The risk of childlessness and serious relationship problems in men with a deceptively harmless disorder of the penis
It is easy to relate to the challenges of having a genital disorder, regardless if it is considered as medically “harmless”. In this proposal, we aim to assess the risk of childlessness, and ended cohabitation, and divorce in men with Peyronie’s disease (PD). PD is a disorder of the penis that causes for example a bent and painful erection. Prior studies have shown that many men with PD suffer from diminished quality of life, poor self-esteem, and self-stigmatization, which may lead to avoidance of dating and intimate relationships and thereby increase their risk of childlessness.
Men with PD who are in a relationship often experience problems with negative effects on their relationship functioning, as well as feelings of rejection and hurt from their partners as a response to their problems with intimacy and sex.These factors may increase the risk of ended cohabitation, and divorce in men with PD.
We argue that PD is a deceptively harmless disorder with potentially life-altering consequences. Population-based register research is a novel approach to address the aims of this project. If the results would show excess risks of childlessness, and ended cohabitation/divorce, it would increase the awareness of PD in health care, and suggest the need of a cross-professional care that includes assessment and treatment of non-medical problems regarding family planning and relationships, thus potentially improving important aspects of the life chances of men with PD.
Men with PD who are in a relationship often experience problems with negative effects on their relationship functioning, as well as feelings of rejection and hurt from their partners as a response to their problems with intimacy and sex.These factors may increase the risk of ended cohabitation, and divorce in men with PD.
We argue that PD is a deceptively harmless disorder with potentially life-altering consequences. Population-based register research is a novel approach to address the aims of this project. If the results would show excess risks of childlessness, and ended cohabitation/divorce, it would increase the awareness of PD in health care, and suggest the need of a cross-professional care that includes assessment and treatment of non-medical problems regarding family planning and relationships, thus potentially improving important aspects of the life chances of men with PD.
Final report
Peyronie's disease means the development of scar tissue of the penis that causes a bent, shortened or atypically shaped erection, which may also be painful. The disorder is often chronic, and the typical onset of the disorder occurs in the middle age, but younger men may also be affected. The prevalence is uncertain, but most studies suggest that between 3% and 9% of adult men may be affected. There is, however, a hidden group of men with Peyronies disease who avoid contacts with health care due to embarrassment and self-stigmatization. Previous research shows that a majority of men with Peyronie’s disease suffer from mental health problems, and problems pertaining to sex, intimacy, and intimate relationship are very common. Peyronies disease is therefore a disorder with negative effects on partners of the affected men. It is easy to imagine and relate to how these types of problems could lead to an increased risk of childlessness and relationship separation in men with this condition.
In this project, we used information from Swedish national registers to assess if a group of more than 8.000 men with Peyronies disease have an increased risk of childlessness or relationship separation, or an excess rate of relationship separation (measured year-by-year), as compared with a large group of men without PD ascertained from the general Swedish population and matched on birth year.
In short, the implementation of the project has comprised linkage of a multitude of Swedish national registers, extraction of register data and preparation of data for statistical analyses, statistical analyses describing associations between Peyronies disease, childlessness and relationship separation, write-up of two research papers and revisions according to comments and suggestions from peer-reviewers. The project has in all essence followed the stipulated time plan and no changes of the project plan have been necessary.
The research project resulted in several interesting findings, for example that 1) men diagnosed with Peyronies disease at a younger age (about 35 years) than typical (about 50 years) had a 50% excess risk of childlessness, compared with comparison men without Peyronies disease. Among men diagnosed later in life, only marginal differences were observed. Moreover, we found that 2) men with Peyronies disease had a 13 % excess risk, and 3) a 18% elevated rate of relationship separation.
These findings are the first of its kind, based on one of the largest samples of men with Peyronies disease in the world, and highlights the need for practitioners in primary care, as well as in specialist care, to ask their PD patients about problems related to intimate relationships and reproduction and assess the need for referral to relationship counseling. We further hope that the results will aid the de-stigmatization of genital disorders and reduce the hidden group of men with Peyronies disease who refrain from contacts with health care and suffer in social and psychological isolation.
This project has raised new hypotheses and research questions, and in our opinion underlines the need for qualitative research to understand more about the mechanisms behind the observed associations between Peyronie's disease, childlessness, and relationship separation. Information from discussions in focus groups of men with Peyronie's disease can contribute important insights into how the sufferers themselves experience that mental illness, relationship problems and childlessness are connected and interact. We also believe it is important that potential partners are given the opportunity to participate in such research and contribute their perspectives, as Peyronie's disease regularly affects them in different ways, but available research on the subject is currently lacking.
The dissemination of the project and its results has been a priority. In October the 3rd 2023, all results were presented at the research conference Urologiveckan in Sundsvall, and when the research papers are published, we will post press-releases at the webpages of Örebro University and Karolinska Institutet. Moreover, medical students at Karolinska Institutet have also been informed about the project during the urology course led by the research group's urologist and docent in urology Lars Henningsohn, and we have also lectured to doctors during specialist training for urologists, so-called ST service, in Örebro.
Within the framework of the project, we have also formed the patient association Peyronie's Association (www.peyronieforbundet.se) and we will invite the association's members to an information meeting and to discuss how the affected themselves see the need for future research on Peyronie's disease. A project description will also be published on the Peyronie Association's website. Furthermore, we will print up leaflets with information about the project and its results, and distribute these in waiting rooms at all of the country's urology clinics and men's health clinics. To the extent that the budget allows, we will print leaflets translated into the country's two largest minority languages, in other words Arabic and Finnish. Lars Henningsohn also appears on a regular basis in Aftonbladet in articles relating to diseases of the penis, including Peyronie's disease (see for example https://www.aftonbladet.se/halsa/a/8Qe0zA/peyronies-sjukdom-sa-far-du- sexlivet-att-fungera-igen), and https://www.aftonbladet.se/halsa/a/mrOpLl/erektil-dysfunktion-impotens-sa-loser-du-problemet) and will, when the appropriate opportunity is given again, inform about impending project and the research results it generated.
Peyronie's disease is an under-researched and underestimated disease in healthcare, and in our opinion, a partially hidden public health problem, especially among middle-aged men. This project has contributed to reducing important knowledge gaps about the negative consequences of Peyronie's disease, and further research in collaboration with internationally prominent researchers and experts on Peyronie's disease is under intensive planning.
In this project, we used information from Swedish national registers to assess if a group of more than 8.000 men with Peyronies disease have an increased risk of childlessness or relationship separation, or an excess rate of relationship separation (measured year-by-year), as compared with a large group of men without PD ascertained from the general Swedish population and matched on birth year.
In short, the implementation of the project has comprised linkage of a multitude of Swedish national registers, extraction of register data and preparation of data for statistical analyses, statistical analyses describing associations between Peyronies disease, childlessness and relationship separation, write-up of two research papers and revisions according to comments and suggestions from peer-reviewers. The project has in all essence followed the stipulated time plan and no changes of the project plan have been necessary.
The research project resulted in several interesting findings, for example that 1) men diagnosed with Peyronies disease at a younger age (about 35 years) than typical (about 50 years) had a 50% excess risk of childlessness, compared with comparison men without Peyronies disease. Among men diagnosed later in life, only marginal differences were observed. Moreover, we found that 2) men with Peyronies disease had a 13 % excess risk, and 3) a 18% elevated rate of relationship separation.
These findings are the first of its kind, based on one of the largest samples of men with Peyronies disease in the world, and highlights the need for practitioners in primary care, as well as in specialist care, to ask their PD patients about problems related to intimate relationships and reproduction and assess the need for referral to relationship counseling. We further hope that the results will aid the de-stigmatization of genital disorders and reduce the hidden group of men with Peyronies disease who refrain from contacts with health care and suffer in social and psychological isolation.
This project has raised new hypotheses and research questions, and in our opinion underlines the need for qualitative research to understand more about the mechanisms behind the observed associations between Peyronie's disease, childlessness, and relationship separation. Information from discussions in focus groups of men with Peyronie's disease can contribute important insights into how the sufferers themselves experience that mental illness, relationship problems and childlessness are connected and interact. We also believe it is important that potential partners are given the opportunity to participate in such research and contribute their perspectives, as Peyronie's disease regularly affects them in different ways, but available research on the subject is currently lacking.
The dissemination of the project and its results has been a priority. In October the 3rd 2023, all results were presented at the research conference Urologiveckan in Sundsvall, and when the research papers are published, we will post press-releases at the webpages of Örebro University and Karolinska Institutet. Moreover, medical students at Karolinska Institutet have also been informed about the project during the urology course led by the research group's urologist and docent in urology Lars Henningsohn, and we have also lectured to doctors during specialist training for urologists, so-called ST service, in Örebro.
Within the framework of the project, we have also formed the patient association Peyronie's Association (www.peyronieforbundet.se) and we will invite the association's members to an information meeting and to discuss how the affected themselves see the need for future research on Peyronie's disease. A project description will also be published on the Peyronie Association's website. Furthermore, we will print up leaflets with information about the project and its results, and distribute these in waiting rooms at all of the country's urology clinics and men's health clinics. To the extent that the budget allows, we will print leaflets translated into the country's two largest minority languages, in other words Arabic and Finnish. Lars Henningsohn also appears on a regular basis in Aftonbladet in articles relating to diseases of the penis, including Peyronie's disease (see for example https://www.aftonbladet.se/halsa/a/8Qe0zA/peyronies-sjukdom-sa-far-du- sexlivet-att-fungera-igen), and https://www.aftonbladet.se/halsa/a/mrOpLl/erektil-dysfunktion-impotens-sa-loser-du-problemet) and will, when the appropriate opportunity is given again, inform about impending project and the research results it generated.
Peyronie's disease is an under-researched and underestimated disease in healthcare, and in our opinion, a partially hidden public health problem, especially among middle-aged men. This project has contributed to reducing important knowledge gaps about the negative consequences of Peyronie's disease, and further research in collaboration with internationally prominent researchers and experts on Peyronie's disease is under intensive planning.