EXPLAINER: Why some women with endometriosis, like Lena Dunham, need full hysterectomies.

Video by MWN

At the age of 31, after battling years of acute and intense pain, Lena Dunham made the decision to get a full hysterectomy.

In a piece for this month’s Vogue, she outlines how she got to a point where removing her uterus was a viable and necessary option to ease the endometriosis symptoms that were consuming her life.

“In August [last year], the pain becomes unbearable,” Dunham writes. “I am delirious with it, and the doctors can’t really explain. The ultrasound shows no cysts, no free fluid, and certainly no baby. But that doesn’t help the fact that it hurts so bad that the human voices around me have become a sort of nonsense Teletubbies singsong. With pain like this, I will never be able to be anyone’s mother. Even if I could get pregnant, there’s nothing I can offer.”

By November, she asked her doctor if her uterus can and will come out.

“She says, ‘Let’s wait and see.’

“Two days later (which has always been my definition of “wait and see”; I am not a patient girl) I check myself into the hospital and announce I am not leaving until they stop this pain or take my uterus. No, really, take her.”

LISTEN: Why we need to talk about Endo more. Post continues after audio.

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Though Dunham admits the choice wasn’t easy, it wasn’t one she has since regretted or doubted. Of course, navigating the notion you no longer have your uterus is complex, but Dunham notes it will not stop her wanting children one day.

“I am already mourning, but I am not in doubt.

“I may have felt choiceless before, but I know I have choices now. Soon I’ll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs.”

While Dunham’s decision to have her uterus removed was deeply personal, in making it public, she’s ignited a conversation about endometriosis, fertility, pain, hysterectomies and the intersection between all four.

But at a local level, how common are hysterectomies? If you’re a woman who has endometriosis, how do you know if your pain levels are beyond the point of regular surgery? And more than that, when it happens, what happens next?

We break down everything you need to know about hysterectomies for both the curious and the affected.

A quick recap: What is endometriosis?

Talking to Mamamia, Dr Jason Abbott, Medical Director of Endometriosis Australia, says endometriosis is a disease in which the tissue that is similar to the lining of the uterus grows outside it in other parts of the body.

It is estimated that 10 per cent of women suffer with endometriosis at some point in their life, with common problems including pelvic pain and infertility.

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If I have endo, will I need a hysterectomy?

No, it is quite rare for a woman with endometriosis to need a hysterectomy.

Dr Abbott tells Mamamia that a decision to have a hysterectomy should “not be undertaken lightly and only after consideration of the individual factors related to that particular woman”.

“Hysterectomy is a very final procedure and for women with endometriosis – it may mean removing an organ that is intact normal,” he says, stressing there are many options for women with endometriosis before a hysterectomy is posed as an option.

Most women with endometriosis will initially have a laparoscopy as a means of removing the endometriosis and quelling pain.

“Because endometriosis is defined by tissue similar to the lining of the uterus being present outside of the uterus, the aim would be for suppression by medications or removal by surgery of these inflammatory lesions. Women should be aiming for the fewest invasive procedures as possible, since recurrent surgery may further exacerbate chronic pain problems.”

Removing the uterus will not lead to menopause, Dr Abbott says, because despite it being a reproductive organ, “this is controlled by the ovaries”.

How common are hysterectomies?

About 30,000 hysterectomies are done each year according to the Australian Institute of Health and Welfare, with endometriosis contributing to about eight per cent of these.

If you do the maths, less than 2500 hysterectomies are being done every year for endometriosis patients.

“It is important that women be offered fertility conserving procedures, medications and allied health options for symptom control prior to this final procedure,” Dr Abbott says.

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Lena Dunham. Image via Instagram.

Do hysterectomies cure endometriosis?

Hysterectomies do not necessarily cure endometriosis. Dr Abbott says our genes play "a key role" in the recurrence of the disease.

"In the case of poor Lena Dunham who has suffered immensely, she is likely to have a severe and aggressive form of endometriosis and has noted that even her hysterectomy did not stop the disease coming back. Women with endometriosis should note that hysterectomy is not curative of endometriosis and they should seek advice from an expert in endometriosis care before considering this most final of procedures."

For Dunham, it may not cure her pain, but is likely to ease the depths of which she felt it.

Is it possible for a woman to have children after a hysterectomy?

After her hysterectomy, Lena notes she will not be able to carry her own baby. However, because she still has her ovaries, it may be possible for eggs to be removed to make embryos for a surrogate to carry her baby.

As she writes for Vogue: "Your brain, unaware that the rest of the apparatus has gone, in theory keeps firing up your eggs every month, to be released and reabsorbed into the cavern."

"Other options," Dr Abbott notes, "for family would include adoption or fostering. It is also important to note that she may choose not to have children at all and for any one who chooses this, they should be given support and a notation that this is completely normal. Women should not be measured in anyway by their ability to reproduce."

Listen to the full discussion about endometriosis on Mamamia Out Loud here:

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