Hi MRKH Community. I asked Morten Herlin to talk to you about his recent paper that examined long-term outcomes from various procedures used to create a vaginal canal. After a few missed Facebook phone calls, we ended up communicating via Messenger, and I was pleasantly surprised to find someone who is also exceptionally interested in MRKH and Genetics… I think we could talk for hours about this… Amy Lossie

Hi Everyone,

This is my first blog here at Beautiful You MRKH, and first I would like to use the opportunity to express my excitement for the work Amy and Christina have done establishing this community. This is truly an important job in order to raise awareness and provide a safe place in which you can ask questions and share your thoughts with each other.

My name is Morten Krogh Herlin, 29, and I am from Denmark. I am a medical doctor and currently doing my PhD at the Department of Pediatrics and Adolescent Medicine, Aarhus University Hospital. Back in 2013 when I was a medical student I first got involved with MRKH research. After attending an MRKH meeting in Poland in 2014 with both patients and health professionals, I came up with the idea to establish a large nationwide population-based cohort on MRKH syndrome named DanMRKH.

The public health care system in Denmark provides a universal fully tax-funded health care with free access to hospitals and primary medical care. Together with the thorough registration of diagnoses, it provides an optimal setting for doing population-based research, which is generally lacking in the published MRKH literature. First, we reported on the prevalence and patient characteristics. This study (link) is one of only two nationwide population-based studies in the literature to investigate the prevalence of MRKH syndrome (both reporting 1 in 5000 female live births).

Just recently, we published the second study (link) looking at the long-term anatomical outcome following the treatment of vaginal agenesis in MRKH syndrome by reviewing the patients’ medical records. Owing to the nationwide setting, we could include patients from all specialized centres in Denmark that perform different kinds of treatments. The most frequent treatments used were split-skin vaginoplasty (McIndoe operation), self-dilation (Frank’s method) and coital dilation (dilation by intercourse, d’Alberton’s method), which were included in the statistical analysis. Our conclusions support the current recommendation by the American College of Obstetricians and Gynecologists (ACOG) (link) of dilation as the first-line therapy, owing to similar outcomes in vaginal length and much fewer complications compared with surgery. Interestingly, we found that coital dilation had the best outcome and lowest complication rate of all three treatments. This treatment has not been given much focus in the literature, but seems like a promising alternative to self-dilation in patients able to have regular sexual activity. We speculate that the close support of a partner is helpful overcoming the challenges during treatment. Unfortunately, this treatment is not an option for everyone, which has to be considered when discussing the different treatment options.

It should be noted that as our study only used the information found in the patients’ medical records, we were not able to include more subjective measures such as patient satisfaction. Patient satisfaction is the single most important factor for treatment outcomes and we hope to include those questions in a future study. It should be noted that no patients in our cohort had the Vecchietti operation (laparoscopic traction vaginoplasty), which is performed in other countries with promising results.

Finally, it is important to emphasize that there is no perfect treatment to fit all. Some experience difficulties going through dilation owing to different reasons (e.g. discomfort, pain, emotional aspects). These experiences may reduce enthusiasm for continuing dilation, resulting in an unsatisfactory outcome and negative feelings of the procedure for the individual. In these individuals, surgery might be a better option. It is important to stress the necessity of frequent and regular dilation after the surgery to avoid shrinkage of the vagina, which could result in additional surgeries (in our study 33% of patients who underwent surgery needed at least one additional operation). Through patient-centered care and careful dialogue between people with MRKH and clinicians, we hope in the future to be able to identify the most promising, individualized treatment options for each person. Our study and that conducted by the ACOG, the most comprehensive literature review to date (link), conclude that dilation should be first-line offering, as dilation is equally effective and has the lowest complication rate of the treatments we tested.

Now, that the cohort is established, we hope to be able to continue with other studies focusing on various aspects of MRKH syndrome, including genetics, psychosexual aspects and more detailed clinical follow-up including patient satisfaction following treatment. This will, however, take some time to set up.

Thanks for reading!

All the best,

Morten Krogh Herlin

MD, PhD student

Pediatrics and Adolescent Medicine

Aarhus University Hospital

Denmark