Table 5.
Themes Generated From Participant Interviews
| Theme | Subtheme | Exemplar Quotes | Participant |
|---|---|---|---|
| Abnormal uterine bleeding and kidney health | |||
| Absence of menses | “...when I lost my kidney function around [age] 20... the menstruation stopped, so I have not been having periods for like I think three or four years. And... when I had a new kidney again, then the menstruation started to [come] back.” | P5 | |
| “...because of like all the medications I was starting and the fact that I got sick, and I lost a lot of weight initially... I didn’t have my period for probably like six or seven months when I first got sick.” | P4 | ||
| Irregular menses | “...the transplant wasn’t perfect, so I still was having my ups and downs, and my period was still irregular due to the rejections and just not having a good transplant.” | P1 | |
| Heavy bleeding | “...after the kidney transplant, I started having heavy period[s], but it was too much, so [my hemoglobin levels] dropped to 7-8 [g/dL], very tiring really.” | P6 | |
| “…my periods were very sporadic. They were very heavy with large - and again TMI - very large clots... at 14… after starting dialysis after a few months.” | P1 | ||
| Prolonged bleeding | “My period didn’t stop let's say [for] like six, almost six months or five months. I used to have like a period for two weeks or three weeks, stopped for a few days, and come back again. That was horrible, horrible experience.” | P6 | |
| Decision-making in contraceptive use | |||
| Reasons to use preferred form of contraception | “I really like not having a period which is probably the main reason why I have continued to have the IUD… [I]t’s just nice to not have to like manage a period and... not have underwear get accidentally ruined, not have to buy period products, not have to worry about having a period like when you’re on vacation or something like that... and it’s also just nice for [my husband and my] sex life.” | P2 | |
| “I was on the Depo [since] before my kidney disease, and the reason I was on Depo was because I was getting periods every week for a year… I’m on birth control, but it’s to control my periods, not for the birth control aspect.” | P3 | ||
| “I was already taking medication every day when I started the pill, so taking a pill every day was not a big deal to me.” | P4 | ||
| Reasons not to use other forms of contraception | “I don’t use any other [contraception] because it scares me. There’s... a shot... with hormones... I’ve been stabbed by needles way too much, so no needles for me... I think [the] IUD is very scary; it doesn’t appeal to me.” | P5 | |
| “...with the pill... even if you're perfect about it, you still kind of worry that one day you miss [it], or something like that, right? So, there's always kind of a... low level background concern that there might be an unplanned pregnancy.” | P2 | ||
| Experience with healthcare professionals | |||
| Feeling frustrated | “I find with younger women... doctors, mostly, they tend to just be like,”oh, you know what women go through, it’s normal”, and like, this isn’t normal. So, there’s a lot of... stigma about… periods and we all have them.” | P3 | |
| “…the transplant nephrologists specifically... they don’t know much of how the female body and your periods and the transplant medications and everything with kidneys work.” | P1 | ||
| “I’m quite lucky the kidney team [is] amazing… but… it’s not [an] integrated team, so they deal with kidney[s], they don't deal with period[s].” | P6 | ||
| Nephrologists’ knowledge about female reproductive health issues | “...only discussion I've had with my nephrologist in terms of like birth control was him wanting to make sure I was on it and not trying to get pregnant... with the drugs that I’m taking, especially with this [cyclophosphamide].” | P2 | |
| “...maybe the doctor should invite you... just ask, “do you have any questions about your period? Is everything all normal? Do you have pains?”” | P5 | ||
| “…now that I have a better team like [nephrologist’s name] and stuff, she does ask [period-related] questions which is a breath of fresh air but that’s only one doctor out of the whole department.” | P3 | ||
| Expectations of health care professionals | “…getting educated by those professionals, the gynecologist professionals, and working as a team is really important, because that teamwork sometimes isn’t there and that communication isn’t always there because again, [different health care professionals] come from different worlds and they focus on different aspects of the patient’s body. But coming together to work as a team, again in any aspect, is really, really important, and it makes the patient feel that they’re being heard, that their concerns are valid.” | P1 | |
| “…cisgender women’s endocrine system...impacts all like our health and, all in all, a ton of ways that we don’t really understand... so it’s probably really important for all health professionals to talk about it.” | P4 | ||