Spotlight:

• Endometriosis is a condition where tissue similar to the lining of the uterus grows elsewhere, such as on and around the pelvic and reproductive organs.
• Up to 10% of women at reproductive age have endometriosis [1], and it can affect women of all ages.
• Endometriosis is a common condition, affecting around 1.5 million in the UK [2], and 17% of our founding community – those who have shared personal details, experiences and clinic reviews that are powering our new approach to fertility treatment.
• Symptoms vary from person to person, most commonly it causes intense period pain.
• Research shows that there is now an average of 8 years and 10 months between someone first seeing a doctor about their symptoms and receiving a firm endometriosis diagnosis. [3]

Fertility treatments recommended for those with endometriosis who are trying to conceive could include laparoscopic surgery (keyhole surgery), intrauterine insemination (IUI), in-vitro fertilisation (IVF), egg or embryo freezing (read more about these below).

The lining of the uterus is called endometrium, it typically thickens throughout the menstrual cycle in readiness for an egg to implant, and sheds with every period. With endometriosis, similar tissue grows beyond the uterus, usually on or around the reproductive organs, including the fallopian tubes, ovaries and pelvic bowl. Unlike the endometrium within the uterus, this tissue doesn’t shed, it builds up, which can cause cysts and scarring, leading to symptoms that may impact fertility. [4]

The cause of endometriosis is unknown, and it can affect women of any age – including up to 10% of women at reproductive age [1], around 190 million globally. There are several medically researched theories as to what causes endometriosis, including links to issues with the immune system. Genetics can also play a role [5], with links shown between first- and second-degree relatives (eg. your mother, and your grandmother or aunt) who have endometriosis; as well as endometriosis affecting certain ethnic groups more than others [6].

The symptoms of endometriosis vary from person to person. Some might not have any noticeable symptoms, while others might be extremely affected. The most common symptoms include: painful and/or heavy periods; pain during or after sex; painful bowel movements; pain when urinating; chronic pelvic pain; fertility issues. [4]

Up to 50% of women with endometriosis will see the condition impact their fertility [7]. This could be influenced by the following factors:

• Impact of endometriosis on reproductive organs

The growth of endometrial tissue can cause adhesions around and distortion of the reproductive organs including the uterus and fallopian tubes. The risk of blocked fallopian tubes increases with the severity of endometriosis. These factors reduce the ease of the egg reaching the uterus to be fertilised. 

• Cysts on the ovaries

Endometriosis can lead to cysts on the ovaries, endometriomas, which can damage the ovarian tissues and follicles that hold eggs before they are released; therefore impacting egg quality and quantity.

• Immune system response

In some cases, it is thought that the endometrial tissue might trigger a heightened response from the body’s immune system, causing inflammation which could impact the reproductive system.

In the UK, getting an endometriosis diagnosis can be a lengthy and frustrating process –  research shows that there is now an average of 8 years and 10 months between someone first seeing a doctor about their symptoms and receiving a firm endometriosis diagnosis. [3]

The path usually starts with a trip to the GP, who will ask about symptoms (it might help to keep a diary) and may do a pelvic examination – GPs are not usually experts in endometriosis, therefore may not be best placed to test or help. This will be followed by a referral to a gynaecologist for further tests, which can include an ultrasound (abdominal or transvaginal), an MRI and/or laparoscopy (keyhole surgery) to assess and in some cases operate on the endometriosis tissue.

The HFEA tells the diagnosis and treatment story of Helen: