder
