“I never had a single doubt about having children,” wrote Lena Dunham, about her decision to undergo a hysterectomy at the age of 31. The actor, who has endometriosis, explained that she did not make the decision lightly. “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.”
Doctors found that in addition to endometriosis, where tissue that behaves like the lining of the womb is found outside of the womb, she also had retrograde bleeding - where her period ran in reverse, meaning her stomach was “full of blood”.
Dunham wrote that following the surgery to remove her uterus, she is hopeful that her ovaries might still contain eggs and is also considering adoption. In light of her poignant piece, we spoke to four women about what they want others to know about having the surgery.
1. ‘Don’t view it as an exhausting battle.’
Elizabeth Sparkes had a hysterectomy two weeks ago and says “it was the best option” for her. It’s worth noting that this surgery is not a cure for endometriosis, which affects one in 10 women of reproductive age in the UK. (If you’d like to find out more about the condition, you can read more here.)
The 36-year-old lived with endometriosis symptoms from the age of 12 but wasn’t diagnosed until she was 26. After having two children, one naturally and one through IVF, Elizabeth made the tough call to have a hysterectomy.
She wants other women to know that while extreme, sometimes this form of treatment really is the best option. Her advice is simple: “Try not to see it as a battle, which is kind of exhausting. Instead, view it as a challenge.”
Self-care is also incredibly important to Elizabeth. “For me the whole journey has been made easier by self-care steps like meditation, not asking others’ opinions too much, listening to my body and being mindful of my thoughts - for example, not seeing it as a fight.”
2. ‘Try to be positive.’
Hazel Galloway was diagnosed with cervical cancer when she was 26. One month later she had a hysterectomy to remove the cancer from her body.
Hazel, who lives in Leeds and is now cancer-free, says a positive outlook really helped her through this difficult time. “I viewed it as: this is the best way to deal with something to ensure long-term health,” she explains. “It made me reevaluate how I live my life and has helped me focus on exercise, eating better and not over-working. Life is short so you should spend time doing the things you enjoy.”
Her surgery happened quickly which meant she didn’t really have time to consider the repercussions of having her uterus removed. She only began thinking about the effects while recuperating.
“Being in recovery, while everyone else was at work, I had a lot of time to think about my own life ahead of me. I never thought at the age of 26 I’d be thinking that I can’t have children. But everyone’s life has a different path and it’s something I’ve just had to come to terms with.”
For information and support following a cervical cancer diagnosis, visit Jo’s Cervical Cancer Trust.
3. ‘You won’t be any less feminine.’
Rae Martin, 55, from Herne Bay had a hysterectomy at the age of 34 after suffering with heavy periods for years. She had children in her early twenties, but still worried that having her womb removed would take away her femininity.
The social media consultant now describes her hysterectomy as “the best thing I’ve ever done,” as before surgery her periods were so heavy that she had to plan her life around going to the toilet.
Her advice for others considering surgery is “don’t be scared”.
She says: “I was so frightened because I thought I wasn’t a woman, I wouldn’t feel feminine, I was frightened that I’d be put into the change [early menopause]. But I wasn’t, they saved my ovaries so I had a normal menopause. Having a hysterectomy gave me my life back.”
4. ‘Ask for therapy afterwards.’
Elizabeth Broadhurst, 40, from Suffolk, was just 33 when she had a hysterectomy. She experienced symptoms of endometriosis for 21 years prior to being diagnosed, which included pain during sex, bleeding between periods and seven heartbreaking miscarriages. At the worst point, she was bleeding for 24 days of the month. “I wanted to be a mum so much,” she says. “I was being defined by the fact I wanted to be a mum and was so blinkered by it that I couldn’t see what I was doing to my health.”
After taking medication to ease her symptoms, Liz realised she could never go back to the level of pain she had been experienced before. When the medication became less effective, doctors gave her the opportunity to have a hysterectomy and within a couple of months she was on the operating table having her womb, ovaries and part of her bowel removed. “I felt at that point that having it done would relieve me from all the pain,” she explains. “I didn’t understand just how mentally challenging it was going to be afterwards.”
Post-surgery Liz says she experienced PTSD and found it very difficult to be around pregnant women or babies. She wishes she had been offered therapy or counselling after, as the mental pain overwhelmed her. “It’s the hardest thing I’ve ever had to deal with,” she says. “In the end I paid for my own counselling.”
Her advice to other women is: ask for help and ask for therapy. “You know your body and you know what you can take,” she says. “It’s atrocious that we go through this, but there are many positives that come afterwards. Try to look for the positives in the darker days.”
Liz is running the Brighton Marathon for Endometriosis UK. You can donate to the cause here. She also blogs here.