Patient experiences of being advised by a healthcare professional to … – BioMed Central

Among those who were advised by a healthcare professional to get pregnant to manage or treat endometriosis, a total of 1570 participants responded to the open-ended survey question How did the advice to consider getting pregnant or having a baby impact your life in the next 12 months?. Seven major themes were identified in the responses to this question (see Fig.1).

Some participants responses indicated that the advice to consider getting pregnant had an impact on their knowledge about endometriosis, fertility and pregnancy. After receiving the advice to get pregnant, some participants stated that they felt their knowledge was improved. Other participants stated that they knew pregnancy wasnt a cure for endometriosis and sought information to refute the advice they were given. They mentioned feeling disappointed, misinformed, surprised, irritated, angry, offended and frustrated on receiving this incorrect advice.

Didnt take it [the advice] on board as Ive read numerous times its [pregnancy is] not proven as a treatment [for endometriosis].

Some respondents acknowledged that the advice to get pregnant was given to address fertility concerns, but they were not seeking fertility advice at the time. However, other participants did believe pregnancy would alleviate their symptoms or felt they should have received advice to consider having a baby earlier.

Just that I knew I would probably have a hard time falling pregnant, but it may give me some relief for a few years.

Many participants indicated that their health professionals advice to conceive, prompted them to try for conception or pursue treatments such as surgery to facilitate conception. Participants also reported using artificial reproductive techniques [30] such as in-vitro fertilisation (IVF) and freezing eggs for future pregnancy. Some participants described feeling stressed or pressured for a baby and rushed into considering pregnancy.

At the moment we are trying to seek fertility treatment as we have been unsuccessful for the past 2 years in trying to conceive.

Participants reported concern about their ability to have children in the future. Some indicated that they were unsure whether they wanted children and yet others felt that they had no choice but to consider having a baby. Some participants had adopted a baby or used surrogacy to complete their family. A few even described becoming obsessed with the idea of having a baby.

I became obsessed with babies, pregnant women, getting pregnant, the thought that I would never be able to give birth to my own children.

A small number of participants reported being happy with the advice. Among participants who did have a baby, post-partum issues such as worsening of endo symptoms and not receiving post-partum care for endometriosis management were raised as a concern.

Some participants described the advice to have a baby as unsuitable or inappropriate for their situation and rejected it. They reported not [being] in a position to have children or not ready for a baby or were too young to have children. People indicated being single or not being in a relationship in which they wanted a baby.

Didnt take it [the advice] on board.

I was 13. It wasnt appropriate.

I ignored it [the advice to get pregnant] and continued with my high school studies.

Others were still at university with no financial independence and felt that the advice to have a baby was inappropriate for their circumstances.

Given that I was 19 at the time, I knew that in the future [I] wanted to be a mother but [I] knew that it wasnt at that stage in my life yet.

I was 21, single and at uni so it simply wasnt an option.

Yet others disregarded the advice as they already had children, felt they were getting too old to have children or had decided not to have children at all. Some respondents mentioned being too unwell to have a baby.

As bad as I felt I knew in my heart I wouldnt be well enough to take care of a baby. I could barely walk [two and a half] weeks out of the month.

A small number of participants regretted not following the advice, stating that they made the wrong choice.

Participants reported that advice to become pregnant or have a baby impacted their lifestyle, finances, career and major life events. They described how the advice to have children prompted major life changes, including searching for a suitable partner, marrying earlier than planned, moving country, considering having children earlier than planned, considering IVF treatment sooner rather than later, and putting off major expenses such as buying a house.

Brought forward plans to have a baby by several years, despite reservations of my fianc. I felt quite stressed and that it was a race against time to conceive.

I rushed my plans over the next 5 years.

Some participants reported stressful financial impacts, including affordability issues concerning ART procedures such as IVF.

After 6 months of trying, I couldnt get pregnant naturally, so we started IVF. First IVF resulted in [an] ectopic pregnancy which was very painful. 2 years later and after another 6 stimulated cycles of IVF, the endo grew back into my bowel requiring another large bowel resection and removal of other organs. Another 2 stimulated IVF cycles after that. So, 9 IVF rounds in total, we are broke financially, emotionally and physically.

Participants described needing to take time off work as affecting their career and that planning a family required them to re-evaluate their career.

Participants reported that the advice they were given impacted their other experiences with the healthcare system. They mentioned delayed diagnosis, unmet needs, and feelings about interacting with healthcare professionals. Participants reported a mismatch between what they wanted (e.g., pain management) and the advice they were provided.

The pain and other issues I was experiencing werent dealt with to an adequate level.

The fact that I wasnt given any advice suitable to me was very upsetting. I travelled & spent a lot of [dollars] trying to find a practitioner to help with pain management.

Others reported that prescribed treatments didnt work well for them (e.g., hormonal treatment). A few indicated seeking a second opinion as they were dissatisfied with the advice to get pregnant. Others turned to alternative medicine to manage their condition. Many participants expressed that such experiences led them to lose faith in the medical profession while others mentioned that they avoided going to the doctor or changed their healthcare professional.

I ignored it [the advice to get pregnant] and continued with my high school studies. But it likely led to me actively avoiding having to visit that GP.

Some participants reflected on a delay in diagnosis or being diagnosed with other conditions before receiving their endometriosis diagnosis.

The first time [I] complained about the pain in my mid-twenties, [I] was told it was just my body and no one checked to see if [I] had endo, so I lost a tube, and the disease decimated my egg reserve, not enough information.

Some participants reported having a positive experience with healthcare professionals around receiving the advice. They were looking for fertility advice, were satisfied that fertility issues were addressed and reported that their doctor was supportive.

Fertility issues and endometriosis were diagnosed and treated, and I had a baby. Obviously, that advice isnt going to be right for everyone. In my circumstances wanting to get pregnant led me to finding out I had endometriosis.

Many responses touched on the theme of mental health impacts of the advice to get pregnant and have a baby. Participants reported the advice had impacts such as being anxious, panicked, stressed and/or depressed. Some people required help from a psychologist.

It [having a baby] was in my mind every day and added a significant amount of stress to day-to-day life. It is a huge decision to make, endometriosis or not. I was very confused and depressed.

Depressed at the prospect [I] may never have children.

It was a nightmare for me and something that impacted me greatly on an emotional level.

Frustration. Feeling invisible. Feeling irrelevant. Angry. Disappointed. Deflated. Seen as a baby making oven instead of being seen as a person.

Additionally, participants described feelings of isolation, dismissal, and loneliness about being given this advice. Respondents reported having negative self-beliefs such as feeling powerless, low self-esteem and feeling un-womanly when their fertility was affected due to endometriosis.

The advice participants received impacted partner/spouse relations, family, friends and social relationships. Those with partners reported that discussing the pregnancy advice with their partner was stressful and couples felt pressured to have a baby.

I talked with my husband but decided we didnt want to be pressured into having a child when we werent ready just because of endometriosis.

Some participants also reported that their relationship was adversely impacted by the advice due to differences in partner desires or readiness to have a child.

It ended up ruining my relationship as I felt a huge pressure to have kids young and my partner couldnt understand the intense conversation at a young age.

Some participants also described negative impacts on their sexual relationships. They stated that they experienced painful sex due to endometriosis. Given the pain, the rush for a baby added further stress.

I cant really have sex because of the pain. [My partner] knew this, but still thought I should have a kid. This triggered depression around my sexual dysfunction and inability to be in a normal sexual relationship.

Participants who were not in relationships in which they wanted to have a child also described strain.

I was in an abusive relationship. The nurse said it in front of my partner who then decided I no longer needed OCP. I fell pregnant on the first cycle but luckily for my own safety found out 2 weeks after leaving him. Terminated pregnancy.

Participants indicated that they also experienced challenges with other relationships, feeling as if family members didnt understand their struggles. Some said that they experienced family pressure to find a suitable partner to have a baby with.

When I told my parents, I could feel their hope that I might find an older man who could look after me and with whom I might start a family with. I didnt feel pressure to find this person, but I could tell thats what they wanted for me and put that pressure on myself, whilst at the same time thinking that no man would want to be with someone who had so many health problems. I was very lost.

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Patient experiences of being advised by a healthcare professional to ... - BioMed Central