Support
Most girls / young women and their parents/carers find MRKH very difficult to accept at first and express feelings of shock, anger, depression, isolation and rejection. Many parents also feel very guilty.
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Psychology service for females with MRKH
Through our psychology service, we offer help and advice to adolescents and young women with MRKH syndrome. We aim to provide an approachable, informed, friendly service.
Our service is available to anyone attending the gynaecology outpatient clinic who has MRKH.
MRKH can be very distressing and young women attending the psychology service may:
- find it difficult to adjust to their diagnosis
- find it difficult to talk to others about MRKH
- experience feelings of loss
- have mood swings, for example feeling low, tearful, angry and isolated
- have low self-esteem and self-worth
- experience problems with sexual identity and penetrative sex
- experience difficulties in their relationships
- have concerns about the treatment
- have concerns about infertility, IVF and surrogacy
How can the psychologist help me?
The psychologist will use a range of approaches including cognitive behavioural therapy (CBT)
and systemic therapy to help you to:
- adjust to your diagnosis
- manage negative thoughts and feelings
- deal with losses in relation to fertility and sexuality
- develop effective coping strategies
- identify sources of support
- What can I expect from the psychology service?
The psychologist will initially meet with you for about an hour and a half and identify any needs or concerns you have. After this meeting, if you decide that you would like to meet again, she will offer you a number of sessions. You can have between 2 and 12 appointments, each lasting about 50 minutes. It is possible to meet weekly, fortnightly or monthly.
Attending the psychology service involves looking at difficulties in the ‘here and now’ and thinking about how to cope with these. You do not have to talk about anything that you don’t want to.
The psychologist can also work with interpreters.
Is there anyone who is not suitable for the psychology service?
Evidence suggests that psychological support can be beneficial for women with MRKH. However, some women may find it more helpful to speak to partners, family and friends about their current difficulties and may not need a psychologist. If you live a long way from the hospital and find it difficult to attend regular appointments, the
psychologist will discuss this with you and may ask your GP to refer you to psychological services in your local area.
How can I be referred to the psychology service?
Your consultant, doctor or the clinical nurse specialist can refer you to the service when you attend your clinic appointment. Alternatively, you can ask your GP to refer to you by contacting 020 3313 5363 or by email: enquiries.drd@nhs.net
Support group
At this centre we have a support group which offers encouragement for you, your parents/carers and your partner. The group meets twice a year, in the spring and autumn.
The meeting in the spring is usually informal and offers the opportunity to meet other females with MRKH whilst the autumn meeting tends to be more formal and informative, with specialist speakers and some of our own patients who have undergone IVF surrogacy and adoption coming to share their expertise and experience with
Useful Links
Patient information leaflets
- Vaginal dilator therapy for MRKH
- MRKH psychology service
- About Mayer Rokitansky Kuster Hauser syndrome
- Mayer Rokitansky Küster Hauser syndrome (MRKH) – considerations for parenthood
- MRKH and the menopause
Gynaecology services
- Disorders of reproductive development and adolescent gynaecology at Imperial College Healthcare NHS Trust
Support Groups
- MRKH Connect
MRKH Connect – Lifelong Connections Start Here - Living MRKH
Living MRKH | Beautiful Inside & Out - Beautiful You – MRKH Foundation
Beautiful You Mrkh - Support - Mind over MRKH
MRKH Mayer Rokitansky Küster Hauser Syndrome | Mind Over MRKH Podcast and Zine - The British Society for Paediatric and Adolescent Gynaecology
BritSPAG – The British Society for Paediatric and Adolescent Gynaecology - The Vulval Pain Society
The Vulval Pain Society - The Vulval Pain Society
Other information sources
- NHS -Differences in sex development
Differences in sex development - NHS (www.nhs.uk)
Adoption
IVF – Surrogacy
- NHS – Overview of IVF
IVF - NHS (www.nhs.uk) - Gov UK Surrogacy
https://www.gov.uk/government/publications/having-a-child-through-surrogacy - Surrogacy UK (SUK):
Website: https://www.surrogacyuk.org/ - Brilliant Beginnings (BB):
Website: http://www.brilliantbeginnings.co.uk/ - Childlessness Overcome Through Surrogacy (COTS):
Website: http://www.surrogacy.org.uk/ - Human Fertilisation and Embryology Authority
HFEA: UK fertility regulator | HFEA
Womb transplant
Womb transplant UK
If you find an MRKH site which you feel has been helpful then please let us know.
Should you require further help or support do not hesitate to contact us – on 020 3313 5363 or at enquiries.drd@nhs.net
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