Born without a womb: 'It may take time to adjust, but you’re still you'

A teenage girl’s failure to menstruate may be a sign she does not have a uterus. A recent successful transplant offers new hope of carrying a child

Grace Davidson, with husband Angus and baby Amy Isabel and sister Amy, is the first woman in Britain to give birth after a womb transplant. Picture: Joe Daniel/PA Wire

The heartwarming story of the first baby born in Britain as a result of a womb transplant recently made global headlines. Grace Davidson, 36, who has a rare condition, Mayer Rokitansky Küster Hauser Syndrome (MRKH), was born without a womb. 

However, medical advances allowed Davidson’s sister to donate her womb, and, two years later, she gave birth to a daughter, Amy Isabel.

Consultant paediatric and adolescent gynaecologist Nikita Deegan runs a clinic in Dublin’s Rotunda Hospital for girls and women diagnosed with MRKH. “MRKH affects approximately one in every 5,000 female births,” she says. 

“It’s a condition in which women are born without a womb, cervix, or upper vagina. There are two types. Type one affects just the reproductive organs, while type two often means girls are also born with differences in their spine, heart, kidneys, or hearing.”

The Rotunda is the only specialist multi-disciplinary clinic in Ireland for MRKH patients aged 15 and older. A multi-disciplinary service in CHI Temple St sees patients up to the age of 16.

No such services were available when 35-year-old Anna*, from Dublin, was diagnosed with MRKH 18 years ago. She remembers her shock when a gynaecologist told her she had no womb and would never be able to carry a child.

“I couldn’t take it in,” Anna says. “I just wanted her to stop talking, so I could get out of there.”

When she left the consultation room, there was nowhere to go for support. “MRKH is a strange diagnosis, because you’re not sick and there’s nothing you immediately need to do about it,” she says. 

“You’re in the same body you’ve always been in, but you have upsetting new information about it. There were no services for people with MRKH in Ireland back then, and I used to wonder if I was the only person in the country with it.”

Her path to diagnosis had begun as most do: She hadn’t ever had a period.

“That made me feel different even before my diagnosis,” she says. “All of my friends had got theirs. Why had mine not come yet?”

Her GP referred her to a gynaecologist and a follow-up MRI found that she had no womb.

“I was just distraught when I heard this and couldn’t stop crying,” says Anna. “It felt totally earth-shattering.”

Because people with MRKH have normal external genitals and ovaries, they typically experience puberty like everyone else.

“They develop breasts and body hair, but they don’t get a menstrual period, and it’s only when they haven’t had one by their mid-teens that anyone realises there’s cause for concern,” Deegan says.

“Anyone who hasn’t had a period by age 15 should see their GP. It doesn’t mean they have MRKH. There are other possible reasons, such as diet, weight, or exercise. But tests need to be carried out to check.”

MRKH patients are informed about the physical implications of the condition.

“They are told they won’t have periods, won’t be able to become pregnant spontaneously, or carry a pregnancy, and will likely have difficulty with penetrative vaginal sex, due to the underdevelopment of their vagina,” says Deegan.

Debbie Browne, the clinical midwife specialist in adolescent gynaecology at the Rotunda, points out that it’s still possible for women with MRKH to enjoy sex.

“For most women, sexual pleasure comes from the clitoris more than the vagina and the anatomy of the vulva. Clitoral function and ability to orgasm in individuals with MRKH should be the same,” she says.

“But if they would like to have penetrative vaginal sex, we will explain that they can lengthen their vagina to make that sex more comfortable and pleasurable. We will also guide them through the process of doing that.”

This process is called vaginal dilation, and involves women inserting a dilator (a plastic mould) into their vagina every day for months to stretch the vagina’s skin gradually.

The psychological impact

If it’s difficult to grapple with the physical implications of MRKH, it can be just as challenging to deal with the psychological impact.

“Adolescence can be tough enough as teenagers explore their identity and sexuality,” says Dr Susan Carroll, a senior clinical psychologist who works with Deegan and Browne in the Rotunda. 

“If you suddenly learn you’re infertile and your vagina had developed differently, it can be devastating. Adding to that, teenagers like to fit in. It can be hard not to feel part of conversations about periods or to feel your experience is not that of your friends.”

Disclosing their diagnosis isn’t always easy, either. According to Carroll, this can require overcoming two significant barriers. Firstly, there’s the fact that many people are shy or embarrassed about discussing their bodies. They don’t have much experience of doing so and can consequently lack the vocabulary required to talk about MRKH.

Secondly, they are likely to be worried about how the other person might react, particularly if that person is a romantic partner with whom they hope to be physically intimate.

Other problems can emerge later in life. “There can be a sense of grief and loss, and friends having babies can trigger difficult feelings,” says Carroll. “And if women with MRKH decide to try to have children, their path might not be straightforward, which can have a psychological impact, too.”

Intimacy fears

Anna struggled in the years following her diagnosis. “For a long time, I felt as if the light had gone out in my world,” she says.

She found it difficult to form romantic relationships, because she felt uncomfortable in her own body.

“I became withdrawn and felt like I was on the outside looking in,” she says. “I still did the usual things — going to school and college, spending time with friends, and playing sports — but I didn’t enjoy it. And I found it impossible to talk about MRKH. I didn’t know who would understand how I was feeling.”

She eventually found Facebook groups and attended support days in Britain and the US. They proved to be transformative for her.

“I didn’t have to explain myself to these people,” she says. “They got it — I no longer felt so alone. I’ve since made great friends within that community and they have helped me become more confident and comfortable in my body.

I used to feel shame at what it couldn’t do, but I’m entirely unashamed now. The light inside me has turned back on.

Aware that the psychological toll of MRKH is compounded by the isolation many sufferers feel, the team at the Rotunda now organise an annual MRKH support day in Ireland. The next one is scheduled to take place on September 26.

This is not the only support the team offers to MRKH patients. Their multidisciplinary service includes gynaecology, fertility, genetics, nursing and midwifery, and clinical psychology.

Operation ‘a risk’

Grace and Angus Davidson with baby Amy Isabel. Picture: Joe Daniel/Womb Transplant UK/PA Wire.

The paediatric, adolescent, and complex gynaecology team at the Rotunda celebrated the news of the birth of baby Amy Isabel. “MRKH takes away people’s choices, and it’s great when developments like this give them more options,” says Carroll.

“Womb transplants are still experimental in the UK and could well be a viable option for Irish women with MRKH in the future.”

However, Deegan thinks that a transplant will always remain a significant medical procedure that involves risks for both the donor (if they are living) and the recipient. “Both would need to be fit and well and undergo a rigorous assessment to see if they were suitable candidates,” she says. “Not everyone would be, and not everyone would want to put themselves through such a physical ordeal.”

She believes it’s unlikely the surgery will ever be available in Ireland, given that the number of people with MRKH here is small, and the number of those who would want to be, or would be, suitable for a womb transplant would be even smaller.

“Complex surgery like this should be performed by a team in a dedicated centre with the expertise and volume to ensure the best possible outcome,” she says.

“For Irish people, that means the procedure being done abroad.”

Grace and Angus Davidson (front) with the hospital team at the birth of baby Amy Isabel.Picture: Womb Transplant UK/PA Wire

A womb transplant isn’t the only way people with MRKH can have a biological child. Because most people with MRKH have functioning ovaries and a normal egg reserve, IVF can help them create embryos. Those embryos can then be transferred to a gestational surrogate to carry the pregnancy.

Deegan would like for it to be made easier for people with MRKH to access these alternative routes to parenthood.

The team at the Rotunda would like to see changes in how MRKH is understood and treated in Ireland.

“Increased education about the condition would mean that MRKH was more widely recognised by the public and healthcare professionals,” says Carroll.

“People with MRKH would then be directed to support services more quickly. We would like more doctors and patients to know that our services are there for them.”

Additional resources and funding would also be helpful. “We want everyone with MRKH to have access to specialist services and not be put on a waiting list to receive them,” says Deegan.

Browne adds that her wish is for those who are diagnosed to realise that MRKH does not define them. “This diagnosis doesn’t change who you are,” she says.

“It may take time to adjust to this new information about your body, but you’re still you.”

As for Anna, time and therapy have helped her come to terms with MRKH. “I don’t have a partner at the moment, but I am open to meeting someone,” she says.

“I’m not sure about having children, but my life is full of meaning, joy, and laughter. There are moments when it can be hard, but I have people around me who can help, and I’m not afraid to ask when I need it.”

• * Name has been changed 

What to know about MRKH

It’s a congenital condition in which female children are born without a womb, cervix or upper vagina.

There are two types of MRKH. Type one affects just the reproductive organs. Type two affects the reproductive organs while type two affects the reproductive organs and other parts of the body, such as the spine, heart, kidneys and the hearing system.

No official figures exist regarding the number of girls and women with MRKH in Ireland but internationally, it is estimated that the condition affects one in every 5,000 female births.

Girls with MRKH have normal external genitals and ovaries and typically experience puberty like everyone else, developing breasts and body hair, for example.

The lack of a womb means these girls will never have a period. They won’t be able to get pregnant without assistance, and they will be unable to carry a pregnancy.

Women with the condition may also have difficulty with penetrative sex due to the underdevelopment of their vagina. They can still enjoy clitoral stimulation and orgasm. Vaginal dilation can alleviate the discomfort of penetrative vaginal sex.

MRKH can take a significant psychological toll on girls and women. They can struggle with feelings of grief and loss or feel they are different or deficient in some way, which can affect their relationships with others, particularly romantically.

Women with MRKH can undergo IVF, and a gestational surrogate can carry the resulting embryos. If they are suitable candidates, they can now also consider a womb transplant.