MRKH -  Information for young women

The Global MRKH Footprint from Sisters for Love MRKH Foundation on Vimeo.

https://vimeo.com/376468886

The Royal Children's Hospital, The Royal Children's Hospital Foundation in collaboration with the Sisters for Love MRKH Foundation created this film - A digital story, exposing the experiences of seven women across the globe as they tell their unique and complex story of the MRKH diagnosis.

What is MRKH – this is the name of a congenital variation that affects the female reproductive tract. Other names for this can be vaginal agenesis, uterine agenesis or mullerian agenesis, your doctor may call it something different.

MRKH stands for “Mayer Rokitansky Kuster Hauser Syndrome” named after the doctors that described it first.

If there is a term you prefer let your health professional or doctor know!

       Things to remember

• You are not alone, there are many other women who have MRKH, and if and or when you would like, a staff member at RCH can connect you with others. About 1 in 5000 women have this diagnosis

• Almost one in 100 people have a variation in their sex characteristics that affects their reproductive development

• Do things in your own time, there is no rush...

  • To have examinations

  • Start ‘dilating’ or other forms of intervention

  • Tell others about your body and or diagnosis

  • To have sex

• It’s okay to feel overwhelmed, take time to learn and understand information the doctor’s share with you. There may be a lot of information available, you can access this at your own pace

• Receiving a diagnosis of MRKH can raise many emotions, talking to someone you trust about these can be very useful. Seeking counselling or support can be very useful to identify strategies to better understand and cope.

   

  Preparing for appointments with your gynaecologist or specialist

• No question is a silly question. For some people writing questions down helps them during their appointment. Usually, the gynaecologist will give you time to talk and ask questions without your parent/guardian being present.

• If you would like to know about the different tests/interventions that your doctors are doing, ask them to explain these to you.

• Physical examinations – Sometimes examinations can be helpful to learn more about yourself with the help of a gynaecologist. You do not have to have one unless you are ready, and you can change your mind at any time.

• Thinking about sharing your diagnosis with others – some people tell friends/family, while others chose not to. There is no right or wrong. Talking to people can be helpful, there may a parent/family member, trusted adult or best friend that you feel most comfortable to talk to.

• “MRKH” can affect people in different ways. Your doctor will check other parts of your body.

• This variation occurs when the baby is developing in their mum’s uterus. In this case the reproductive system starts to grow but does not develop completely. The reproductive system typically includes ovaries, fallopian tubes uterus, cervix and vagina. People with MRKH may not have developed a complete uterus, cervix or vagina.  Some people with MRKH have only one kidney instead of two.

• Typically women with MRKH have ovaries, this means you will ovulate and some people will feel moody, have cyclic abdomen pain, & “PMT”.

• Everyone is different, mentally and physically, this makes us all unique.

• Families are formed in many ways (friendships, as partners, may include step kids, children by adoption, through surrogacy, fostering, more recently there are clinical trials for uterus transplants, or choosing not to have children). This topic can be sensitive and challenging - please contact the clinical coordinator (ph: 03 9345 7033) if you would like assistance to connect with some supports. 

    

  Further information

   

  Dilation

• It takes time – it is important to do it when you want to, not when others think you should

• There are different options around dilation and lengthening your vagina – a gynaecologist can talk about these with you

• It is normal to be unsure or even worried about whether you are doing it “right”. Speak with your gynaecologist if you are uncertain

• It’s okay to ask questions

• There are specialised physiotherapists who can also be really useful in this process (ask your gynaecologist)

• Information leaflet for tips for dilation 

       Sex

• You can have orgasms and a normal sex life!

• Sex and pleasure are for you first, then for others, only do what you are comfortable with

• You need to practice safe sex

• Be in touch with your body, it’s yours, you make the decisions

• Sex is not just penetration there are many ways to have sex

    

  Good resources are:

  Boston children’s Hospital– “Centre for young women Health”

  MRKH Australia

  Beautiful You MRKH 

    

  Parent’s information

• The most important thing is your relationship with your daughter

  There is no rush to:  

  • to have examinations
    
  • start ‘dilating’ or interventions
  • to have sex
    
    

• It’s okay to grieve and feel overwhelmed and seek support/counselling

• Your daughter may not talk about MRKH or how they are feeling, but it is worth checking in with them every now and then, even if they do not speak with you about it, it is important just knowing you are there

• Your daughter will have a normal sex life and family if she wants to have a family… families are formed in many different ways (friendships, couples, include step kids/partner, adoption, surrogacy, fostering or choosing not to have a family)

• Counselling or other forms of support like peer support can be helpful, it is important to let your daughter know that these are options – these can also be important and useful supports for you 

• Talk to your daughter about sharing this information with others, let them be in control of who to tell/not to tell