Being irreparably damaged
When accessing healthcare, some of them were told that surgery was not an option since they were too young to undergo a procedure that could cause even bigger problems in comparison with their current situation. This development, meaning that they would have to live with sPOP for the rest of their lives, left them in an impossible situation. Phrases like “ruined life” and “wanting my life back” revealed the women’s sense of being damaged for life.
Taken by surprise
There was a general unawareness of the existence of the condition ‘pelvic organ prolapse’ until the first symptoms were discovered. The feeling of being taken by a dreadful surprise was prominent in the women’s stories. This consisted of surprise at not knowing their own bodies and a lack of warning that something like this could happen.
Not knowing their body
Unfamiliarity with pelvic floor anatomy was frequently described, regarding both the normal anatomical position of the uterus and the appearance and structure of the vaginal walls. Not knowing what constituted normal anatomy made it difficult for the women to understand the abnormalities they now had to contend with.
“...I have personally asked about my cervix, which I think is sitting low since giving birth… I wonder how you know whether it is a lateral defect and what it means? And I personally have no idea of how the vaginal walls should look/feel when they are “normal” and I don’t know where a cervix should be positioned, I just haven’t thought about that kind of thing before.” (Participant 2)
Not being warned
Vaginal birth was the norm of discourse and considered the normal way to give birth, and no one had told the women that it might be associated with an increased likelihood of injury. The women expressed that they had not been warned during prenatal education courses, which caused feelings of being misled. Anger and astonishment arose, vaginal birth was described as a fatal mistake, with many women saying that if they were to give birth again they would prefer to undergo a Caesarean section. One woman went as far as saying she would not have had children if she had known about the risks.
“Everything is just so normal, if I had known before what would have been normal, I would probably not have had children or fought for a Caesarian! Nope, it is impossible to imagine the consequences these problems lead to. Would be easier to have an injury in absolutely any other body part!” (Participant 7)
The women experienced that sPOP restricted their lives dramatically, which they had to adapt to. Their daily lives were seriously affected by a dysfunctional body, constant discomfort, and worrying about sPOP worsening from both a short- and a long-term perspective. Moreover, sPOP also impinged on intimate relationships.
“I had quite a big cystocele, it almost bulged outside. I had difficulty emptying my bladder, always needed to pee and I got a urinary tract and kidney infection as a result. I had to insert my fingers into the vagina and push against it when doing a poo to help to evacuate my bowels.” (Participant 3)
Having constant discomfort
The women described feelings of constant discomfort which severely disrupted daily life, such as pressure, heaviness, fullness, and the sensation that something was falling out of the vagina. Some women complained about vaginal flatus, and an awful “open” feeling with a dragging sensation in the vagina. Some women also spoke of itching, soreness in the vagina and rectum, and lower back and abdominal pain.
“…I am probably also most upset about being so open. Feels like I have something in the way when I go to the toilet, I want to feel to see if something has fallen down but, each time I feel, everything seems to be in the right position. I also take in a lot of air. I go around queefing to get the air out, I feel really stupid....” (Participant 17)
This constant discomfort was compounded by basic day-to day activities such as cooking and walking, and even standing or sitting. The women described an inability to use tampons because of a prolapsed uterus, which prevented them from doing exercise and other physical activities.
“I also have problems with my pelvis area 2 years after having my baby. … it hurts during intercourse so we more or less don’t have a sex life... I stopped feeling like it because of all my genital troubles.... I mourn that...” (Participant 11)
Moreover, the women commonly expressed fear of abandonment by their partner due to the inability to have sex. Ideas about allowing their partners to have sex with someone else just for the relationship’s sake were discussed in the thread.
“At some point he will feel sad about not being allowed to have sex. Should I then let him go out with other people or just be alone?” (Participant 27)
Worry about worsening
The women were worried about sPOP worsening. This restricted them as they lived in permanent fear that doing regular household tasks like lifting groceries, or activities that were considered simple parental responsibilities like playing with children, might worsen the symptoms. Having to renounce activities and constantly worrying about making things worse led to frustration, anger, sadness and a feeling of being inadequate mothers.
“... I don’t dare lift heavy things, become constipated or exercise etc. I am also young (26) ...I can’t help my 3-year old up onto the swing …it hurts my heart so much: ( . My little girl, who is a month old, already feels heavy to carry…how will I be able to help my children and take care of them? How will I manage my everyday life with two small children? I want to play with my children and feel a sense of freedom in my body.” (Participant 23)
In a long-term perspective, the women feared the future and especially the potentially worsening symptoms of their condition due to the menopause and the ageing process. Moreover, the women expressed that they were afraid of being further damaged following another pregnancy and birth, or, if they had undergone surgery, compromising this if they were to give birth again.
“Will I be able to have children without destroying my body even more?... I’m so worried and now my partner wants children and I am so afraid! Afraid about destroying my life.” (Participant 9)
Neglected by healthcare
There was a discrepancy between women’s experiences of their problem and how they were treated by the healthcare system. This discrepancy was considered as due to the fact that healthcare professionals demonstrated inability to give proper information, but also a tendency to trivialize and neglect both the condition and the women. This negligence reduced opportunities to get help and led to feelings of not being taken seriously.
Lack of information
It was considered important to receive a proper diagnosis, treatment and psychological support, which was sought from different types of healthcare providers. However, the women frequently did not receive proper information. For example, some received completely different diagnoses from different physicians and physiotherapists. Postnatal healthcare was described as a catastrophe, and women expressed shock at how little some healthcare professionals knew about sPOP. Some women stated that they had been convinced to give birth vaginally and now that they had been damaged, no-one took responsibility or had the competence to deal with the problem. The women wanted to know more about the condition to prevent the damage getting worse, such as advice on lifestyle changes and how to adjust physical activity in relation to sPOP. However, it was found difficult to access good, unambiguous information. Instead, information from doctors was inconsistent, unclear and difficult to understand, and advice was not in line with what women found out by themselves from independent sources. This left them with more questions than answers.
“I don’t get any clear information from the doctors... They think I am young and they don’t want to cause bigger problems… What do they mean by bigger problems? Is an operation to the back wall so complicated? Do you become so tight? And do most of them become so much worse after surgery at the front that they pee themselves?” (Participant 4)
Women felt that sPOP was a condition that was trivialized and that the healthcare providers acted as if the women were “making a big thing out of it”. There were often discrepancies between the physician’s account of signs and symptoms and the women’s own experiences. Physicians explained sPOP as a natural condition after vaginal birth, using expressions that belittled and normalized the problem like “it doesn’t look too bad”, “minimal collapse of front wall”, “nothing abnormal” and that “POP is very common”. During the pelvic examination, the physician compared the woman with other patients and comment that “he had seen worse”. However, contrary to healthcare professionals’ opinions, women did not perceive the symptoms of POP as normal or natural, and this attitude was experienced as humiliating and discouraging.
Women expressed that sPOP caused psychological harm and distress in multiple ways such as distorted body-image and negative feelings toward their own genitalia. Further, living with sPOP invaded them mentally with intense grief and anxiety.
Distorted body image
sPOP negatively affected the women’s body image and they saw no beauty in themselves. Living with sPOP was seen as having “an old lady’s disease”, and feelings of disgust and embarrassment with themselves were highlighted in the thread. Comparing themselves before and after birth nurtured a negative attitude and an overt dissatisfaction towards their own vagina and difficulties accepting the new appearance of their genitalia, as one woman expressed:
“I feel disgusting and have difficulty accepting how I look.” (Participant 6)
Being mentally broken
Women expressed that sPOP had broken them mentally, and the psychological impact of sPOP was often considered even worse than the physical problems. All their thoughts were focused on their bothersome symptoms. Anxiety and panic attacks were common and could be induced by simple everyday things like toilet visits. The happiness of becoming a parent was overshadowed by the feeling that they had become disabled because of sPOP. Moreover, an inability to participate in activities they had enjoyed before, such as high-intensity sports or a job as a training instructor, which were a key part of the women’s identity, had the potential to cause an identity crisis, leading to depression.
The psychological impact of sPOP caused women to take sick leave due to depression and some were put on antidepressants. Forum members expressed the feeling that sPOP had turned their life into a living hell, and some of the women even experienced suicidal thoughts.
“I cry during all my spare time when my partner isn’t home... I am so depressed that I can hardly cope with life.... I would rather not live any longer but need to for my son... Thoughts of suicide... Feeling of not wanting to live any more.... I ask myself how to cope with this hell every bloody damned day...Want to be happy... Soon won’t be able to take any more...Living with thoughts about my vagina 99% of the day... (Participant 11).
Despite the psychological distress, women had to cope with the condition and the forum helped them to keep looking ahead in life. Sharing helpful tips and happy personal stories about good outcomes of surgery, and just being a part of a group that reminded them that they were not alone, encouraged the women and made them feel better.