SCI Care: What Really Matters
SCI Care: What Really Matters
How Women Can Support Their Bladder and Bowel Health from Youth to Later Years
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This webinar, in partnership with Wellspect, aims to raise awareness of these issues. Originally recorded as a webinar, we decided to release it as a podcast as well. We hope you enjoy listening.
This episode will cover bladder and bowel management during the different stages of a woman's life, overcoming barriers to break the taboo in discussing such issues, the challenges and risks of becoming a mother with a spinal cord injury and the importance of a good bladder and bowel routine will have on your self-confidence all leading to empowerment and a better quality of life.
To do this, host Ami Kivi, Global Product Manager Urology, Wellspect invites Dr Maria Gyhagen, Associate Professor in Obstetrics and Gynecology at Sahlgrenska University at Gothenburg University and Inge Eriks-Hoogland, head of the outpatient department of the Swiss Paraplegic Centre, to shed light on this pressing women's health issue. Their groundbreaking research and advocacy work reveal the widespread impact of these disorders and pioneer new paths in care and empowerment for affected individuals.
The prevalence of pelvic floor disorders, such as incontinence and genital prolapse, severely impacts quality of life. Dr Gyhagen's research focuses on the functional dynamics of the pelvic floor, especially post-childbirth, emphasising its multifaceted effects, including compromised self-esteem and sexual dysfunction. She stresses the importance of early diagnosis and targeted support, which are often overlooked in healthcare.
Obstetric Anal Sphincter Injury Calculator https://www.sphinctercalc.com/
UR-CHOICE Pelvic Floor Disorders Risk Calculator: https://riskcalc.org/UR_CHOICE/
Dr Eriks-Hoogland's expertise in spinal cord injuries highlights the unique challenges faced by spinal cord-injured women during pregnancy and childbirth. The podcast highlights heightened risks and the necessity for informed choices and collaborative clinical approaches, ensuring active participation in health decisions. Standardised guidelines in gynaecological care play a vital role in empowering patients and improving care protocols, advocating for a more predictive healthcare approach and addressing societal taboos surrounding pelvic floor disorders through greater awareness and dialogue.
SCI Care Guidelines https://register.awmf.org/de/leitlinien/detail/179-014
We hope you will enjoy this episode.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
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Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Hi everyone and a warm welcome to this episode in a series of webinars in co-laboration between ISCOS and WellSpect . My name is Ami Kivi and I work at WellSpect as the Global Product Manager for the female portfolio , for the female portfolio . Today , we'll discuss the challenges that many women face throughout their life with bladder and bowel , with their bladder and bowel , and we will also deep dive into the consequential effects of our spinal cord injured women . I'm joined today by two very inspiring doctors with quite different specialities , but I think you will learn from our discussions today that there are many aspects that unites their research . I'm glad to introduce Maria J Hagen . You are associate professor at obstetrics and gynecology at Sahlgrenska Academy in Sweden , and we also have Inge Erikshogland . You work as a physician at the Swiss Paraplagic Center and you also teach at the University of Zürich . A very warm welcome to both of you . So let's get started . I think , maria , why don't you start by just introducing your work and your research shortly for us ?
Speaker 2Hi everyone and thank you for inviting me for this lesson . I work as a general gynecologist , especially urogynecology , since many years and I also do a lot of research , mainly on pelvic floor function for women during their lifetime , and I've been especially interested in obstetric events and late complications from pelvic floor . I've especially been interested in different modes of delivery and consequences and also done mapping on pelvic floor dysfunction in women that haven't had children and women , different ages and risk factor .
Speaker 1And what about you , inge ? Would you like to share a few background images ?
Speaker 3Yes , of course , and thank you for organizing this webinar . I'm looking forward to it . I'm looking forward to it . I'm a medical doctor physical medicine and rehabilitation since 20 years , and also since 20 years in the field of spinal cord injury Now currently working at the Swiss Paraplegic Center as head of the outpatient department department , and part of my work is also the guideline development of follow-up care , but also pregnancy in women with spinal cord injury and , of course , bladder and bowel management .
Speaker 1Yes , and we'll be hearing more about that later , but I think we'll just get on with it . And , maria , I know you've worked many years as a gynecologist and , as you mentioned , you have done extensive research around pelvic
How common are pelvic floor problems with women in general? And which women are at greater risk?
Speaker 1floor disorder with women . How common would you say that these problems are with women in general , and which women would you say are at greater risk ?
Speaker 2Well , women are especially prone to have pelvic floor disorders because of the anatomical differences . For example , in comparison with men , we do have the possibility to stand , walk and also have children , and that's the reason why we have a much weaker pelvic floor than men have . That means that we are prone to dysfunction when we have trauma to the pelvic floor . And the women who do not have had a trauma women without childbirth they do have also a lot of pelvic floor weaknesses . So in general , I think about 20 to 40 , 45% of all women have some kind of problem with incontinence , genital prolapse symptoms or bowel incontinence . So it's very common and millions of women have problems . We know just about those who seek help for their problems , but there's just the top of . So women are prone to with age and if they
What would you say are the main consequences of incontinence for women?
Speaker 2add weight which we do all women during lifetime , we have a tendency to have pelvic floor dysfunction .
Speaker 1Yes , that's a lot more than I think . Most doctors know that this is a very common disorder and I was also thinking what would you say are the main consequences of incontinence for women ?
Speaker 2We do know a lot about this due to qualitative studies , that there is a profound influence on the well-being and quality of life . Because of quality of life , because of accidental urinary and bowel incontinence , it's very common , with feelings of shame and a lowered self-esteem Also . Especially bowel incontinence leads to social limitations
The gender difference is that women can have problems with their bladder and bowel at many stages in their life, whereas statistically, men are over 70 before they have problems.
Speaker 2and isolation , some also sexual dysfunction , some also sexual dysfunction and we think that it affects women in their workplace when they do sports and also have economic difficulties due to their pelvic floor dysfunction and I know you mentioned it previously also that that women tends to have these disorders earlier than men , right ?
Speaker 1So they have it while they're in their working life , and that's difference from women .
Speaker 2Yeah , most men have the problems after the age of 70 , while women already in the 25-30 years , especially after
Variable on the Prognostic Model.
Speaker 2childbirth , can have their debut of incontinence . And we know from several studies that women almost have had their difficulties five to ten years before they tend to seek health care .
Speaker 1That's a long time yeah and . I was thinking also about the variables you were talking about . Would you like to share a little bit about the model that you've been working on and the variables that you've been using in this model ?
Speaker 2You mean the prognostic models . Yes , we have worked a lot of prognostic models models , especially for pregnant women , to try to make individual risk assessment . Most of pelvic floor disorders do debut in later midlife . So we have made studies for the risk of having incontinence and genital prolapse symptoms 12 to 20 years after they have their births . And what we saw in that study was that of course , weight for the woman , heredity factors such as having a primary relative , is a risk factor , but also if they have had urinary incontinence or prolapse symptoms during the pregnancy , that is a real strong risk factor for later incontinence but also worse incontinence than before . We saw also that , of course , big baby , to deliver a big baby baby , especially if the mother is short , that's a risk factor and there are several other risk factors that we built in the model very interesting .
Speaker 1Inge , would you like to tell us a little bit about the patients that you meet at the paraplegic center and if you believe that the model that Maria is talking about also could be , you know , applied on them , if this is an opportunity for these women as well ?
Speaker 3Yes , of course At the center we see men and women with spinal cord injury and of course bladder and bowel problems due to spinal cord injury are already a problem and of course it depends on the level and the completeness of the injury how bladder and bowel management is influenced . But I could very much imagine that extra factors like giving birth could add to this . So that's very interesting . But in women with spinal cord injury there is , to my knowledge , no research in this .
Speaker 2I've seen some studies that mainly focus on lacerations during the delivery and I couldn't find any differences actually between spinal cord injured and not spinal cord injured , and mostly focusing on urinary infection during childbirth .
Speaker 3Yes , which is of course also a problem .
Speaker 2But we know , for example , that
Risks in pregnancies with spinal cord injured women and the risks.
Speaker 2nowadays we know from three big studies from Australia , from US and from Europe , actually that almost every fifth woman have to do surgery for incontinence , or women have to do surgery for incontinence or genital prolapse before they're age of 80 , 85 .
Speaker 1So it's so common and a real health burden for society , not only for the woman affected . That's incredibly high numbers and , inge , I was thinking . You mentioned to me on another call that women with spinal cord injuries tend to have less pregnancies , and I know that you also say that there is a higher risk for these women to have vaginal delivery . Would you like to just tell us a bit about that ?
Speaker 3Yeah , actually we also here . We know quite little about the differences between sexuals and vaginal births , but we know that women especially and I know the numbers from Switzerland that women with spinal cord injury tend to have less children than non-injured women with spinal cord injury tend to have less children than non-injured women with spinal cord injury . And then , of course , the question is why ? What is perhaps they are afraid ? Of course you have to have a partner , or at least the possibility to get pregnant , but there are , of course , many factors that may lead to less pregnancies in women with spinal cord injury .
Speaker 3And when you mention the risk as a pregnant woman with spinal cord injury , of course we have some concerns . It's like the increased incidence , we know , during pregnancy , of urinary tract infections , increased risk of pressure sores , increased risk of bowel problems . So the whole management around the pregnancy should be very well organized . Management around the pregnancy should be very well organized . That , of course , is not a reason to say women with spinal cord injury shouldn't get pregnant , but there are some things I think you should discuss , or at least speak about how to handle these problems once they appear yes , I'm sure that very many spinal cord injury women would like children , of course , as well , but maybe they're afraid of it and put extra burden on their .
Speaker 1maybe you know the handicap they already have .
Speaker 3Yes , especially in women with tetraplegia . Of course , it's not just the birth , but also taking care of the children after , afterwards . It's like discussing the medication , breastfeeding . What do you do once you have a urinary tract infection ? How is birth organized , et cetera , et cetera , etc .
Speaker 2So it's not per se that pregnancy is a medical problem , but at least you should consider , speak about and discuss what you should do , or what a woman should do , once these problems appear Something we notice in the obstetrics nowadays that also women with chronic diseases and injuries like this we are talking about today want children and we have to follow what we know about risks and there are no obvious increased risk with these women , although I think 50% of all those , the women with the spinal cord injuries , are having a c-section , but I'm not sure that that is on medical , for medical reasons . Maybe there are other reasons behind that yeah , there are some .
Speaker 3Sometimes it's practical reasons yeah women living in rural areas , for example here , tend to have more chance of a sexual or a plant sexual than women who live nearby the hospital . And of course it depends also on the level and the completeness of the injury . In women with tetraplegia , where we know that autonomic dysregulation is a problem , of course it's very different than a woman with paraplegia without any problems like this . So that depends , but not only for medical reason . I think in general some women prefer a sexio and some women don't .
Speaker 2Yeah , and today a caesarean section is a very safe surgery with modern antibiotics and techniques . I would say it's a very safe surgery with modern antibiotics and techniques . I would say it's a very safe surgery .
Speaker 1Yes , and even knowing this , I know that many spinal cord injured women still like to have a vaginal delivery , even though the risks are higher . Isn't that so ?
Speaker 3on the level and the completeness of the injury and perhaps also the anatomical changes after a traumatic spinal cord injury . And I think it's our duty as medical doctors to inform our patients on the possible risks . And I know of course women with spinal cord injury don't want to be treated differently than women in the general population and I'm the last to want to put an etiquette on this patient population as a problem as a problem . But I think it's wise to discuss and speak about risks because that also gives us a possibility to better manage and handle problems once they appear and hopefully they don't appear , but sometimes they do and then we should be prepared and especially the women with spinal cord injury should be prepared and know what they should do once they appear .
Speaker 1Yeah , being prepared is the key word , isn't it , Maria ? Do you have anything that you'd like to add to this ? Do you have any sort of experience that is similar ?
Speaker 2that similar . Yeah , I totally agree with inge that , especially women with chronic diseases and pregnancy , very many of them want to be treated as normal as possible because they are their diagnosis . Most pregnant women , they are healthy and have never been in contact with health care before . But women with chronic diseases or injuries , they have had too much contact with health care and they really long for being just treated as normally as possible . And we know that from studies in women with HIV that nowadays don't need to have a cesarean section to have a safe birth . They can have a normal vagina delivery . So that's one of the studies I think of .
Speaker 2But it's very important to listen to women's values and goals regarding the mode of delivery , to to improve their satisfaction so they can do a shared decision with their doctors about their delivery . But I will also say that information about pelvic floor . It is inherently weaker in normal , without chronic diseases or injuries . So what we , what my special interest is the pelvic floor disorders . That is very common after a vagina birth and we know a lot of the long term consequences of these injuries due to the birth . And we have to take both perspectives into account what women with already dysfunction pelvic floor , what it means to them , and we have absolutely no scientific evidence on what will happen to these women .
Speaker 2Is it more common , with more difficulties , after a vagina birth , or are they unaffected by a vagina birth ? So we need to have more studies on that and for some women , pelvic floor function may be the most important thing to discuss with our doctors and today we can't say what will happen if they have a trauma , especially the first birth is a trauma and we know , for example here in Scandinavia and sphincter anus , sphincter rupture in a woman with already an altered function . That happens in 5 to 10 percent and we don't know what will happen to the patients in the long term that about 25% of women with a sphincter rupture in birth will have problems with fecal incontinence 20 years later . So that is something you can have in your basis for information .
Speaker 1When making decisions and recommendations .
Speaker 2Yeah .
Speaker 1I agree , it looks like you have more research to do , hearing from you .
Speaker 2Yes , but balanced information to the patient and really know what's important for her , and I think it's important that she makes the decision .
Speaker 1Yeah , yeah , you're right . Well , I mean discussing this . I mean , half of the world's population are women and , as you said , maria , a very high proportion less 25 percent have some sort of pelvic floor disorders later on in life , and and especially bowel problems tends to be very exhausting and very shameful for all these women , but we tend not to hear in much about it , you know , neither in the press or your social media . There there's not much talk about this . Why isn't it ?
Speaker 2yes , it's very hard to tell , but I know from other studies done that a lot of women think that this is part of a normal aging , that you have incontinence , urinary incontinence or bowel incontinence , and genital prolapse symptoms .
Speaker 2But for some women , especially in africa , they can't even talk to their husbands or partners about it because that will may lead to that the husband leaves them actually , and there are a lot of shameful factors about this . I'll say urinary incontinence is something that we hear a lot about nowadays , but the most difficult part is a bowel incontinence and that is that is a sad story actually , because we have so little to surgical treatment to offer these women so we can just treat them conservatively with medic medications , and that is probably due to a traumatic birth earlier in life . But I think the more we talk about them , the younger generation they do talk about these things , but it's nothing you talk about with your relatives when you have a dinner party , or so you it's really it's hard yes , it is , but I think you should at least talk with your friends , your female friends among women , and and your doctor , of course .
Speaker 1I mean , as you said , fecal incontinence is such a burden for these women , so it should be really on the top of the agenda .
Speaker 2Absolutely . We know that just the problem with social isolation is especially for women with bowel incontinence . Because of smelling they are constantly feared of having accidents .
Speaker 3Do you have anything to comment on this , inge ? Yeah , of course , in spinal cord injury , bladder and bowel management is part of bladder and bowel management is part of every appointment at the medical doctor . That's a huge problem . It's very hard to handle , especially if you compare it with men with spinal cord injury
SCI Care Guidelines
Speaker 3. There are much better solutions for bladder incontinence , and in women that's more difficult , and fecal incontinence , like you said , maria , is , of course , still a topic with a lot of shame , and that's a pity because it doesn't have to be an operation . It doesn't have to be an operation . There are a lot of conservative medical medications that might help . So it's really important to discuss this , and what I already learned from talking with you , maria , is that we address this topic , I think , too little in our women with spinal cord injury after childbirth . I think that we can do better and actively address this topic . We don't have any numbers or evidence in how this is in women with spinal cord injury , so it's certainly important .
Speaker 2I would really be interested in what an anal sphincter rupture would do to a spinal cord injured woman .
Speaker 3Yeah , that's of course interesting . If there is in some patients with spasticity , and especially spasticity of the anal sphincter , that would be of course very different . If there's a rupture of the anal sphincter in this population , compared to , for example , women with lumbal and sacral spinal cord injuries , like our women with spina bifida , that's of course completely different . But to be honest , we don't have any evidence , no research on this as far as I know .
Speaker 1Yeah , but still though , inge , you have developed guidelines for follow-up care for STI patients , which I think is really interesting , and I hope everyone in this call has read that . Work with spinal cord injury patients , and there you also have a chapter on bladder and bowel right , and not particularly , perhaps , for women that have given childbirth , but you do bring this topic up with each patient during the consultation at the center right , yes , there are several guidelines .
Speaker 3We have the guideline for the follow-up care after spinal cord injury . That is very structured and bowel and bladder management is of course a topic in this , but also gynecological care
What advice can be given to women with incontinence?
Speaker 3and having this guideline makes it easier for also for the junior doctors but also for the women with spinal cord injury to talk about it , women with spinal cord injury to talk about it , and also the guideline , but also the guideline for pregnancy and bladder and bowel management . There are also , of course , political and strategical tools to set a standard and to show also our patients that this part at least in our patient population of men and women with spinal cord injury . So that's a step to acknowledge that it is a problem , to acknowledge that we actively have to speak about it , but also to health insurances etc . That further treatment of this problem is part of the treatment of women with spinal cord injury , treatment of women with spinal cord injury . So guidelines are , in my opinion , an important tool in several layers .
Speaker 1I agree , and this is a very fragile group of people we are talking about as well . In many senses they are . They have many problems . So I think I've read the guidelines and I think it's a great tool for doctors to use in their everyday work .
Speaker 3Yeah , it also motivates us really to speak about it and it gives a structure and it gives also assessments to make it more objective to really address the problem and scale it with , for example , a Bristol stool scale . That helps . It also helps . The guidelines are also available for women with spinal cord injury . They can read them themselves or bring them to the appointment with a gynecologist or the urologist . So it helps as a tool and a quality standard .
Speaker 1It's good that the patients have them as well I think not just the doctors so they can also learn and know their possibilities . Maria , what can you share your top advice and how to decrease the number of women with with incontinence problems for the future ? And I also would like to address the people , the women that have incontinence problems today and what can they do to feel better and have a better everyday life ?
Speaker 2To start with the prophylactic advices . I think there's not much you can do . You have your genetics , your hereditary factors , but , of course , avoiding being overweight . It's especially bad for urinary and bowel incontinence . There's a lot of talking about prophylactic pelvic floor exercises , but that has have actually not been shown being effective , and that's quite . I can understand that , because to motivate healthy people to do exercises to avoid incontinence is hard , but in spite that we don't have much science on pelvic floor exercises . It's always better to have more muscles than less muscles and of course , the older you get , the less muscle you have . So I think training exercises , pelvic floor exercises , are actually good .
Speaker 2And then of course , we have maybe to work more with prediction modeling , for example .
Speaker 2Now we are having a prediction modeling of women risk , individualized risk for having a sphincter rupture . The baby's size before a vagina birth is very important to know to avoid anal sphincter rupture , and I think that is extremely important for those who already got bowel problems and then prefer to do a cesarean section instead of try to do a vagina delivery I think that would be and , of course , to avoid forceps delivery . That is one of the most dangerous things for the pelvic floor , so that there are some obstetrics things that you really should avoid and for the women who's already affected , I think it's important to seek help and maybe I know a lot of women . They try to talk to their general practitioners
Final Discussion
Speaker 2and they don't listen to them actually or just don't want that . Don't refer them , but to see a urogynecologist or a gynecologist and discuss what possibilities there are for urinary incontinence . We have a lot of good surgical or medical treatments today and also genital prolapse and , as you're saying , we have a lot of conservative treatments for bowel incontinence and we do have things to help out .
Speaker 3I think , maria , that is really interesting . I think , especially in people with spinal cord injury , of course , taking care of your bladder and bowel is of utmost importance and unfortunately , in the case of spinal cord injury , that's a daily task . So that's really an issue in which women should take care lifelong . But if I see the results of our an bowel outpatient appointment with nurses , with a dietician and with a medical doctor , and then still in about 80% of the people that were seen in this appointment it was the basics drinking enough , regulating your stool , eating enough fibers , staying active , etc . Etc . So I think in in the conservative management there is still also a little bit of room for optimization yes , yes , I think we actually could learn a lot of what you are doing .
Speaker 2I think maybe you discuss this more on a daily basis than we do actually .
Speaker 3Yeah , we thought when we developed this special appointment we thought that the solutions would be very complex and that we would discuss , for example , malone Stoma , etc . Etc . But in the majority of the patients we saw that beginning at the basics eating the right things , drinking enough , having your fibers regulate your bowel management which of course is for for every person , depending on their level , the completeness , their lifestyle but forgetting the basics is not a good idea .
Speaker 1the solution is often in the basics yeah yep , basics are good teamwork and awareness . Yeah , yes , it is . Um . Well , we're actually kind of approaching the end of this webinar and I think I'll just try to summarize some of the discussions that we have today .
Speaker 1And I think you know it's unfortunately , it's still very little progress made in the prevention of pelvic floor disorder for women , even though we know that these disorder cause significant and economical impact on the society and , of course , suffering for so many women that deals with these challenges every day , and especially bowel problems , I would say .
Speaker 1And so there's still so much that we can do for our women .
Speaker 1On the other hand , there are preventative models that could be used before childbirth to identify women who are at risk , and Maria talked a bit about that , and we would like to make sure that we would share the links to these models after this call to make sure that those of you listening can you know , interact and get to know a little bit about the preventive measures that that's available , and you will find them in our show notes afterwards .
Speaker 1But I think perhaps the most , the single , most important conclusion of today is that it is the duty of the doctor and the nurse , not the patient , to ask questions around incontinence for women to bring this area and topic to the floor , because these issues need to be addressed and treated and I think , since there are so many women out there that are too embarrassed to talk about this , I think it's up to the healthcare professional to take this upon their responsibilities and give them the help they need to have and bring that , as Inge said , into a structured conversation during the appointment . I think that is really a key in spreading the word . Is there anything you would like to add to that , maria or Inge ?
Speaker 3No , I agree and I hope that , if we have this webinar in five years , that speaking about bladder and bowel incontinence is just as normal as speaking about other health issues .
Speaker 2I hope you're right .
Speaker 1Yes , well , we're at least doing a try here with this webinar .
Speaker 3Absolutely yeah thank you so much . One of the topics , Amy , at the ASCOs meeting is female care .
Speaker 1Really .
Speaker 3And bubble management .
Speaker 1I love that . I think I have to come Me too . You should come as well , maria . Yes , yes , and you know , for all you guys listening , I hope you enjoyed this webinar . You can watch the previous episodes on the ISCOs YouTube channel . I think they also have it on their ISCO's website , so there you can find more content to listen to . If you have any suggestions or questions afterwards , we would love to hear from you , and you will find the email address to ISCO in the show notes afterwards . So please reach out to us if there is anything you like to ask . We'll make sure to answer those questions .
Speaker 1Isko's also like to take the opportunity to invite you all to their scientific annual meeting in Antwerpen in Belgium , in October . I don't know where you'll be coming in , inge . You think I'm certainly there . Let's hope so . I think it'll be a very interesting topic there that is being brought up . So please read more about that meeting on ISCO's webpage . There you'll find where you also can sign up . Finally , a really , really big thank you to Maria and Inge for sharing all this valuable research experience and knowledge with all of us listening here . It's been so interesting and rewarding and you know , I hope we will meet soon again , as Inge said , and hopefully in a few years this will be higher up on the agenda in in most you know forums and for the rest of you out there listening , I'd just like to thank you for listening today and looking forward in meeting you in another day . Thank you and have a good day .