Experiences with Absolute Uterine Factor Infertility
Participants described their experiences with absolute uterine factor infertility in terms of three factors: the immediate emotional impact of the diagnosis on their psychosocial wellbeing, the effect of the diagnosis on family, peer and partner relationships and the impact of the diagnosis on their female identity. The immediate emotional impact of the AUFI diagnosis was overwhelmingly negative. Because most participants had MRKH, they were diagnosed during their teenage years when they did not start having menstrual periods. Participants were given the diagnosis and told that because of AUFI, they would not be able to carry their own child. Words used to describe the emotional impact of the AUFI diagnosis included “devastating” (UTR14_GF), “difficult” (UTR02_CP) and “shocking” (UTR20_VG). One participant described her experience with the diagnosis of AUFI as follows: “When you’re told at a young age that it’s just not an option for you to have your own child– it feels like part of you is just ripped out and completely taken away.” (UTR20_VG)
Participants also described how AUFI impacted their relationships with peers, family members and romantic partners. AUFI made participants feel different and isolated from other teenage girls because they were not part of the common experience of menstruation. One participant described her experience as a teenager with AUFI in the following way: “You kind of close yourself off to other girls early from my experience because you couldn’t talk about when you got your first period. You weren’t the girl with a pad or a tampon.” (UTR02_CP)
Family members, particularly the parents of our participants, were also affected by the AUFI diagnosis. Participants described parental guilt whereby their parents thought that they had done something wrong to cause the patient to have AUFI. Participants also described how the AUFI diagnosis affected their experiences of dating, marriage, and starting a family. One participant talked about the challenge of disclosing her diagnosis to a person she was dating, her fear that she would not be accepted, and how the burden of AUFI altered her outlook on life from a very young age.
Whereas when you’re dating, you’re like, oh, I have to tell somebody I can’t ever have kids. And that’s a really big thing to accept. I mean, I would put myself in other people’s shoes and was like, could I accept that if the guy that I was dating told me he could never have children? Because I feel like most people would like to have a family. So I think that’s probably the biggest thing with my infertility experience is I was just really young. It progressively got worse with age. I figured I would probably be single my entire life. I really didn’t see myself getting married. It kind of closed off this door of what I’d always imagined – getting married and having a family. (UTR10_SP)
Participants described the diagnosis of AUFI as a challenge to their core female identity, resulting in a personal perception of being “not a real woman” (UTR04_GF). One commented:
For a really long time I felt maybe not good enough, like I wasn’t fully a woman. I felt like there was this huge piece of me missing, and I would never relate to having a period or being pregnant or just …all these huge things that are just attached to being a woman, even just having to buy pads and tampons. There is this huge part of being a woman that I would never get to experience. (UTR10_SP)