Francesca Paola Pollitt
Welcome, everyone to this new podcast of the SCI Care: What really matters that Wellspect and ISCoS are collaborating with. My name is Francesca Paola Pollitt. I am the anthropology Product Manager for Wellspect in Italy. And with Greg Turner, I will be the host for this podcast today that follows on from the webinar ‘What's to consider regarding Exploring Sexual Dysfunction’ in December 2023.
Wellspect is delighted to have this opportunity to join ISCoS, with its ongoing partnership webinars series. In this episode, we will highlight the importance of considering a very crucial component of this area. That is the sexual aspect and activities for the person with the spinal cord injury.
The title of the webinar is ‘What to consider regarding sexual dysfunction injury’. And so a very warm welcome to the podcast to our two guests for today, Dr Marcalee Alexander and Dr Gianluca Sampogna.
Dr Marcalee Alexander is a specialist in physical medicine and rehabilitation. Throughout her career, she has focused her work on quality of life and treatment of sexual dysfunction after spinal cord injury, conducting extensive research. She has written multiple books and videos in this field. Recently her focus is on the impact of climate change on people with disabilities. She founded, and is president of ‘Sustainer our abilities’ that focuses on education regarding climate change, disability and health. She is editor in chief for the Journal of Climate Change and Health. She is also involved in a walk from Canada to Key West, called Green Route, Aiding Healthy Adaptation and Mitigation to bring attention to the need for a healthy environment. Very welcome, Dr. Alexander.
Francesca Paola Pollitt
Dr Gianluca Sampogna is is a urological surgeon working in a spinal unit in Niguarda Hospital in Milan, where he helps people with spinal cord injury to rebuild and achieve an active and satisfactory sexual life, through sexual counselling, sex toys, prescription of medical therapies, and surgery, such as implant of penile prosthesis. Over the years he has built a successful collaboration with Dr Marcalee Alexander. In fact, he translated the Italian version of ‘Sexual Sustainability, a guide for an active sexual life after spinal cord injury’, a widespread pamphlet for patients and their partners. And they brought together a chapter for health professionals entitled ‘The Rehabilitation for treatment of sexual concepts’. So welcome, Dr Gianluca Sampogna.
Our guests are a very dynamic duo, full of enthusiasm and passion for their jobs, with different backgrounds, which complement each other. A woman and a man of different generations and boundaries, a clinician and a surgeon. So let's start our dialogue with our experts who will ask why the perspective on sexual activities in people with spinal cord injury.
The first question for Dr. Alexander, we can talk about sex toys. Which ones to avoid personal harm? For example, if we have a patient with low or reduced sensitivity? What can you say to us, Dr. Alexander?
Dr Alexander
Well, I can say that we really jumped right in here to the fun part of this talk, which it seems it's a little in reverse of how we normally talk about things. First, we talk about the medical and the physical, and now we're just jumping into the fun.
So I think when we talk about the issue of sex toys for people with spinal cord injuries, I think it really brings up the issue of sex toys in general. What is a sex toy? Is it a physical object? Or is it also thinking about other things people can participate in to make their sex lives a little bit fun or different?
So in terms of sex toys, I think the first thing people think about is vibrators. And you know, the first thing I think that comes to people's mind is women with a vibrator or a dildo, and being able to masturbate by using this device. People use vibrators. It's very common that if you go on Amazon, you'll see 40,000 responses for types of vibrators. So after spinal cord injury, that is certainly still an option for women. The caveat is that after spinal cord injury, people have different function. And so many people may not be able to use their hands the way they could. And they may not have access to use a toy in the same way they might have in the past. And this is where our interdisciplinary team comes into play.
In many places, occupational therapists are available that will help a person with a spinal cord injury, or other disability, to be able to hold a vibrator or a dildo, per se. And you know, the issue of vibrators is not just something for women. It's also something men use. And one of the things that I think is very (and we'll talk more about that in terms of fertility, I think later as we get into this podcast) But I think the issue here is that using a vibrator has actually been shown to improve the ability of people with spinal cord injuries to have orgasms. So sex toys can not only be fun, they can also facilitate a more complete sexual response that people have had in the past.
Now, having said that, when you have a spinal cord injury, your body's different. And you've got to realise you're not going to have the same sensation you had before, on the surface. Now internal sensation may not be altered, and a lot of sexual function is really internal sensations, and autonomic sensations. But since you don't have the same sensation on the surface, it's really important to look, and feel, and when I say feel, also feeling how the body's responding. If a person stimulates themselves too hard, there is a risk of having autonomic dysreflexia. There is a risk also not just of autonomic dysreflexia, but a risk of having skin problems.
So as in most aspects of life, I think the issue of sex toys and spinal cord injury is a matter of balance. It's a great thing. When you have a spinal cord injury, I encourage everyone to go out and try to masturbate. You know, that's what kids do when they're learning about sex. They go and they, you know, explore with themselves before they have a partner. So in terms of spinal cord injury, I encourage exploration, it might be exploration with a partner, having the partner help you see what's working, but also obviously exploring things.
There are a number of devices out there now that are Bluetooth controlled. So you can do things like have Siri increase the speed of your vibrator. There are vibrators that are also suction devices for men. So there's so many different toys, right? When we talk about toys, though, of course, it's not just vibrators. There's you know, you have sex dolls now, right? People can have big blowup dolls, and that can be their toy. If they don't have a partner, they can hug the doll. The dolls have vaginas in them. I mean, all of these different toys and options can be used. There's also the issue of like, sensation, right? So there's the option of trying more of the Kama Sutra aspects of sexuality. Feathers, or different liquid substances, smells, all these different aspects can add to a person's sexuality. It's not just gentital, right? It's also the mood and how people feel.
The other thing I want to say about toys though is, it can also be the surface you're having sex on. There are these swings people can use, different pillow formations you can use on your bed, having a water bed. And then, there's what's in your refrigerator? It might be whipped cream. It might be ice cream! There isn't another idea about having a toy is what happens if you lick something off someone's body or spray it on their body
So there's all aspects when we talk about toys. I want us to really turn that word into play. What can you do to make sex more of a playful experience and a fun experience? That's the overview I would give of it. And in terms of the issue of skin and being careful and everything like that. Having a mirror is a good idea. We give people mirrors to check their skin. It's important for them to know what their genitals look like. It's important to check their skin out, their bodies out. And that's also an aspect of being responsible when you use a sex toy or a sex play thing.
Francesca Paola Pollitt
Thank you very much Dr. Alexander. Now talking instead about something that is less fun than exploring and the sex toys. I would like to ask Dr Gianluca Sampogna, something about the bladder and bowel management for a proper sexuality. So if you have in your experience some tips that you can share with our audience today.
Dr Sampogna
Well, achieving an appropriate bladder and bowel management is mandatory before starting having sex. I think that many patients want to start again having an active sexual life after a spinal cord injury, before an appropriate bladder and bowel management, and we should encourage this because different accidents can happen and maybe these accidents may block the patient and they may avoid the exploration of sexuality after spinal cord injury because the patient may have fear about other other episodes. So we usually encourage our patient to achieve an appropriate bladder management in different ways, because spinal cord injury may result in many changes regarding the lower urinary tract.
When we have an underactive bladder, the patient may empty the bladder through a clean intermittent catheterization. So it is essential for the patient to void the bladder before having sex, and in this way, the bladder is empty and the patient may reduce the risk of urinary incontinence episodes. The problem is that in some cases, a full bladder may help the patient to get an appropriate erection. So, we can help the patient by giving them some drugs for example, some medicines and some other suggestions to get an appropriate erection for having sex.
In other cases, the bladder may be overactive. And the appropriate management is based on the use of clean intermittent catheterization associated with drugs. So it is essential for the patient to respect the administration, also when they programme sexual life. Because in this way, the patient can reduce the chooser contractions and avoid the risk of urinary incontinence.
As for the bowel management, the best suggestions are based on the use of macrogol - usually the salt in the water associated with the use of suppositories before the faecal evacuation or just after faecal evacuation. And it is not so essential to void the bowel just before having sex, but it is essential to have an appropriate bowel routine. So we always encourage our patient to respect the administration of macrogol, usually at least 10/12 hours before the planned bowel evacuation. And during bowel evacuation, they can be sure to wipe completely the bowel by using a suppository or similar. In some cases, we suggest our patients use trans anal irrigation to be assured that they have evacuated the last part of the bowel. So these are our very simple suggestions for having an appropriate bladder and bowel management, to start having an active sexual life.
Francesca Paola Pollitt
Thank you very much Dr Sampogna. But if an accident can happen, what can we say to the patient to encourage them to try again? Because sex is fun,as you said Dr Alexander - What experience do you have in this field?
Dr Alexander
It's funny because I actually made a video and now it's been 32 years since we made this video! There was a couple that were sexually active. And the man had a bladder accident during it. And it was when the woman was having oral sex with the man. And so the way they managed it, was very naturally. They had a towel setup, so they knew if it happened there was a towel available, and they actually had a urinal there too. So they were able to use the towel, use the urinal, and continue to move on with their sexual activity.
I've also had people that have told me about their bowel accidents when they've been sexually active. And a woman told the story of a bowel accident she had when she was having sex with a man for the first time. And basically, the way I think people can deal with it, is that with a new partner or with a regular partner, mention it, it is a risk potentially. And if the person knows it's a risk, then it's a lot easier to deal with. But I think having baby wipes or a side on the bed area, and having a towel available is just kind of a way to be safe in terms of this. And if it does happen, it's part of life. We all do it, and we just need to go on.
Francesca Paola Pollitt
Thank you Dr Alexander, it's probably the right point of view, it's part of life. It can happen. Instead, I have another question regarding the sexual life, the sexual activity, in case of very young patients, for example, adolescent or pre adolescent, which have spinal cord injury. So what is your experience in this field, Dr Sampogna?
Dr Sampogna
In our centre, we have a multidisciplinary team. And in this case, we usually involve the psychologist. So the psychologist usually helps us to do the first discussions, the first meetings with these very young patients, and after the first encounters, we are able to address specific issues. We can help these young patients by adopting a specific sex toys. For example, we are mainly male masturbators that we have adopted, thanks to our occupational therapist. We have our physiotherapist that has developed a great expertise in helping our patients to achieve specific sexual positions. So we usually address specific issues after first encounters with the psychologist. We don't want to use medicines in these cases. So we usually deal with medicines and other therapies after a first evaluation. So our aim is to avoid medicines in this space.
Dr Alexander
I think when you're dealing with an adolescent population, it's important to also talk to your patients as if they were a general adolescent. They are out there most people living with spinal cord problems really are not around people just with spinal cord problems, right. They're around able bodied children too. So I think it's really important to be sensitive to their age, you know, use in some ways, the implicit model, give them the opportunity to ask questions, also talk to them about other issues at the time, you know, normal changes in sexual function with time such as the growth of hair such as menses, etc. And also really bring up issues as birth control, because they may be out there experimenting before you realise. And just because they have a spinal cord injury doesn't mean they might not be out there having sex when they're, you know, a young teenager, because we know this happens. And the last thing you want is to have an unwanted pregnancy in a person with a spinal cord injury. So I think it's important to bring up the topic early on, to give the child permission to discuss it, but saying that you really need to know the situation of the child and the family, etc. So I think this underscores the need of clinicians to work closely with their patients.
Francesca Paola Pollitt
In this kind of patient also, do you think that it is useful to give them the opportunity to talk with their peer to peer consultant?
Dr Alexander
I suspect they will do that naturally. Yes, they should certainly have other peers to talk to. They're probably going to be there on the internet looking for information too, you know, how did we all learn about sex? Right? We just went and either looked for information, or found out ourselves, or talked to our friends. So it can be almost anything.
Francesca Paola Pollitt
The question regarding the point that you just started, because of course, especially in adolescent patients, pregnancy can be a non voluntary factor. But in some cases, women and men with the spinal cord injuries can want to become parents. So what about their fertility, the pregnancy, in people with spinal cord injuries? What are the different approaches or the different treatment strategies for women and men?
Dr Alexander
So when you think about women with spinal cord injuries, you've got to take into context what phase of life they’re in, right? There can be young women, there can be middle aged women, there can be older women, obviously, if women are postmenopausal, fertility is not an issue for them. But if we’re talking about younger women that want to achieve pregnancy, really spinal cord injury is not necessarily a burden.
In fact, it becomes the other issue after spinal cord injury women become, they have some period of Amenorrhea, and then many women will resume their normal periods. But the reality is, there is a lower incidence of fertility in women with spinal cord injuries, but that's multifactorial.
I do believe women make a choice after injury, whether they want to have children, and many women are not having children because they think of the burdensome aspect of living with an injury and having a young child and caring for them. Those issues really can be conquered, and if women with spinal cord injuries do want to get pregnant they can.
It's a matter of again making the choice, having a partner and then having proper care. There are special considerations during pregnancy with spinal cord injury in terms of positioning of the body, transfers being more difficult. The issues of labour as you get closer to pregnancy. Sometimes people have confused preeclampsia and autonomic dysreflexia. So there are issues that go on with time. But pregnancy can certainly occur with women and spinal cord injury. And you know, it's a great thing. You know, it's wonderful to have children.
So with women, the issue becomes more understanding how your body reacts, and making sure you make appropriate contingency plans. Whether it be using contraception, or whether you're wanting to get pregnant. I would also say I just want to say for women, I think it's really important when women are in the time of life and they're sexually active. I think we have to think of a number of issues too. When we're dealing with adolescents, I think we really need to bring up the need for HPV vaccinations against cervical cancer with people. I think that's important. When women get older, we've got to make sure we think about the issues of breast cancer and screening and pap smears with time because sometimes these GYN issues get put on the back burner with women with spinal cord injuries.
Francesca Paola Pollitt
Thank you Dr. Alexander. And what about the men, Dr Sampogna?
Dr Sampogna
In case of inefficiency of a penile vibratory stimulation or electric ejaculation, people can undergo surgical sperm retrieval. At our centre, we perform a lot of testicular sperm extractions, with a very high successful rate in this key system. It is a very simple procedure. There is just a small incision at the level of the scrotum, we're able to extract the testicular parenchyma which is essential to our embryologist. Our embryologists are able to collect the spermatozoa and the spermatozoa can be frozen and used in the case of needles by the patients. So it is a very simple procedure associated with the high success rate and the patient can become a father, following the techniques that are now available all over the world.
There is a great debate about the appropriate timing after the spinal cord injury. In the past, all doctors suggested a very early extraction of spermatozoa after the spinal cord injury, because of the high risk or urinary tract infections, which could damage the testicular parenchyma. Now the opinion is slightly different, because we are able to offer an appropriate bladder and bowel management, which is associated with the significant reduction of urinary tract infections.
So the testicular parenchyma may be preserved over the years. And we are experiencing success also in people with known spinal cord injury. We have some patients who had a spinal cord injury about 20 or 30 years ago, and we performed successful testicular sperm extractions. So our message is to, of course, do the appropriate exams before this procedure. But we don't deny this opportunity, this solution in patients with all the traumas, and with all the spinal cord disorders.
And I think that this counselling should be performed also in adolescents, because Transitional Care is more and more important, and we should inform our young patients about the risk of damage of the testicular parenchyma if they're not able to go on with an appropriate bladder and bowel management. So this is the message.
Francesca Paola Pollitt
Thank you very much Dr Sampogna. I think that the time for our conversation is finished. But before I say a lot to our expert, I want to hear from them, if there is any message that they can give to our audience.
Dr Sampogna
My suggestion for all patients, is to go to the spinal unit which is near where they live, to discuss with the specialist about sexuality and fertility. Because I think that doing it by yourself is not the appropriate way to explore the sexual life after a spinal cord injury. But with an appropriate guide, you can have a great sexual life, and you can care, you can become father or mother in a very high successful percentage of cases.
Dr Alexander
So I've lived in a lot of different places. And one of the things I realise is that many people don't have a spinal cord injury centre to go to. So my big comment, in addition to Dr Sampogna and I know I agree with you, if that's something people do have available to them, but if they don't have information available to them, I think the message I want to give is that, yes, you can.
You can have an active sexual life after spinal cord injury, and you have the right for this. So if you do have an interest in sexuality and spinal cord injury, there's a lot of resources available on the internet, you can look for those resources, and you will be able to have some information there.
One of the things that I've been involved with over the past few years, is with funding in the US from the paralysed veterans. We did a 40 episode programme called ‘Everlasting Love’, which is available on Vimeo for free for people to watch. So it's actually 40 sessions/40 programmes about sexuality and spinal cord injury. And we go into a lot more topics there such as LGBTQ issues, such as sexual surrogates, and a lot of other issues. And I believe we actually show some sex toys. So I think if you're interested, please look for the information.
If somebody tells you no, don't take no for an answer. When I started working in this field, I had patients that told me their doctor says sex is dead. And that's not a good thing. But you know, when you have a spinal cord injury, if you had sexual problems before your injury, having a spinal cord injury is not going to solve your sexual problems.
So I think you've got to realise that you had a life, many people have had lives before their spinal cord injuries, and getting information from professionals and experts such as Dr Sampogna and myself is really important. But if you don't have access to someone like us, then please still search out the information, you will find it.
There is a book, ‘Sexual Sustainability’ that was mentioned by Dr Sampogna. It is available. We actually wrote it in English. It's actually available in Spanish, Italian, Greek, and Hindi. So if people do want to learn that specifically about spinal cord injury and really covers a lot of what we've talked about over these last couple episodes, that is available to on Amazon, and proceeds go to ‘Sustain Our Abilities’ in all honesty, no proceeds go to the professionals.
Francesca Paola Pollitt
I agree with you with this kind of vision about sexuality and sustainability, because the health of a person, also with sexual life gives family life. So I agree with you, it's a kind of sustainability. So I agree with you.
Regarding the conversation that we have today, we talked about sex toys, and the possibility to think about sex toys not only in instruments, but also in everything that we have in our mind. We talked about the proper management of bladder and bowel for proper sexuality.
We have talked about the possibility to use the CIC and the trans anal irrigation, to manage bladder and bowel. And it must be clear that if an accident happens, it's part of life. We talked about the possibility to talk about sexuality also in preadolescent and adolescent patients. And finally, we talked about fertility and the different treatment strategies for women and men.
It was a very pleasure for me to talk with you about this theme, this funny theme. And, again, I give you all my thank yous, for personnel and also from Wellspect, to you Dr Sampogna. And to you, Dr. Alexander. Thank you.
