March 2019 is Endometriosis Awareness Month in the UK.
As someone who has this condition I'm quite aware of the general lack of knowledge of this even in healthcare professionals. This post is to give some information about the condition and ways to help.
The following information has been gathered from Endometriosis UK
What is Endometriosis?
Endometriosis (pronounced en- doh – mee – tree – oh – sis) is a condition where cells similar to the ones in the lining of the uterus (womb) called the endometrium, are found elsewhere in the body outside of the uterus.
Each month these cells react in the same way to the female hormonal changes to those in the womb, building up and then breaking down and bleeding. This creates a chronic inflammatory reaction that can result in internal scar tissue. However, these external similar cells have no way to exit the body unlike the cells in the uterine endometrium that leave the body as a period.
It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity.
It’s important to remember that:
- Endometriosis is not an infection
- Endometriosis is not contagious
- Endometriosis is not cancer
Currently there is no cure for endometriosis.
Endometriosis can have a significant impact on a woman’s life in a number of ways, including:
- Chronic pain
- Fatigue/lack of energy
- Problems with a couple’s sex life/relationships
- An inability to conceive
- Difficulty in fulfilling work and social commitments
However, with the right endometriosis treatment, many of these issues can be addressed, and the symptoms of endometriosis made more manageable.
Symptoms of Endometriosis
This can include:
- Painful periods
- Painful ovulation
- heavy bleeding
- chronic pelvic pain
- Pain during/after sexual intercourse
- Painful bowel movements or urination
Causes of Endometriosis
There is no clear evidence to show why endometriosis starts in some women and not in others. Some schools of thought are linked with the lymphatic system, auto-immune issues, genetic predisposition and environmental causes among other things. However, this is still being researched and there is no firm cause found as yet.
This condition can take quite some time to be definitively diagnosed. Doctors need to rule out other causes to the symptoms felt. Some doctors are unfortunately quite unaware of the condition and the impact it can have on a woman's mental health as well as life.
Some MRI scans can pick up where there is endometriosis, particularly adhesions and scars. However the only way to definitively diagnose the condition is by laparoscopy, which is a keyhole surgery that puts a camera into the pelvic cavity via a small hole near to the belly button.
On average it can take almost 7.5 years for some women to get properly diagnosed with endometriosis!!
Personally, my last gynaecologist had a very dismissive attitude towards me having the condition and refused to even do the procedure to properly diagnose ("what's the point, it'll just come back" he said). I went and found another gynae quite quickly who has been excellent. So my advice is keep on the issue and if your doctor won't listen go to another one who will.
Treatments for Endometriosis
There is no cure for endometriosis but the symptoms can be managed using the following treatment options.
- Hormonal treatment
- Pain relief
- Complementary Therapies (e.g reflexology, fertility massage, acupuncture)
- Nutritional therapies
- Talk therapies
The exact options for each woman is decided with the endometriosis specialist/gynaecologist as surgery may not work for some (due to complications with other body parts from the endometriosis adhesions) and for others hormonal treatments might be contraindicated for other reasons.
The following information is from the Endometriosis UK website as the latest facts about the condition:
The latest facts and figures about endometriosis.
- 1 in 10 women of reproductive age in the UK suffer from endometriosis.
- 10% of women world wide have endometriosis - that’s 176 million worldwide.
- The prevalence of endometriosis in women with infertility be as high as to 30–50%.
- Endometriosis is the second most common gynaecological condition in the UK.
- Endometriosis affects 1.5 miliion women, a similar number of women affected by diabetes.
- On average it takes 7.5 years from onset of symptoms to get a diagnosis.
- Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
- The cause of endometriosis is unknown and there is no definite cure.
References for Endometriosis Facts and Figures
1. Rogers PA, D'Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.
2. 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.
3. University College London Hospitals. General information about Endometriosis. Accessed February 2014.
4. Diabetes UK: Diabetes prevalence 2012. (April 2012). Diabetes affects around 2.9 million people, of which slightly less than half of this are women.
5. Diagnosis Survey. Endometriosis UK. February 2011.
A total 2890 women with endometriosis took part in a public awareness survey for Endometriosis UK. The average time given for diagnosis time from symptoms to diagnosis was 7.5 years. A similar finding of 7.4 years was found in:
Arruda MS, Petta CA, Abrão MS, Benetti‐Pinto CL. Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Hum Reprod 2003;18(4):756-759.
6. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012;27(5):1292-9.