Four categories were derived from the data: physical reactions, psychological reactions, intensity of adverse reactions, and consequences of adverse reactions. Figure 1 presents an overview of the categories and sub-categories. Nine posters described positive dechallenge, meaning that the adverse reactions ceased when the Cu-IUD was removed. Two posters described positive rechallenge, meaning that the adverse reactions recurred when a new Cu-IUD was inserted after a positive dechallenge.
Category 1: Physical adverse reactions
The sub-categories in physical reactions included blood system, cardiovascular system, device-related reactions, ears, eyes, excretory system, gastrointestinal and metabolic system, general reactions, integumentary system, menstrual cycle and uterine bleeding, muscoskeletal and connective tissue, nervous system, reproductive tract infections and inflammations, uterus, vulvovagina, and sexual health (Fig. 1 and Additional File 1). The most common adverse reactions mentioned by the posters were menorrhagia (n = 68 posters), dysmenorrhea (n = 17 posters), and metrorrhagia (n = 18 posters), please see Additional File 1 for more information.
Category 2: Psychological adverse reactions
The sub-categories in psychological reactions included anxiety, cognitive impairment, general psychological health, negative alterations in cognitions and mood, and self-injurious behaviors (Fig. 1 and Additional File 1).
Category 3: Intensity of adverse reactions
Negative expressions illustrating intensity (sub-category 1): 34 codes of expressions illustrating intensity were identified (Table 2). The expressions portray a significant intensity of the adverse reactions, such as the reaction being “awful”, “extreme”, “indescribable”, and “traumatic”. Several described the intensity of increased menstruations as an adverse reaction, including the amount of blood feeling like “a flood”, “a river”, “a downpour”, and “gigantic”. Posters also described bleeding “like a pig” and “like crazy”. Some took tranexamic acid or naturopathic drugs to counteract the increased menstruation. Posters described that they needed to change their tampons very often and that heavy menstruation had such intensity that it had a considerable impact on their daily life. Additional File 2 presents an expanded overview of the identified expressions.
Table 2
Expressions and quotes in the sub-category intensity of the identified adverse reactions.
Expression | Illustrative quote (respondent number) |
Awful | I’ve never experienced anything more awful. (82) |
Came crashing down | All reactions came crashing down over me (19) |
Can’t live like this | I can’t stand waiting if this will pass, I can’t live like this. (39) |
Can’t move or stand straight | So much pain that I can hardly move or stand straight (74) |
Can’t stand it | I have anxiety during ovulation and anxiety before menstruation. I can’t stand it. (109) |
Don’t know what to do | I don’t know what to do, the tests are negative and the IUD is correctly in place (81) |
Enormous | I had enormous pain during and right before menstruation (9) |
Extreme | I feel really strange, I am dizzy, extremely fatigued (98) |
Feel really ill | Felt really ill for several years because of it (82) |
Feels like dying | You think that you are about to go insane or about to die! (1) |
Hell | I didn’t understand what it was until almost a year and it had been a year of hell (14) |
Horrible | The Cu-IUD was horrible for me! (82) |
How much do I need to withstand | How much do you have to withstand (as a woman)? (80) |
Immense | I bled immensely (9) |
Indescribable | I was prepared that it would hurt but the pain was completely indescribable (77) |
Insane | It’s insane that you bleed so much (70) |
It only got worse | It only got worse for me. (132) |
In fetal position, cringing and turning in pain | I’m laying on the couch and turning in pain (80) |
Like the plague | The period is really like the plague, long and profuse (95) |
Lost hope | I’m loosing hope in myself and become so scared when the panic comes (27) |
Misery | It is alright all days except two, when it’s misery with the Cu-IUD. (84) |
Never felt this ill before | Never felt this ill before! (60) |
Not for me | The Cu-IUD was absolutely not for me! (76) |
Not fun at all | Then I got this infection, which was not fun at all. (54) |
Nothing positive | I can’t say a single positive thing about the copper IUD. (82) |
Sick and tired | I have the Cu-IUD and I am so bloody sick and tired of it (16) |
Suffering | I suffered for two years because of my copper IUD. (68) |
Tough | The bleeding was really tough (11) |
Traumatic | It was such a traumatic experience for me to have the IUD inserted (32) |
Uncomfortable | Sometimes I feel a pinch somewhere in the genital area. It feels so uncomfortable (46) |
Without equal | The worry was without equal... (1) |
Worse than giving birth | I have given birth before but I can say that it was worse to have it inserted (54) |
Worst experience | This is the worst thing I have experienced (1) |
Wouldn’t wish it on my worst enemy | I wouldn’t wish it on my worst enemy... (1) |
Temporal aspects (sub-category 2): adverse reactions were described as constant (described for anemia, dysgeusia, dysmennorhea, metrorrhagia, nausea, unspecific pain, and vertigo), accelerating over time (described for abdominal distention, alopecia, altered mood, chest pain, depression and depressive mood, excessive worries and fears, fatigue, general anxiety, mental fatigue, nervousness, palpitations, panic reactions, paresthesia, and vertigo), having a fast onset (described for altered mood, depression and depressive mood, and premenstrual syndrome), and recurrent (described for menorrhagia and metrorrhagia). One poster had reactions that prolonged over several years, and another described having sought care several times to get help with the reactions.
Retrospective thoughts (sub-category 3): eleven posters wrote that they would never again consider a Cu-IUD and one poster wrote that she would never had have the Cu-IUD inserted if she had known beforehand about the adverse reactions she experienced.
Category 4: Consequences of adverse reactions
Deciding to keep the Cu-IUD despite adverse reactions (sub-category 1): some decided to accept adverse reactions related to changes in menstrual bleeding. Reasons why these decided to accept the reactions and keep their Cu-IUD were that they regarded that the benefits associated with the contraception outweighed the adverse reactions, preferred using a contraceptive method without hormonal components, and considered the Cu-IUD as the more environmentally friendly alternative in comparison with hormonal contraception. Posters expressed that it was negative that there are so few methods for effective contraception that do not involve hormonal treatment, other than the Cu-IUD.
“I’ve had a copper IUD before, and had spotting before menstruation. But I still feel that the advantages clearly overweigh the disadvantages. It’s nice that it’s without hormones, both for the environment and myself. But I’m so tired of the fact that there isn’t any contraception that is just great.” (Poster 15)
Removing the Cu-IUD due to adverse reactions (sub-category 2): 31 posters articulated that they did not accept the adverse reactions and decided to remove the Cu-IUD. Adverse reactions that led to removal included menorrhagia, metrorrhagia, depression and depressive mood, dysmenorrhea, ovulation pain, fatigue, arthralgia, inability to lose weight, altered mood, headaches, unspecified uterine infection, anemia, vaginal discharge, ocular hyperemia, ocular pruritus, pruritus, nausea, paresthesia, eczema, and somnolence.
“I bled most days of the year when I had the copper IUD. Finally, I couldn’t bear it anymore and decided to take it out.” (Poster 10)
Consequences on sexual health and relationships (sub-category 3): posters described that the experienced adverse reactions had negative effects on their sexual health, because of menorrhagia, vulvovaginal pain, vaginal discharge, and the partner feeling the cords of the Cu-IUD. These consequences were described to have negative effects on their quality of life. When psychological reactions were experienced, it had negative consequences on the poster’s relationships with their partners. Some described that they feared that their relationships would end because of the adverse reactions. Some described that their partner was negatively affected by the alterations in mood and psychological health they experienced.
“I’ve had terrible premenstrual syndrome during these years that keeps getting worse. I cry, scream and have anxiety. I drive my partner crazy.” (Poster 25)
Fears and worries because of adverse reactions and a traumatic insertion (sub-category 4): some described fears and worries related to the adverse reactions, particularly when they did not recognize the manifestations or could explain them. Posters who had experienced a painful and traumatic insertion expressed considerable fears of seeking care at a gynecologist or midwife. This consequence resulted in deciding not to remove the Cu-IUD, despite wanting to. Some required repeated visits to the midwife before they felt prepared and ready to remove the device.
“I tried to have it removed for several months but could not go through with it because of the pain I experienced when it was inserted. It was the most painful situation I have ever experienced” (Poster 32)