Saturday 25 May 2019

'At 16 I was told I had no womb - I went numb' - Irish woman (33) on shocking diagnosis

Lynda Ritchie was born without a uterus but has finally made peace with the idea that she'll never be a mother

Lynda Ritchie from Ballymun, who suffers from a rare condition where she was born without a womb. Photo: Frank McGrath
Lynda Ritchie from Ballymun, who suffers from a rare condition where she was born without a womb. Photo: Frank McGrath

Patricia Murphy

Lynda Ritchie was just 16 when she was first told she would never be able to carry children of her own because she was born without a uterus.

The teenager had not yet had her period and a series of internal examinations and ultrasounds revealed that her uterus, cervix and the top of her vagina had not developed when she was in her mother's womb.

Doctors in Dublin's Coombe Women and Infants Hospital diagnosed care assistant Lynda, who is now 33, with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome in 2001, a disorder in which a woman's reproductive organs are absent or underdeveloped.

The condition does not affect external genitalia, which is why MRKH is often diagnosed following gynaecological investigations when young women have not menstruated by the time they reach their late teens.

"When the doctors sat my mam and me down and told us that I didn't have a womb I was just numb," says Lynda, who lives in Ballymun.

"My mam was crying, but I just remember being numb.

"I have wanted to be a mam since I was 12 and the day I was diagnosed, I felt like that was all ripped away.

"I had dreams of getting married and having three little kids, and I felt like my future was gone. It was such a difficult thing to cope with at 16.

"When I was 17, my sister got pregnant and that was so hard for me. I was so jealous I was ashamed of myself for it. It was the hardest time for me."

Lynda's vagina was also found to be shorter than average as the top of the organ was underdeveloped.

This meant that for almost a year after her diagnosis, Lynda had to use a dilator each night, which she says made her feel like a freak.

"I had been intimate with someone and it wasn't very uncomfortable. I just thought it was the normal pain you experience during sex the first time and I didn't think it was out of the ordinary.

"But because the top of my vagina hadn't developed, doctors said I could have surgery to fix it, or do dilation.

"At the time I was just so desperate to be fixed, so desperate to be normal. But in the end we chose dilation, which was the less drastic option," Lynda says.

"Every night for nine months I would have to dilate to stretch it and it was emotional because I just thought: 'Why am I the one who has to do this?'

"I felt like such a freak. I was coping with depression and I was referred to a grief counsellor who asked me to imagine my baby, and give it a name so I could come to terms with never being able to meet them.

"That was a horrible experience for me and made me feel so much worse."

The condition, which affects one in 4,500 women, can be isolating and Lynda said she felt like men wouldn't want to be with her because she was "broken".

"After I was diagnosed I didn't have sex again until I was 18. I was afraid they would notice. I thought to myself, 'Who would want to be with me, I'm broken.'

When Lydia met someone new, she says she would panic and worry how and when she would tell them she didn't have a womb.

"It was always a battle of 'Will I tell him now at the very beginning, or will I wait?'

"When I was diagnosed, there was no Facebook, there was no way to connect with other people with this condition. I felt so alone," she says.

A glimmer of hope came for Lynda in 2014 when she read about a successful uterus transplant that had helped a woman with MRKH give birth to her own child in Sweden.

She applied to be a subject in a similar research trial in Britain, but unfortunately, in the end she was not selected.

In November 2017, doctors at Baylor University Medical Centre in Dallas, Texas, celebrated the birth of the first American child to be born during the hospital's ongoing uterus transplant clinical trial.

Since then, another child has been born to an MRKH sufferer in Dallas who underwent a uterus transplant in the two years before giving birth.

The first stage of the clinical trial involved ten women between the ages of 20 and 35 born with a defective uterus or without a womb.

The ten women received transplants from both deceased and living organ donors, but the trial's successful pregnancies were to recipients who had received a uterus from a living donor.

Dr Liza Johannesson, a uterus transplant surgeon and obstetrician-gynaecologist on the Baylor University team says that although they are making medical history, the emotional aspect to the trial's success has been much more fulfilling.

"The amazing thing about this trial is that the living donors involved were women who had already had their families and were willing to help others in this incredible way.

"When the first baby was born in November it was a hugely emotional moment for everyone in that room. These women believed they would never have be able to carry their own child or to experience pregnancy and it's really a privilege to be a part of something like this both in a professional way, but also on a personal level," she says.

Although Lynda doesn't believe uterus transplants will be available to Irish women while she is young enough to be a suitable candidate, she says the advances in medicine do offer hope to women with her condition.

"It makes me really hopeful for the teenagers being diagnosed now," Lynda says.

"I am in Facebook groups where girls have gotten womb transplants and experienced their first period ever. They were so excited.

"The fact that babies have been born in the US and parts of Europe after womb transplants is incredible and offers huge hope to younger women with the condition. It means that a diagnosis of MRKH won't be as devastating for women diagnosed in the future."

After years of turmoil, Lynda says she has finally made peace with the fact that she will never be a mother, which she says has been a huge relief. The 33-year-old has found love with her partner Kenneth Kerrigan, 39, whom she met two years ago.

"I met my boyfriend online. When we were chatting, he told me early on that he had a disability; he had cerebral palsy, and right then I told him that I kind of did too. It as such a relief to get that out of the way so early in a relationship. It turned out that he never wanted children.

"Right now I'm really happy. I have two boxer pups who are my world - Chips and Lucy. For so long I thought I was totally on my own with this, but I don't feel that way anymore.

"I don't know what changed in me, but I began to realise that I could have a very fulfilling life without kids - I am lucky to be an auntie and I love my nieces and nephews.

"Right now, I'm in a good place but it took me 15 years to get here. MRKH is a hard thing to grow to accept."


What is  mayer-rokitansky- KÜster-Hauser?

• MRKH is a reproductive condition in which women are born with an underdeveloped or absent uterus, cervix and vagina.

• The condition is categorised into two types. Type one affects just the reproductive organs, while type two is more serious as sufferers can be born with underdeveloped or absent kidneys, skeletal abnormalities, heart defects and hearing loss.

• Approximately one in 4,500 newborns are born with MRKH, which is often diagnosed following gynaecological investigations when women don't get their period by the time they are in their late teens.

• Women with MRKH are born with normal external genitals and ovaries, which means they go through the milestones of puberty such as developing breasts, body hair, and the widening of the hips. This is another reason why the condition can be hard to diagnose in early life.

• Medical advances in the area of uterus transplants are offering hope to sufferers of MRKH. The first US child to be born to an MRKH sufferer following a uterus transplant was delivered in Dallas, Texas in November 2017.

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