Born Without: An Interpretative phenomenological analysis of women’s experience of MRKH – Summary of Findings
Firstly, I’d like to thank all the women who took part in the study. Your honesty and contributions were greatly appreciated. Your personalities came out so strongly and the different voices and contributions you made were of great value to me. I enjoyed talking to every one of you and to be honest, I felt sad to be saying goodbye at the end of each interview!
Secondly, I would like to thank all the women who volunteered but were not contacted. In the end 41 women wrote to me. I think the number would have been even higher as after only a few hours, an update was circulated to say that I couldn’t accept any further offers as my inbox was flooded. However, this shows the need for women’s voices to be listened to and the drive within women with MRKH to have their stories heard and make a difference.
Finally, I’d like to thank Charlie Bishop, for being my inspiration and making the research possible. Through my conversations, I discovered what an amazing role-model you are to others and the huge impact you’ve already had on increasing the awareness of MRKH and supporting other women.
This piece of writing is a summary of the research article I wrote. It is based on my interviews with women from the MRKH community. It is hoped that the article will be available at a later date but currently it is being scrutinised by Birmingham City University and I have to be very careful about my online posts given the new (and somewhat strange in my opinion) rules of self-plagiarism. (Plagiarism is to be avoided because it is theft of someone’s work, therefore self-plagiarism would be theft from yourself of your own work, which is surely impossible!) Hence, this summary will reflect my findings in an easily accessible and informal manner.
Reactions to diagnosis / self-esteem and identity
Shock and devastation were common reactions to being diagnosed with MRKH. Initially after diagnosis, a few women questioned their female identities, because of their own belief about the purpose of womanhood to be a mother, or due to unhelpful and hurtful comments of those around them in response to sharing their diagnosis.
There was a desire for normalcy and a few of the women talked about grief and a sense of loss for a life that society dictates is the norm and their internal struggle with what that meant for their future.
Many women talked about their coping strategies of denial and avoidance when confronted with aspects connected to MRKH. This could be ignoring the diagnosis, avoiding conversations with others and television programmes linked to childbirth, or telling white lies to cover up feelings and hide diagnosis. Others conditioned themselves not to want children or relationships to avoid pain if these dreams were not realised.
There was a common theme of shame amongst the participants. For some women this was short lived but for others it is a feeling that they still carry with them, even if they are unable to put the origins of these emotions into words.
Experiences of treatment for MRKH
Only two women out of thirteen had been offered counselling at the point of diagnosis. Thus, ‘treatment’ overall related to the creation of a vagina. Most women had tried dilator therapy although it had not worked for everyone. Some women had felt too intimidated to ask for further help and some had gone on to have surgery. Success results were mixed. For a few women, the area had become clinical and they associated it with painful experiences for a long time afterwards. Others had successfully created a vagina using dilators or through surgery and were happy with the results.
Family and social relationships
Sharing the diagnosis was a topic that came up in every interview. Not all the women had strong family support, but the value of good support was emphasised by those who did.
Most of the women were extremely selective about who they told and what information they shared with those people. It became apparent that it was most common to tell others that they were born without a womb rather than reveal the absence of a vagina.
The main barrier to speaking publicly about the diagnosis was anxiety at how the information would be perceived. Concerns were expressed about others regarding the women as ‘freaks’ or being unable to process the information as it was too far removed from the receivers’ own experiences.
A few of the women had bad experiences of sharing with others but this tended to be with a wider audience rather than when sharing with their close friends. Many had received insensitive comments from close family and friends, especially regarding having children and when they were going to start a family.
Sharing the diagnosis was a difficult experience. Firstly, when to tell a potential partner and secondly what to tell them. Many of the women had the goal of having sex with a partner and for that partner to be unaware that anything was different about them. Most women expressed that, when they first receive the diagnosis, they worry about whether anyone will ever be able to accept them, both physically and given the knowledge of their infertility. However, the majority of stories surrounding the women’s personal lives, were happy stories of extremely understanding and supportive partners and very loving relationships.
Mental health & emotional wellbeing
All the women talked about their battles with mental health. A small number of women had self-harmed or used drugs and alcohol to cope with the pain of diagnosis. The majority felt that MRKH was viewed by medical professionals as something that impacted at the point of diagnosis and then was over once a vagina had been created. However, the lived experience was that MRKH is something that affects women throughout their lives and in different ways at different points of their lives.
Attitudes to motherhood
Not all the women had decided they wanted children and some women felt there was too much emphasis on having children within the MRKH community and not enough focus on mental wellbeing. For others, they were still undecided about whether to pursue having a family in the future. However, the route to having children is a difficult journey. The women recognised that it was an expensive process whichever option was chosen and the unfairness of this was raised. Additionally, each route has its pitfalls with parents having to legally adopt their own child if born through surrogacy or navigate the potential risks to donors and receivers of womb transplants.
Lack of professional knowledge
The most alarming finding of the study was the lack of knowledge amongst medical professionals surrounding the diagnosis and treatment of MRKH. Not one single woman felt they’d had a smooth journey to diagnosis. The youngest participant interviewed (aged 18) from the UK explained that even a year had been too long to wait and that other women with MRKH had pushed to get her treatment. She said it had taken a year to get a satisfactory explanation of the condition from a doctor. It was hard not to see a pattern amongst all the women of lack of knowledge and issues surrounding diagnosis regardless of which country they were from.
Many of the women had conducted their own research using the internet to find a diagnosis. In three cases, the women had believed that they were the only one in the world with the condition. Two had been told that explicitly and the other had assumed she was, after trying to find answers by herself for so long. For others, they had been drip-fed elements of their diagnosis by professionals but never given the name MRKH. There is a concern from these interviews that there may be other women who are alone without a diagnosis and unaware of the support out there for them. Indeed, three women had recently found MRKH Connect using the internet and self-diagnosed based on the information before contacting professionals to get confirmation they were correct.
Many women have pushed to get themselves seen by professionals, to receive treatment, to find answers and to be heard. The route to diagnosis is not the same for everyone. Some older participants had known from a young age and some had found out in their late thirties, forties and fifties! Similarly, with the younger participants, they were finding out from 18-25 which suggests that there is still a question over progress towards shorter diagnostic timescales over the past thirty years.
In the UK, the experience seemed to be that the closer women lived to London the better support and earlier diagnosis they received. Whilst there were only two women from USA, they both recognised that Boston was the main MRKH centre but one of the women highlighted that the information provided is only suitable for newly diagnosed girls. The participant from Mozambique talked about the cultural issues of getting diagnosed and how it is a taboo to talk about the condition. In Greece, the only participant felt that in her experience there was nowhere to go for specialist treatment. Whilst the participant from the Netherlands had waited a long time to get her diagnosis before finding a good support group nearby.
The international numbers are too small to be sure to what extent this a global phenomenon, but it appears to be a widespread experience that women are finding that GPs have not heard of MRKH and when women present in their clinics, GP’s are not recognising the condition. Equally, when women attend the clinic for other medical conditions, they are being asked questions about their periods even after explaining MRKH! Additionally, even some of the specialist fertility clinics in the UK are unaware of MRKH.
The message from the women interviewed with MRKH in the UK seemed to be that nationally there is an issue with receiving help and support. Once women are referred to Queen Charlotte’s Hospital in London, they are generally extremely happy with their support. They value the expertise of the staff and the support meetings. However, the distance from their own homes is an issue, with women having to take time off work to attend or spend a lot of money in travel expenses to receive help and support. Additionally, not all of them have received a referral to the hospital and are managing the impact of MRKH on their own.
Counselling had not been offered to most of the women. In the cases where women had received or sought counselling outside of the Queen Charlotte’s Hospital, again the experiences, apart from one, were negative. The counsellors seemed unprepared for talking about MRKH and saw the women as interesting subjects due to the rarity of the condition, in one case, the counsellor had cried whilst sharing her own story of miscarriage.
The findings suggest that there is a global need to better educate professionals about diagnosing MRKH and treatment pathways. Counselling should be offered along with treatment both addressing vagina creation, management of relationships and steps towards good wellbeing and mental health.
National support groups are needed. Some of the women were unaware of the support groups and had only recently found MRKH Connect but they have not actually been invited by the healthcare system to attend any groups or been passed details of them.
Information for patients is needed in a written format, whether in leaflet form or on a website for newly diagnosed women. Many of the women interviewed have unanswered questions for which they are still in search of answers.
Patient follow-up is needed. Many women felt that they had been left alone to manage their symptoms and to deal with the impact of MRKH. There was a sense that they have been forgotten about. One participant explained how she was eventually offered counselling, yet after 6 sessions the feedback to her was that she would be fine from thenceforth. Others felt it was strange that nobody had contacted them to see if the creation of their neo-vagina was successful.
Global awareness of MRKH is needed. There is a sense of secrecy and taboo surrounding MRKH. Only one participant said that she talks about it openly outside of the MRKH community, for the rest it is a dark secret that they feel unable to share with the wider public. There is a sense amongst the women that it should form part of school curricula and the training programs for GPs, especially those pursuing a career in gynaecology.
Whilst the nature of the report is to point out issues and areas for development, it is important to acknowledge the great strength shown by the women interviewed with MRKH. One participant described herself and others as ‘warriors’ and this came out through all the interviews. Although the women have experienced hardships and dealt with information that is difficult to process, every single one is a fighter and spoke positively about their journey towards acceptance. The women may be at different stages of the journey and on different paths but overall, they are finding their own ways through life and each one is an inspiration.
Birmingham City University MSc Student