But many of us still don’t really understand what endometriosis is – and how to treat it.
Our in-house GP and Medical Director, Dr Fran shares everything you need to know, including how contraception can help.
What is endometriosis?
Endometriosis is a common health condition, which affects 1 in 10 women of child bearing age. That’s 1.5 million people in the UK.
In endometriosis, cells similar to those usually found in the lining of the womb, grow in other parts of the body. These are called “endometrial deposits” and they can be found on the ovaries, bladder, bowels, pelvic and abdominal walls and in rare cases, even places like the lining of the lung.
As your body moves through it’s natural menstrual cycle, the womb lining thickens to create a nice home for a potential fertilised egg, before shedding and bleeding if no pregnancy occurs. The symptoms of endometriosis are caused by these endometrial cell deposits outside the womb responding to your menstrual cycle in the same way – thickening and then bleeding. As this occurs in places where there is less space for the cells to thicken, and nowhere for blood to escape, this causes pain, chronic inflammation and scar tissue (also known as adhesions). This contributes to the wide range of symptoms people with endometriosis may suffer from.
What are the symptoms of endometriosis?
The symptoms are really variable for each woman, and not necessarily related to how severe or how many endometrial deposits there are. Symptoms can also be very vague and overlap with other common problems such as IBS (irritable bowel syndrome) or pelvic infections.
The signs that I look out for include the following:
- Painful periods which start from 1-2 days before bleeding and continue throughout the bleed. The pain can often be debilitating, meaning women miss school, university or work regularly during their period
- Heavy periods, long periods, spotting in between periods or losing old, dark blood before your period starts
- Pain deep within your pelvis or abdomen during sex or internal medical examinations
- Pain or bleeding when going to the toilet (bladder or bowels) while on your period
- Difficulty getting pregnant. Although it is important to remember that 70% of women with endometriosis fall pregnant naturally
- Fatigue, lethargy and mood changes which are understandable when you read through the symptoms above!
What causes endometriosis?
It is very frustrating for every endometriosis sufferer and those of us who treat it, that we don’t exactly know how or why the condition happens. There are theories, but nothing has been scientifically proven.
One theory called “Retrograde Menstruation” suggests that during a period some of the womb lining travels the wrong way up the fallopian tubes and ends up depositing in the pelvis or abdomen. Another called “Metaplasia” suggests that some cells in the body are able to change to cells found in the womb lining in response to inflammation or certain toxins.
We have seen some research that shows endometriosis can run in families and there could be a genetic factor. However, none of these have been proven and the real cause could perhaps be a combination of many different ideas. At The Lowdown, we’re hoping science can help us out and finally come up with an answer!
How is endometriosis diagnosed?
The average time it takes for a woman to receive a definitive diagnosis of endometriosis is 7 years from when symptoms begin. We completely understand this leaves women feeling fed up, exhausted and perhaps even losing trust with the healthcare system.
The length of time it takes to diagnose endometriosis could be partly due to the symptoms, which can be vague and similar to other common conditions, but also because there is no simple test. There is no blood test, no clear physical examination signs and even an internal ultrasound scan may only show endometriosis if it is severe enough to cause cysts on the ovaries.
I think I have endometriosis – what next?
If having read everything so far you think you could have endometriosis, an important first step in the journey is to openly ask your GP or healthcare provider if they had considered that endometriosis could be a cause of your symptoms and start a discussion.
The “gold standard” for diagnosing endometriosis is via a laparoscopy. This is a small key hole operation in which a camera is inserted into the abdomen and pelvis to look for endometrial deposits. If these are found, they may be treated at the same time.
However, this procedure does involve risks. You will require a general anaesthetic and abdominal surgery is invasive with risks including pain, infection, bleeding and damage to organs such as perforating the bladder or bowel walls. Most women are so fed up with their symptoms they are happy to take these risks for a diagnosis, other women prefer to try treatment options first. This is a personal decision, and I’d advise you to discuss the advantages and disadvantages of both options with your doctor.
How is endometriosis treated?
Firstly, it’s important to know that endometriosis can actually get better of its own accord without treatment in some women – such a mysterious disease!
However, as the symptoms can so greatly affect your quality of life, the majority of women opt for active treatment.
Treatment options for endometriosis are:
- Pain relief – endometriosis can be exceptionally painful and medications such as anti-inflammatories (such as ibuprofen) can help relieve this
- Surgery – during a laparoscopy, endometrial deposits can be cut or burned away and any scar tissue that has formed can be removed
- Hormonal treatment – this can include hormonal contraceptives (which can be prescribed by your GP), or hormonal injections to turn off your menstrual cycle called Gonadotrophin Releasing Hormone Agonists (these are only available from hospital specialists)
- Complementary therapies – never underestimate the power of a healthy lifestyle, diet and exercise for helping to relieve pain and improve your mood – some women also find treatments including acupuncture, reflexology and homeopathy helpful
The hormonal contraceptive option is where The Lowdown’s expertise lies. Many of our users suffer from endometriosis, and are using our platform to find the most suitable method for them.
Does the pill help endometriosis?
Combined hormonal contraceptives thin out the womb lining, prevent ovulation, lighten or even stop periods. This means that endometrial deposits can become smaller without the hormonal stimulation of the menstrual cycle.
Taking the combined pill in a continuous method could offer the greatest relief in symptoms by minimising the number of bleeds you have a year. Find out more about continuous pill taking here. These benefits often lead to an improvement in symptoms and can protect your fertility by reducing inflammation and scar tissue.
Does the Mirena help endometriosis?
Yes it does too! The hormonal IUS also thins out the womb lining and typically your periods are 90% lighter. 20% of women who use the Mirena coil (a brand of hormonal IUS) will have no periods at all after 12 months, hopefully practically resolving those endometriosis symptoms experienced around period time.
Which contraception is the best?
At The Lowdown, we believe contraceptive choice should be individualised based on your preferences and desire to avoid certain side effects.
Any hormonal contraceptive can be beneficial, but here are some facts that may help you make your decision.
- Research has shown that combined hormonal contraceptives and the IUS can be used as treatment for endometriosis and are equally effective at improving symptoms
- The progestogen-only pill, implant and injection also help symptoms, but aren’t considered the “first line treatment” as there has been less research into these methods
- Scientific evidence demonstrates that combined hormonal contraception can prevent endometrial deposits from returning after surgical treatment
There is one rule I have for endometriosis sufferers, and that is to not use the copper coil (IUD). This is because its side effects include longer, heavier and more painful periods, and we don’t want bleeding from those endometrial deposits outside the womb to be longer, heavier and more painful!
You may choose to start hormonal contraception to relieve your symptoms even before a diagnosis is formally made, and this often happens in day to day life. If you choose to wait for diagnosis and treatment via a laparoscopy, specialists recommend starting hormonal contraception as soon as possible after surgical treatment. Options such as the hormonal IUS could even be inserted at the time of your surgery while you are under anaesthetic if you discuss this beforehand.
As to which hormonal contraceptive is best for you, it really is your choice. The National Institute for Health and Care Excellence (NICE) also has a fantastic resource which I often share with patients to help you make a decision.
Endometriosis can be a life changing diagnosis. Please remember you are not alone and there is a community out there to support you. For further information see Endometriosis UK and if you’d love to understand more, watch our webinar event.
- Endometriosis UK. https://www.endometriosis-uk.org
- National Institute for Health and Care Excellence CKS Summary Endometriosis. February 2020. https://cks.nice.org.uk/topics/endometriosis/
- Royal College of Obstetrics and Gynaecology. Information for you. Endometriosis. June 2018. https://www.rcog.org.uk/globalassets/documents/patients/patient-information-leaflets/gynaecology/pi-endometriosis.pdf
- BMJ (2019) Endometriosis. BMJ Best Practice. http://www.bestpractice.bmj.com
- Grandi, G., Barra, F., Ferrero, S. et al. (2019) Hormonal contraception in women with endometriosis: a systematic review. The European Journal Of Contraception & Reproductive Health Care 24(1), 61-70. Available at https://pubmed.ncbi.nlm.nih.gov/30664383/
- Kennedy, S., Bergqvist, A., Chapron, C., D’Hooghe, T., Dunselman, G., Greb, R., Saridogan, E. (2005). ESHRE guideline for the diagnosis and treatment of endometriosis. Human Reproduction,20(10), 2698-2704. doi: https://doi.org/10.1093/humrep/dei135