Thursday 20 June 2019

Endometriosis: Is radical surgery the answer?

American actress Lena Dunham has revealed she's had her womb removed to cope with the pain of the condition. But is that a step too far for most women?

Lena Dunham
Lena Dunham
Triona Collins pictured in Midleton, Co Cork

Arlene Harris

Lena Dunham is no stranger to controversy and last week made headlines once again with the announcement that she had undergone a hysterectomy following years of living with excruciating pain.

The 31-year-old American actress, who does not have children, suffered from a number of issues including endometriosis, a disease where tissue similar to the lining of the uterus grows elsewhere in the body.

But can a hysterectomy cure the crippling pain, which often leaves sufferers unable to attend school, college or work and unable to maintain a sexual relationship? Dunham isn't sure, but was determined to take some action against the pain which sometimes left her 'delirious'.

Writing in Vogue magazine, the Girls creator describes how the pain was "unbearable" but says she is aware "that a hysterectomy isn't the right choice for everyone - and it's not a guarantee that the pain will disappear".

Triona Collins pictured in Midleton, Co Cork
Triona Collins pictured in Midleton, Co Cork

"In addition to endometrial disease, an odd hump-like protrusion and a septum running down the middle, I have retrograde bleeding, aka my period running in reverse so that my stomach is full of blood," she continues.

"My ovary has settled in on the muscles around the sacral nerves in my back that allow us to walk. Let's please not even talk about my uterine lining. The only beautiful detail is that the organ - which is meant to be shaped like a light bulb - was shaped like a heart."

Despite always longing to be a mother, after a decade of pain and nine surgical procedures, Lena couldn't take any more when she finally checked into hospital and announced "I am not leaving until they stop this pain or take my uterus".

However, while many reports claimed that Dunham underwent surgery purely to eradicate endometriosis, experts including Dr Ken Sinervo, medical director at the Center for Endometriosis Care in Atlanta, Georgia, USA says these were not helpful.

"The way the Lena Dunham essay has been covered by the media, which fails to report her own words (indicating that she had secondary pathologies and did not necessarily have a hysterectomy as a 'cure for endo' - which it is not, is damaging to our efforts to educate that hysterectomy, as once mistakenly believed, is not a cure for endometriosis," he says.

"Excision is the best surgical approach and while a hysterectomy may be necessary in select, rare or extreme cases, it is not a solution for endometriosis."

But while Professor Mary Wingfield, clinical director of Merrion Fertility Clinic in Dublin, agrees that a hysterectomy is an extreme method of attempting to put an end to endometrial pain, she also says it can be an option.

"Hysterectomy can be a treatment for endometriosis but it is a radical treatment and only considered when other treatments have failed," says the professor, author of The Fertility Handbook.

"This is usually in women who have completed their families but thankfully very few women with endometriosis need this invasive surgery. Hysterectomy involves removing the womb so it stops the woman's periods; however, she may still have pain due to endometriosis in other locations. If her ovaries are removed at the same time, she will undergo early menopause, so this needs to be carefully considered.

"Again, it is important to state that these types of cases are very rare and the majority of women can be managed with simpler treatments."

Aware of this fact, Triona Collins made the decision to have a hysterectomy three years ago because, unlike Dunham, she already had children. And while it was made clear to her that this wouldn't cure her endometriosis, she wanted to put an end to painful periods.

"I have had endometriosis since my first period when I was 13 as I had crippling pain and sickness from day one and extremely heavy periods," says the 37-year-old. "I knew I was different from my friends as they would take paracetamol (for period pain) and would be fine, whereas no matter what I took I was still in terrible pain and would be vomiting and close to fainting with my periods. I often had to get an injection from my GP just to get through.

"I was diagnosed with ovarian cysts in 2000 and in 2001 I was diagnosed with endometriosis after a laparoscopy. Then in 2008 I had a scan and the doctor discovered that my left ovary had fused to my womb and the wall of my abdomen so I had surgery to remove endo from my womb, ovaries, tubes, bladder and bowel. And then in 2010, I had to give up my job as a hairdresser as I was off every few days with pain, so I couldn't commit."

Endometriosis is one of the leading causes of infertility amongst women and Triona, who is married to Tommy, believed that she couldn't conceive. But against all the odds, she became pregnant not long after leaving her job. Sadly she lost her baby, but became pregnant again a few months later and in October 2012 her daughter Lola (5) was born, followed swiftly by Travis (4) in December 2013.

"Shortly after I finished working I discovered that I was expecting my first child, which was a miracle as I was told I would never have children," says Triona. "I had two early scans and everything was fine but at 11 weeks I had a little bleed, was scanned and told there was no heartbeat. I had lost my baby and my whole world crumbled around me. I had miscarried because of endometriosis and was in constant pain afterwards, which matched the pain in my heart.

"But 10 months later I fell pregnant with my second child and my little miracle Lola was born, perfectly healthy and happy. Then four months later I was pregnant again and my second miracle, Travis, was born - we are so thankful to have our two amazing children, they are our sunshine."

With her family complete, the Cork woman made the same decision as Lena Dunham and in 2015, underwent a hysterectomy. But while she was pain-free for the first year, the endometriosis has returned and become part and parcel of her life once more.

"In 2015 I had a hysterectomy which took my womb and tubes but I still have my ovaries," she says. "The surgeon said the only thing that a hysterectomy guarantees is that I won't have any more periods and I was totally pain free for a year. But then it was back to square one and it took two years to get an appointment to go back to see the my gynaecologist.

"They told me that surgery hadn't worked and recommended an induced menopause. I refused because I am highly sensitive to hormones and everything I have ever taken has made me unwell and nauseous - so I was referred to a pain specialist and after years of being dismissed as exaggerating my symptoms and being told to 'just get pregnant' it was a huge thing for a doctor to say that he believed I was in pain. The poor man didn't know how to react when I cried."

Triona is now on morphine twice a day with extra shots when needed. She is also taking other medication and while she is still in pain, remains positive and says this is a crucial element in surviving endometriosis.

"I have been to hell and back with this disease - it has taken my work which I loved, my baby and sometimes my joy but I will not allow it to beat me," she vows.

"I wouldn't be here today without the love and support of my husband and my wonderful family, especially my parents. Along with the medication, I use a heat-pad, a Tens machine, hot baths, hot water bottle and pelvic physiotherapy but none of this takes away the pain - just eases it. But my advice to other women would be to get a good support system, whether it be family, friends or a support group.

"The Endometriosis Association of Ireland has been a huge help and through their Facebook page I have been able to get so many answers and advice on which questions to ask doctors. I would say to fight for what you believe you need to happen. We know our bodies and we know when something isn't right."

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