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.
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.
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.”