Everything you need to know about endometriosis

Actress Lena Dunham has revealed she’s undergone a full hysterectomy, after many years of pain battling the complex and misunderstood condition endometriosis.

The 31-year-old, creator and star of HBO TV series Girls, explained why she underwent the procedure to remove her cervix and uterus in an essay for Vogue, which was republished by the Endometriosis Foundation of America.

What exactly is it?

It’s actually a very common condition – one in 10 women in the UK suffer from it, and 176 million worldwide. Huge numbers, yet on average it takes 7.5 years from the onset of symptoms for women to be diagnosed. Endometriosis is when cells like the ones in the lining of the womb are found in other parts of the body, such as the ovaries, fallopian tubes, bladder, stomach or bowel.

“This tissue thickens and bleeds during your monthly cycle, however, the blood cannot escape through the vagina,” says consultant gynaecologist at Nuffield Health, Bristol, Dr Caroline Overton.”This blood becomes trapped and irritates tissue around it. This can cause pain and scar tissue.”

It usually affects women and teenage girls of a child-bearing age and, unfortunately, the cause isn’t known and there’s no definite cure.

What are the symptoms?

There are many symptoms and they can vary hugely in severity from woman to woman. Common symptoms include pain in the lower tummy, severe period pain, very heavy periods, pain during or after sex, pain going to the toilet during your period, feeling sick, constipation, diarrhoea and fatigue.

GP and medical director of Medichecks, Dr Sam Rodgers, says: “The pain from endometriosis can be really severe, and stop people leading a normal life for several days a month.”

Dunham has been hospitalised at least three times in less than a year for endometriosis, according to the Vogue article. Last April, she underwent surgery to free her ovaries from her rectal wall and was declared endometriosis-free, before being rushed to hospital shortly afterwards with complications. She had to cancel her American Lenny IRL tour and told fans she was “in the greatest amount of physical pain that I have ever experienced”.

The actress also explains how surgery revealed she had “an odd hump-like protrusion and a septum running down the middle, I have retrograde bleeding, a.k.a. my period running in reverse so that my stomach is full of blood. My ovary has settled in on the muscles around the sacral nerves in my back that allow us to walk.”

Why does it take so long for many women to get a diagnosis?

The World Endometriosis Research Foundation say there is a “general lack of awareness” from women and health care providers, because of the normalisation of symptoms, which can result in a significant delay in diagnosis. Many women simply don’t know they have it.

“Symptoms of endometriosis can be quite vague,” says Dr Rodgers. “In many women the only symptom is very painful periods, but as many women are unaware of endometriosis, many think painful periods can be normal.

“It can be difficult to get a definitive diagnosis using non-invasive testing such as an ultrasound, as this relies on seeing fluid within the pelvis. The most reliable way of diagnosing endometriosis is to see the womb lining sitting outside of the womb within the pelvis, which can be achieved through keyhole surgery. This uses a laparoscopy [a camera] to see the womb lining. However, pelvic surgery can be a daunting prospect, so this may delay people from investigating any symptoms they are experiencing.”

How does it affect fertility?

One of the main complications of having endometriosis is difficulty in getting pregnant, although many women with endometriosis do conceive successfully. The scarring in the fallopian tube can make it difficult for an egg to travel from the ovary to the womb, and can also effect egg quantity and quality.

Dr Overton says: “Many women put up with their symptoms for years, not realising the damage they are doing to their health and fertility. In most cases endometriosis is treatable, but the longer it goes undiagnosed, the more damage it may be doing to your lifestyle, internal organs and reproductive health.

“When endometriosis is left untreated, fibrosis can occur and the adhesion between organs in the pelvis can negatively impact the ovarian tubes. Not only does this make getting pregnant more difficult, but can also render women infertile.”

When is hysterectomy the answer?

Many people will be shocked to read about Dunham’s hysterectomy. It may seem drastic as she’s only 31, but her decision demonstrates just how painful and life-altering endometriosis can be. Dunham said her decision to undergo the elective surgery was a tough one, following “years of complex surgeries measuring in the double digits”.

But it’s usually an option only if you don’t want any, or more, children, or your symptoms are particularly severe. A hysterectomy also doesn’t guarantee an end to the painful symptoms – according to a paper by the University of Michigan School of Medicine, “pain comes back in up to 15 out of 100 women who have this surgery”.

There are lots of options before a hysterectomy is considered, and other treatments include medication for pain management, hormone treatment, keyhole surgery to treat an area of endometrial tissue, which can improve chances of becoming pregnant, and endometrial ablation, a procedure to remove the endometrial lining of the uterus.

Since her hysterectomy, Dunham has said she’s exploring her options for having children. “I may have felt choiceless before, but I know I have choices now,” she writes.

“Soon I’ll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs. Adoption is a thrilling truth I’ll pursue with all my might.”

To keep track of any symptoms you’re worried about , try Endometriosis UK’s online Pain and Symptom Diary.