Flaccid? Dry? Disinterested? There’s Help! - Jenny Edwards (Clinical Nurse Specialist in Epilepsy), Swansea Bay University Health Board, UK
Epilepsy Specialist Nurse Jenny Edwards shares how she supports people who experience sexual dysfunction and epilepsy, focusing on the importance of open communication and building trust with patients. She emphasises the need for a holistic approach to care, including mental health support, and the significance of understanding the different types of epilepsy and their impacts on patients' lives. The chat highlights the challenges patients face in discussing sensitive topics and the vital role nurses play in facilitating these conversations. This is part 2 of 2 with Jenny. Transcription and links are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Jenny Edwards
“Some people just need a bit of reassurance that they're not weirdos or freaks or abnormal in some way. You know, at the end of the day, it's about reframing things sometimes and looking at “What are the causes for this? Is this just me or is it the medication…?”
0:15 Torie Robinson
Are you still thinking about sex? Well, if you are, it’s a good thing. Because, as this week is part 2 of 2 all about the sex lives of people who have an epilepsy, common challenges faced, and solutions to those problems - all with the cool, ultra-approachable Epilepsy Specialist Nurse - with whom you can talk to about anything(!): Jenny Edwards.
If you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel, so that we can get more people learning about and developing a factual understanding of the epilepsies!
00:49 Jenny Edwards
I'm Jenny, I'm one of the epilepsy nurses in Swansea Bay Health Board. I work in a team of 3 epilepsy specialist nurses in the southwest of Wales.
0:58 Torie Robinson
From the patient perspective, if they spoke to you, like, “Oh, I can't stop taking this medication because of my seizures or because I will have a seizure during sex, but then I am struggling to now get an erection or be ready for sex or get moisture in one's vagina because of it.”, you know, is there hope?
01:16 Jenny Edwards
There's always hope. There's always hope. And the first step is talking about it. Because I might not have the answers, but I'll really try hard to find out. And I think I've spoken to some of the neurologists about this past and present that I've worked with, and we've been in some really interesting conversations with patients about how we can move forward. So, the ones who are able to be really honest about it and say “I really need help here.”, you know, they’re the ones you can kind of go “Right, what can we do?!”. And then you know they're open to basically any suggestions. And that could be things like taking a bit of Viagra, perhaps.
01:56 Torie Robinson
Mm-hmm.
01:57 Jenny Edwards
You know. It could be the answer for some people. The answer for other people may be thinking about the other medications they're taking. How can we better manage that? Are there certain medications that wouldn't have the flattening effect that antidepressants can sometimes have or the issues that anti-depressants sometimes have. Or, you know….
02:16 Torie Robinson
Excuse me, but I like the, sorry, I like the word the “flattening”...
02:19 Jenny Edwards
Oh yeah, I didn't think of that, hahahaha!
02:22 Torie Robinson
I'm so mature, sorry, carry on.
02:24 Jenny Edwards
I'm just as bad, it's fine. But you know, it's about having, looking at the bigger picture, seeing what we can do. Is it that, you know, is there something you could introduce into your sex life that would be more stimulating or help you feel more relaxed and more able to kind of enjoy the process?
02:42 Torie Robinson
Yeah.
02:43 Jenny Edwards
You know, that could mean anything, couldn't it? It may mean having conversations with your partner, maybe planning through the day, you know, maybe some text exchanges I don't know, haha!
02:54 Torie Robinson
Like “Darling, ding dong, we wanna make this a little bit better!”.
02:56 Jenny Edwards
Yeah! You know, how do you spice it up really?!
03:00 Torie Robinson
And again, that's assuming one has a partner, not if somebody… you don't know….
03:02 Jenny Edwards
Yes, and you don't… yeah, and you might not, and it might be just about, you know, being able to masturbate happily without thinking “Oh god!” You know “My mum's gonna have to come in because I'm gonna have a seizure at the end of this”, can you imagine?!
03:17 Torie Robinson
Or, it takes longer because…
03:19 Jenny Edwards
Yeah!
03:19 Torie Robinson
And then if it takes longer, you'll get worried that it's taking longer and then it's not gonna happen, right?
03:24 Jenny Edwards
And then ”I'm frustrated and angry and, you know, what's the point?”.
03:29 Torie Robinson
What do you think also about making people just generally feel better about themselves? Because I think that can be really important, especially if you're in this situation. I was just thinking of exercise, for instance, can bring a lot of more positivity and maybe more confidence to some people.
03:47 Jenny Edwards
100% here. I think it's about finding the joy in life, isn't it, in general? I think if you can find joyous things that you love - that's not all about sex of course, although it’s really important(!) - you know; if the other aspects of your life are better…
04:02 Torie Robinson
Yeah.
04:02 Jenny Edwards
…then, you know, things will improve. And I'm a great supporter of people having antidepressants, you know, if they need them, especially with epilepsy, they're 3 times more likely than other folk to struggle with mood and anxiety. So, unless we treat those things - we know they're triggers for seizures as well - then things can get worse all around. But it shouldn't just be about the antidepressants, should it. It's got to be the whole picture, you know, talking to people, maybe having some supportive counselling. We're very fortunate in Wales that we've got Epilepsy Action who provide counselling to our patients and it is fantastic. And the feedback we've had is brilliant. We've had people ask if they can have more sessions, you know.
04:45 Torie Robinson
Oh really?! Great!
04:45 Jenny Edwards
Yeah!
04:48 Torie Robinson
And I think there are actually more opportunities out there for things like that, it's just that generally we don't know about them. So, I'd say do reach out to your epilepsy nurse or your neurologist, epileptologist and/or just Google it. There are some therapists out there and not everyone charges like with Epilepsy Action. It's free, right?
05:08 Jenny Edwards
Yeah, it is free and you know, we've… and I'm not sure about the situation in England… but we've also got access to online CBT
05:16 Torie Robinson
Mmm!
05:17 Jenny Edwards
…which is really good through SilverCloud so anyone in Wales can access Silver Cloud which is really helpful as well. I'm sure he wouldn't mind me saying; my partner doesn't have epilepsy but he has access to SilverCloud when he was struggling with some anxiety and low mood and he was like “It's great!” and he's a big burly carpenter, you know, he's not the type you'd think, yeah, he'd be down for counselling!
05:39 Torie Robinson
But that's like anyone that can benefit from counselling. It doesn't matter male, female, in between, you know, or whatever your background, it can.. and not all… the first type of counselling doesn't always work and that's fine, right? Or if you see a counsellor, you might not click and that's fine, but there will be somebody out there and a type of therapy that can help you. Just don't give up.
06:03 Jenny Edwards
No, never give up. And for some of our patients, I think it's fair to say that it's the epilepsy nurse who's the one who they feel safest talking to. And we, you know, if we can help, we will. You know, we're very honest about our limitations around those things. But I mean, myself and one of the other nurses in our team, we've both got mental health background…
06:25 Torie Robinson
Okay!
06:26 Jenny Edwards
…you know, so that does give us a little bit of, maybe insight, and, you know, we perhaps think about things in a slightly different way…
06:34 Torie Robinson
A more empathetic way, think, not just from a… certainly not a judgmental way and not a necessarily even a diagnostic way, just you’re empathetic
06:43 Jenny Edwards
Yeah, and sometimes the best thing you do is just listen, isn't it?
06:47 Torie Robinson
Oh, completely. I used to have an epilepsy nurse and she was just wonderful. We have they're not all female, right? So we have people of all sexes and yeah, and they were just really lovely. I felt I could just open up to them and there was less of a time limit on how long I had with them and it's almost like you guys are kind of counsellors yourselves really!
07:15 Jenny Edwards
Yeah, it does feel like that is a big part of the role, whether it's, you know, official or not! And you know, and I think it all comes down to trust. And one of the things we found in our team is that some people will ask for one of us by name because they feel a bit safer, perhaps. And that's fine, too. I don't mind that. You know, and we, there's 3 of us, so we can, kind of, you know, say “So-and-so rang for you, will you give him a ring?”.
07:40 Torie Robinson
And it's not offensive to anybody. It's just who you click with.
07:44 Jenny Edwards
Yes, and that's normal I think.
07:47 Torie Robinson
So, Jenny, the idea of normality bores me, I say, but a lot of people with an epilepsy and often other morbidities that can come with it, feel like a bit of a freak. They are abnormal and that can be isolating for them. I think epilepsy nurses can really help with that. What do you say?
08:11 Jenny Edwards
Yeah, I completely agree. I think some people just need a bit of reassurance that they're not weirdos or freaks or abnormal in some way. Because, you know, at the end of the day, it's about reframing things sometimes as they're looking at “What are the causes for this? Is this just me or is it the medication or is it a combination of my condition, the medication and me…”, you know, whatever it may be, but just knowing it's OK to kind of talk about it and find out together. Because that's a big part of our role; is going on a journey with someone and getting the answers for them. And we can't always get the answers, but we can find solutions.
08: 51 Torie Robinson
Yeah..
08:54 Jenny Edwards
It's like having a diagnosis of epilepsy, isn't it? And I know that's something you were really keen on raising awareness about is it's not just epilepsy, it's the epilepsies, and they're all different, and you know, temporal lobe epilepsy may more affect your sexual health and your mental health.
09:15 Torie Robinson
And why is that?
09:16 Jenny Edwards
I'm not entirely sure and I'm going to have a good look at this actually and I'm going to speak with Owen and Rob about what their thoughts are about it. Because it's something I came across today when I was having a little look through, you know, lamotrigine, and things like this being useful
09:32 Torie Robinson
Aha!
09:32 Jenny Edwards
It's something that came up, that temporal lobe epilepsy apparently can affect your sexual function more so than other types of epilepsies.
09:41 Torie Robinson
Which is a real bugger, isn't it? Because it's the most common type of epilepsy too!
09:45 Jenny Edwards
Yes, and your memories affected, so…
09:48 Torie Robinson
Yeah!
09:49 Jenny Edwards
…I'm like, yeah “Oh great that's another one to add to the list then!”, you know and…
09:51 Torie Robinson
Great!! Hahahaha!
09:53 Jenny Edwards
Yay!! Hahaha!
09:56 Torie Robinson
Not that I'm saying people don't experience these things necessarily with other epilepsies. It's just more common in the temporal lobe epilepsies. And yeah, if people know that, okay, first, the most common type of epilepsy, and it's so much more common in people with temporal lobe epilepsy, that's a few million people that are affected by very similar, if not identical symptoms as you, which includes sexual dysfunction.. I don't know if you even like that term, but problems basically having sex or a shag or whatever you want to call it.
10:23 Jenny Edwards
And it makes you miserable. You know, if something makes you miserable, we've got to find ways of you not being so miserable and helping you not be so miserable. You know, and that can look like any number of things for each person, can't it? And I think the relationship between the epilepsy nurse and the patient is really crucial. You haven't got trust, you're not going to move forward with any of these things at the end of the day, you know.
10:47 Torie Robinson
For people that don't have an epilepsy nurse (which is the majority of people in the world), how would you propose bringing it up? A patient bringing it up and how would you propose the clinician bringing it up?
11:00 Jenny Edwards
That's the million dollar question for me, I think. I always try and look for “ins”. I try and, you know, if say a male patient is on valproate, we've gone in, you know, because we have to talk about the potential for babies (you know, having malformations…
11:20 Torie Robinson
Mm-hmm.
11:20 Jenny Edwards
… should they conceive when they’re taking valproate or should their partner conceive when they're taking valproate). So, you can't go on in to talk about sex then and say, you know “How are things?”. And you know, most men would probably, like, clam up if you just said, “So, how are things in the bedroom?”. You can't just go in with a question like that. That's just, you just be like, why are you asking me this?! Hahahaha!
11:39 Torie Robinson
Although to be fair, loads of women would too. They'd be like “I can't believe you're just asking me that!”,
11:43 Jenny Edwards
Yeah.
11:44 Torie Robinson
Especially if they're not prepared, right?
11:44 Jenny Edwards
Yes!
11:45 Torie Robinson
So sometimes it might take more than one appointment to get in there.
11:49 Jenny Edwards
Yes, and that's what I feel about having that kind of relationship, building that relationship, building trust and knowing... ‘cause one of the most important things I think we say in appointments is “You've got open access. That really does mean open access.”. And I have patients who ring me every week.
12:05 Torie Robinson
Hmm.
12:05 Jenny Edwards
I've patients who email 2 or 3 times a week. But that changes depending on the need. So, you know, if they'll have times where I'll get 4 or 5 emails in a day and we'll have a little bit of a conversation. And other times we haven’t heard from them for a year and a half because everything's going well.
12:21 Torie Robinson
Which is good!
12:22 Jenny Edwards
Yeah. They know I'm there when they need me. So, it might be a year and a half, but I'll still answer, you know, when they email. So, building trust is super-important. I think some people are just more open and maybe feel it's a more important thing to discuss, maybe for them. Other people don't want to embarrass us. And I just want to say, please don't worry about that. There's nothing I haven't heard, I promise! Hahaha! There's probably… I long for the day for people to ask me a question I haven't been asked before, because, you know, we thrive on that, hahaha!
12:58 Torie Robinson
I bet. But what would you say, though, for when people don't have “you”? What happens? What are the tips?!
13:05 Jenny Edwards
Have you got a good relationship with a neurologist? If not, do you have a good relationship with a GP? If it was me, I think I would probably make an appointment with a practice nurse if it was something that I thought needed, you know, a clinical…
13:16 Torie Robinson
The GP practice nurse?
13:18 Jenny Edwards
Yeah, because my own experience with talking with the GP is very often they don't remember me from the last time they saw me, you know, or it may be a locum, and they're all very good, you know, no criticism there, but the GP…
13:34 Torie Robinson
I get it.
14:34 Jenny Edwards
…practice nurse, they've got a bit more time, a bit like us. If you haven't got an epilepsy nurse, maybe you could, say, look, you know “I need some help. I don't know where to go with this.”. They're easier to talk to, more approachable.
13:46 Torie Robinson
There are some lovely GPs, but yes, I think, generalising it, I think the nurses are often more trained to be… to listen for longer and…
13:56 Jenny Edwards
Active listening, isn't it?
13:56 Torie Robinson
Yes. Thank you so very much, Jenny. This has been great. I love that you're so open talking about these things, because these things are so crucial to the animals that we are and our quality of life. And, you know, I don't know if, as a species, we’ll be embarrassed about talking about them forever, maybe because “My goodness…
14:17 Jenny Edwards
Yeah….
14:17 Torie Robinson
…it's one's bits, one's genitals, ummmm!”. But…
14:21 Jenny Edwards
Hahaha!!
14:21 Torie Robinson
…I hope, but knowing that there are others there that we can talk to, take us seriously, who don't laugh at us (that's really important), and knowing that we're not alone, and shouldn't be ashamed for talking about and seeking help for issues with sex! And that’s what we need, so thank you.
14:28 Jenny Edwards
100%. You know, I don't want anyone to have their life ruined because of something they can't feel comfortable talking about, you know. If we can help, we should.
14:49 Torie Robinson
Again, thank you so much to Jenny. These are real, very common sexual challenges faced by people with an epilepsy (well, actually, people without an epilepsy as well!) and their partners - and so it’s great to know that there’s hope and even solutions out there!
Do learn more about Jenny and her work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of this entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so that we can get way more people learning about and having a better, actually, a factual understanding of the epilepsies.
See you next week!
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