Hope for girls born without a vagina

It has been four years since Julian Peter had her vagina canal constructed. The first attempt, done in 2008, failed, but the second one was successful.

Julian is a 32-year-old woman. Born with no uterus, no vagina, no fallopian tubes and only one kidney. She falls under the bracket of those who suffer from Mayer-Rokitansky-Kuster-Hauser (MRKH); a female congenital disorder associated with an underdeveloped genital system.

Dr Njeri Chege, a consultant obstetrician gynaecologist at Naivasha Referral Hospital, says the condition involves an absent or underdeveloped vagina. It can also involve other reproductive organs, including the uterus and the cervix.

The second type of MRKH, which Julian has, includes other structures outside the reproductive system. They can involve rib deformities, congenital heart abnormalities and urological (pelvic kidneys and horseshoe kidneys) conditions.

Dr Njeri explains that a physical examination can reveal a blind vaginal pouch or, in the cases of complete absence of the vagina, a dimple can be seen where the vagina should be. 

Julian became aware of her situation when she was only 17 years old. It’s hard to tell you have the condition until you get to the age of puberty.

“I was in Form 3 then. I recall the doctor saying I had to have surgery. The doctors believed my vagina was just closed from the outside. They were to do the opening of the vaginal canal. But it failed,” she says.

“I did another scan, which confirmed I was born without the reproductive organs and with one kidney.” 

SYMPTOMS OF MRKH

One of the symptoms associated with MRKH is not receiving your first period at age 15-17 years.

These girls, Dr Njeri says, have normal secondary sexual characteristics: normal breast development, normal height, normal hair distribution and hips development.

The only thing is that they have not received their menses. The presence of these other female secondary sexual characteristics is because 78 per cent of these girls have normal ovaries that produce hormones responsible for the changes. 

Some may present with cyclical abdominal pain. It’s important to note that 7-10 per cent of these girls have a functioning endometrium (uterine lining that’s shed during menses). This means the functioning endometrium will be shedding, but because there’s no vagina or it’s underdeveloped, there’s no patent pathway, so the contents accumulate, giving the cyclical abdominal pains. 

It is also impossible to conceive due to the underdeveloped vagina and sometimes uterus. Difficult or no intercourse at all is another problem. The absent vaginal pouch, Dr Njeri says, presents a challenge during intercourse, and penetration may not occur or it may be quite painful for the woman. 

“It’s important to remember in type 2 MRHK, there’s extra-genital involvement of the urological system. Hence some patients may present with recurrent UTIs, urinary incontinence, and so on,” she says.  

Julian’s life completely changed when she received the news that she had MRKH. It affected her mentally.  

 At some point, she felt like the doctor gave her the wrong diagnosis.

“I hoped it was a bad dream that I would wake up from. I struggled with the whole idea. Like any other woman, I  had a plan,” Julian says.

“A plan to have children of my own. Two boys, and to raise them up in a beautiful family. But it appears God had other plans for me. It took a while but I accepted this is who I am.”

Since she found out she has MRKH, It was never a topic of conversation in her family. For so long, she thought they never cared. But she later came to understand everybody was walking their own journey through her condition.

“Just as I had my own, my mother had, too. But I needed somebody who would understand me as a patient. Someone who had the same condition as I did. And in 2014, I connected with other women facing the same problem. By now, I had made peace with the condition,” she says.

To understand the absence of a vagina in this condition, Dr Njeri mentions the vulva, what is seen when you look at the female private part. It consists of the vaginal lips (labia majora and minora), the clitoris, the urethral opening (for peeing) and the opening to the vagina (where menses drain from, the penis penetrates during intercourse and the baby passes through during delivery). 

The vagina, she says, is inside and is a canal. “To visualise the vagina, we use what is called a speculum. When we say the vaginal is absent, we mean the canal, the inside. All these external structures, the lips, the clitoris, the urethra — all of them are normal and present. It’s the canal that is absent,” she says.

WHAT CAUSES THE CONDITION

The exact cause of MRKH has not been identified, but genetic mutations have been implicated.

“It’s psychologically disturbing and definitely affects the self-esteem and confidence of these girls,” Dr Njeri says.

“They may even blame and hate themselves. This is why adequate counselling is important to let them know they can have a normal sexual life and even a reproductive life with the use of ART (assisted reproductive techniques).”

For Julian, she was not able to have penetrative sex until she had her second surgery in Arusha at Tanzania Maternity Africa. She was fortunate enough not to pay for the surgery.

Dr Breen Michael from Madagascar, who works with the World Health Organisation, catered for everything.

“He had done surgery for a woman with a similar issue as mine in Zambia. That lady connected us to him. And I’m grateful for Dr Breen because that surgery was a life-changing experience,” Julian says.

Julian says she was mentally prepared in the event the second surgery did not work.

“If you are not prepared, you will not hack it. I was at the hospital for a whole month. I would be taken back to the theatre every four days for cleaning and checkup. That is not an easy fit.”

Since she had her vagina constructed, she has been able to have penetrative sex.

The sex, she says, is not painful and there have been no complications at all. The purpose of creating the canal, she adds, was to enable her to have penetrative sex.

Julian is currently in a relationship. They have been friends since 2011. Her boyfriend knew about her condition way before they even started dating.

“I’m also that kind of a person who won’t tie you down if you want to walk away. I live a day at a time. If tomorrow you feel like it’s not working, I will release you,” she says.

“Remember my life is all out there and there are those who might not be comfortable living that kind of life with me. If that person is to stay, let them stay because they want to.”

TREATMENTS AVAILABLE

Dr Njeri says treatment options are there, and they are mainly meant to restore sexual functions.

“Every woman desires a healthy, satisfying sex life. There’s some psychological discomfort that’d naturally happen in a woman who cannot have a healthy sex life due to this disorder,” she says.

“It’s however worth noting that once treatment has been done (surgical or non-surgical), a woman can completely enjoy her sex life.”

Treatment can be done surgically or non-surgically. Non-surgical, she explains, is fronted as the first line. It involves gently dilating or opening up the vagina using special dilators. It’s a process that’s done gradually and requires good compliance and patience. If the patient has a partner, she can use his penis (encourage gentle intercourse) to serially dilate the vagina. 

Surgical reconstruction can be offered in patients whose non-surgical mode of treatment has failed, in patients not keen on attempting the non-surgical method or in those not compliant.

“It is important for patients to be thoroughly counselled that even after the surgical repair, they will be required to use the dilators postoperatively to avoid closure (stenosis) of the newly constructed vaginal opening,” she says. 

This condition, she adds, may require management by various teams, including urogynaecologists, psychiatrists, endocrinologists and reconstructive surgeons. 

And because of the underdeveloped or absent vagina, uterus and sometimes cervix, it’s unfortunate that natural conception is not possible. Most patients, however, have normal functioning ovaries and, therefore, can undergo ART that would involve egg harvesting and use of a gestational carrier (surrogate). 

Dr Njeri mentions that there’s research going on around the possibility of uterine transplant in these women. 

They may also choose to adopt, a path Julian intends to pursue. And even though her sister is living her dream, married with two boys, this has not stopped Julian from living a beautiful life. She is happy for her.

“There is more to life than this condition. I am the host to the tiny condition, I am not the condition. Since you are the host, you can control what happens in your life. People will handle you based on how you handle yourself,” she says.

LESSONS LEARNED

“Sometimes in life, things happen not because you wanted them to happen but they had to happen and there is nothing you can do but learn to be strong for yourself and others. Nobody will live your life,” Julian says.

She keeps very few friends as a person. They are not judgemental but it’s the outside world that makes life unbearable, with some believing you performed multiple abortions, resulting in you not being able to bear children.

“It’s a crime in Africa not to have kids. Everybody will judge you for not being able to have kids,” she says. 

“Like when I went public the first time, people talked behind my back but I refused to let it get to me. Don’t judge people. You don’t know their story or what they go through behind closed doors.” 

Julian’s advice to parents is to be supportive of their children through the journey. As for the government, it should make this condition payable through NHIF cards.

Julian says it is time as a society we learn to support people around us. Not because of something they are going through but just out of goodwill.

“Let us also understand children are a gift from God. It’s not given that a woman will carry a baby and a man is able to father one. I believe there are many men out here going through infertility issues and as a people, we have failed to support them,” she says.

“Family members even make people feel worse instead of making their journey easier. It is time we learn to make people’s journeys easier. We have women out here crying for babies, men crying for babies, but what comments do we make?” 

Julian calls on people to be sensitive to other people’s needs because each and every person deserves a good life, with or without kids, single or married.

“It is wrong for people to think that if you don’t have a kid you don’t deserve a good life. Bills are not only paid for children. I have a life of my own, too. Some comments just come out rudely and insensitive,” she says.    BY THE STAR