March is endometriosis awareness month and here at Umi we are passionate about empowering people with all the pelvic health knowledge and awareness that may be applicable to their own wellbeing and/or the wellbeing of a loved one. In this Umi Guide, that we are making available to all, we take a dive into all things endometriosis, so settle on in and read on! (To view all other Umi Guides please log in to your/sign up to an Umi Plus account)
Endometriosis comes with some striking stats;
Endometriosis affects one in 10 of all reproductive age women - that’s 176 million worldwide
The prevalence of endometriosis in women with infertility is thought to be as high as to 30–50%
Endometriosis is the second most common gynaecological condition in the UK
Endometriosis affects 1.5 million women, a similar number of women affected by diabetes
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, as yet, no definite cure.
Only 50% of women know what endometriosis is and
It takes, on average, seven and a half years to be diagnosed.
What is endometriosis?
Endometriosis is a condition in which tissue and cells similar to those that line the inside of the womb (uterus), also grow outside the womb. For example, it can be found on the fallopian tubes, bowels, abdominal wall or pelvic cavity. When women bleed during their menstrual cycle, these cells shed regardless of where they are situated. This is why symptoms are typically linked to menstruation.
Endometriosis is suspected when one or more of the following are present:
· Chronic pelvic pain
· Period pain that disrupts your normal routine and/or ability to go to school/work
· Deep pain during or after sex
· Period related bowel problems
· Period related bladder problems
· Infertility with one or more of the above
We are conditioned from a young age to expect and accept periods to be painful, however this is not normal. The truth is that it is never normal for periods to be painful, especially if that pain means you can’t function or need to rely on painkillers. If your period is negatively impacting your daily activities and/or quality of life then we highly recommend seeking support and advice from your doctor.
Advocating for yourself
If you think you may have endometriosis then you’ll need to see a gynaecologist. This can either be accessed through your GP or directly if you have means to self-fund.
When you arrive at the gynaecologist you’ll need to describe your symptoms. It can be really useful to take a diary of your symptoms from the previous few menstrual cycles, this can be done either via a period tracker app or printing off and using the Umi Menstrual Cycle Tracker at the end of this guide.
NICE recommends that an abdominal and/or pelvic and speculum examination is performed. An ultrasound scan, preferably transvaginally, is recommended to exclude endometriomas, though a normal result does not exclude them. If you are not offered an examination or scan, ask your provider why. You can ask for this to be documented in your notes, too. A laprascopy is often performed to have a look internally in the pelvic cavity to see if there is endometriosis present. If you feel as though you are not being taken seriously then ask for a second opinion and keep going until you have some answers.
A full list of accredited specialist endometriosis centres in the UK can be found online at the BSGE website.
If of interest, you can find a menstrual wellbeing toolkit for GPs and healthcare professionals here, to see what sort of thing the doctors will be looking at. (It is an ‘easy to use’, logical, evidence based resource for GPs and other primary care clinicians when diagnosing, supporting and managing the concerns of women with problems caused by menstrual dysfunction.)
Treatment is aimed at managing the symptoms of endometriosis.
Hormones – hormonal contraceptives e.g. the pill, patches or coil are often used to prevent bleeding during the menstrual cycle. This means that the endometrial tissue that grows outside the womb cannot shed and therefore cannot cause pain and symptoms.
Pain relief - when we are in a lot of recurrent pain, our bodies hold excess tension which then in itself can add to the pain cycle. Try some of these things to help manage and reduce the pain;
Pelvic health physiotherapy
Using heat (such as a hot water bottle or a bath)
Generally keeping active
Daily stretches - if you’ve not yet seen our yoga sequence for pelvic tension then check it out here
Daily relaxation e.g. with use of breathing, mindfulness, yoga, meditation
Addressing areas of excess muscle tension - check out our Umi Guide to Preventing and Relieving Pelvic Tension
Medications can be used after a discussion with your gynaecologist
Some women report that their symptoms can be altered through what they eat and drink. You would need to see a nutritionist with a special interest in women’s health for this
Menstrual Cycle Tracker
Other helpful resources to check out
If you are aged 16 years or over and living in England, don’t forget to answer the call of evidence that is open seeking to collect views on women’s health. You can submit your experience here. It closes on 30th May 2021, your voice matters.
Endometriosis: diagnosis and management NICE guideline [NG73] Published date: September 2017
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.
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.
University College London Hospitals. General information about Endometriosis. Accessed February 2014.
Diagnosis Survey. Endometriosis UK. February 2011 (A total 2890 women with endometriosis took part in a public awareness survey for Endometriosis UK)
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.
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.