Let’s Talk About Sex - Jenny Edwards (Clinical Nurse Specialist in Epilepsy), Swansea Bay University Health Board, UK
Sex! It's a key part of the lives of homo sapiens - including those with an epilepsy! Epilepsy Specialist Nurse Jenny Edwards shares how sexual dysfunction is more common in people with an epilepsy and how she provides support to her patients affected - whether issues be libido, dating, arousal, orgasm, penetration, masturbation, emotional relationships - anything, really! This is part 1 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
“I think it's one of those subjects that is… it's not controversial in any way and it shouldn't be, it shouldn't be, but I think people are so embarrassed by it. And I was thinking about this earlier, actually, I think you've already got stigma around epilepsy and then there's this as well.”
00:18 Torie Robinson
Sex. You think about it, I think about it, we are animals and sometimes some of us even do it! It’s part of being human to have a healthy sex life (if you desire such - not everyone does). But people with an epilepsy are more likely than most to have some sort of sexual “dysfunction” - for multiple reasons! Today we hear about this and how challenges can be spoken of and how they can be addressed - with the fabulous Epilepsy Specialist Nurse 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 loads more people learning about and developing a factual understanding of the epilepsies!
00:59 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, just off the M4, Morriston Hospital, haha! I work with 3 neurologists who are also epileptologists, so we're very fortunate in that respect. So, we have an open access service in Swansea; so our patients who are diagnosed and known to us, they can contact us however they want. So, we do that because it works for them, not for us. And I think that's the important thing about that service is making sure it's suitable for your patients. So, they don't have to wait for follow-up appointments. They can just give us a ring or drop us an email. We don't mind. I do a couple of clinics as well, set clinics a week. So, as well as running the open access between us. I have an antenatal clinic on a Monday, which I love! That's really nice. So, it's always been face to face, even during COVID that one, which was always...
01:56 Torie Robinson
Gosh.
01:57 Jenny Edwards
…lovely. Yeah, well, you know, obstetrician needs to see the pregnant lady..
02:02 Torie Robinson
Physically, yes, so you slipped in there!
01:57 Jenny Edwards
…so, we managed this. Yeah, we managed it. We did, which was great. And I also do a face-to-face clinic on a Tuesday morning, which is relatively new. That's been about a year. Before that, it was always on the telephone and trying to get a clinic space was a nightmare, but we did it in the end. So it's lovely to see my patients who I didn't know, face to face, previously, because of COVID!
02:27 Torie Robinson
Of course! And so what do you do that a neurologist or epileptologist doesn't?
02:32 Jenny Edwards
I think the main part of our role really is… I always think it's the people know that we're there. You know, without fluffing it up too much, it's knowing they have a contact and someone they can trust and they can ask anything of. So, a big part of our role is seeing people who've been newly diagnosed and going through all this stuff that it just might have been really overwhelming in the appointment with the neurologist:
the diagnosis, you know, what that means
what the future holds, you know;
Medication - do I have to stay on it forever? Can I stop it at some point?
!One of my friends told me I have to stay on it for 2 years and then everything will be fine”...
…you know, have you had all sorts really, really, really, hehehe!
03:11 Torie Robinson
Wow, wow, if only that was the case!
03:13 Jenny Edwards
I know, I know. That's like just one example! SUDEP, you know, always is a scary thing to talk about, but we have to talk about it. And you know, our consultant neurologists as well, they are really good at talking about it, but it can be a bit scary, so, you know, kind of nailing that down and going through what it means, what are the risks, how can we reduce those risks, making sure that people know nothing's off the table to talk about, really, with an epilepsy nurse. And if it is, shouldn't be, we should be that link. You know, we should be, we should be approachable.
03:52 Torie Robinson
No, totally. And I think… do people tend to have a little bit more time with you than the neurologist as well?
03:57 Jenny Edwards
Yeah, yeah, we generally do half-hour slots in our face-to-face clinic and anyone in the team will tell you I'm not very good at timekeeping, haha(!), so my clinics will run over quite a lot, haha(!), but I think I've probably learnt that from a neurologist I used to work with in Newport, we'll mention no names, hahaha!
04:17 Torie Robinson
Ha! Blame somebody else, definitely!
04:20 Jenny Edwards
Yeah, it's all her fault but you know patients don't seem to mind, I think, as long as even if they've waited 10-15 minutes longer, when they get the same as well so it's kind of okay. I'd prefer if I was better at timekeeping but you know! The open access is really good because there's no limit. I can be on the phone to someone for 10 minutes or an hour…
04:39 Torie Robinson
Wow.
04:40 Jenny Edwards
…you know, depending on what they need and, you know, the 3 of us we take that kind of stance really, that if people need you for an hour on the telephone it's obviously things are not good and we need to kind of work out what we're going to do! And, you know, one call can take over your whole day sometimes…
04:57 Torie Robinson
Ooh, gosh!
04:58 Jenny Edwards
…because there might need to be changes done, you know. We don't want people waiting for an appointment with a neurologist if they need something done urgently. So, it's them having trust in us, knowing they can talk to us about things, knowing that we can actually help in a tangible way. I think all those things are super important.
05:16 Torie Robinson
So, let's talk about… gosh, it made me think of the song! “Let's talk about sex, baby..”, haha! But often…
05:21 Jenny Edwards
Hahaha!
05:22 Torie Robinson
God, how old is that! But, things like sex for us as the animals we are, is something that people think about a lot. And often people with an epilepsy, I would say probably are more likely to have difficulties in sexual activities. And we often need somebody to talk to about that. And I think an epilepsy nurse can sometimes be the first point of contact.
05:47 Jenny Edwards
I would definitely agree with that. I think it's one of those subjects that is… it's not controversial in any way and it shouldn't be, it shouldn't be, but I think people are so embarrassed by it. And I was thinking about this earlier, actually, I think you've already got stigma around epilepsy and then there's this as well. So, you're coming to talk about something that embarrasses you, perhaps you're mortified by it's a new diagnosis, you haven't even told your best friend perhaps, you know, maybe only 1 or 2 people know. And then this happens as well, you know. So, you may have sexual dysfunction, it might be erectile dysfunction, it could be pain during sex, it could be any number of things, lack of libido. I mean, was having a…a think about this earlier and I was interested to learn that actually lamotrigine can have the opposite effect for women especially!
06:39 Torie Robinson
What? You take the Lamotrigine and you're like “Mmm, ding dong!”; you wanna do it more?!
06:42 Jenny Edwards
Yeah, it can make you, for want of a better word, little bit more horny! So, you know…
06:45 Torie Robinson
Huh!!! Wow!!!
06:47 Jenny Edwards
Which I didn't know! Haha!
06:48 Torie Robinson
Who knew?! So just going back what you said about, like, say, erectile dysfunction; so, you mentioned women: are they often, for example, so they experience vaginal dryness or tightening, and does the lamotrigine do the opposite?!
07:02 Jenny Edwards
Well, apparently, from what I read this morning, it seems to be the case, which is really interesting! And a lot of our women especially in antenatal clinic, you know, obviously things are going quite well if you're in an antenatal clinic!
07:14 Torie Robinson
Mmm, fingers crossed, yeah. At least at one point, yeah.
07:17 Jenny Edwards
Yeah, at least at some point, yeah. So, I mean, most of our women of childbearing age are on lamotrigine, so that is good to know, I think, it's really good to know because if it's a massive issue for a woman, you know, who's been newly diagnosed and they've been perhaps put on levetiracetam or brivaracetam - which aren't particularly noted as being bad for libido or things like that, but there's a lot we don't know - they could potentially reduce testosterone in women as well, which affects your libido. So, you know, if they're on something else like that and they're perhaps, kind o,f really struggling with their sex life, that's a really good option, isn't it, you know, the lamotrigine…
08:01 Torie Robinson
Mmm!
08:01 Jenny Edwards
…might actually help! So, you know, I've got no experience of talking about this with people, but it's something I will talk about in the future and I will bring up with the consultants.
08:12 Torie Robinson
Yeah, an alternative to viagra, just a bit of lamotrigine in there... I wonder how much they might need to get the benefits of that. It reminds me of the benefits to some people of lamotrigine of, what is it, mood stabilisation as well. 2 in 1, or 3 in one if it helps with the epilepsy!
08:32 Jenny Edwards
Yeah! I know what a great drug. Yeah, I know. And it is really well tolerated, isn't it, in a lot of people. So, maybe that's something we need to kind of consider when we're prescribing as well. You know, when the consultants are prescribing, maybe I'll bring this up in MDT next week!
08:46 Torie Robinson
Hmm, very interesting! And so for men, I would say - or people who consider themselves men - sometimes, I think it can be more obvious that they might have sexual dysfunction. Doesn't make it any more important than that for women, but (or people who identify as each) it can be a bit more obvious. Do you find that it can be a bit more challenging to bring it up with men or not?
09:14 Jenny Edwards
I like your choice of words there, haha! Yeah, it can be really challenging and I think men are often more reticent to discuss personal things like that, you know, so they… especially if they come with their partner or they come along with a family member, mum or dad or something, you know, it can be mortifying.
09:36 Torie Robinson
Well as a female I wouldn't fancy talking about that with my parents there, so…!
09:46 Jenny Edwards
Exactly. So, and it doesn't matter how old you are, I don't think it's still always going to be like “Oh God, don't talk about that in front of them!”, you know! So, we've kind of got around that in some ways. We've got an email service, which is completely confidential as well. So, they can reach out to us in a different way. And I think that's… for some younger people, that's been really helpful. We've had a couple of younger guys who've gone “Look, I'm having this problem. I'm only 23, 24. Is this right?”, You know. So, we've been able to kind of talk about that on email, which has been safer for them rather than, you know, and they've said “Don't mention it in my appointment, will you?!”, hehehe, you know! “Okay, we won't! Don't worry. Mum will be there. We won't talk about it!”.
10:21 Torie Robinson
What about putting on their letter, like summary of an appointment letter? Do you put it on that?
10:25 Jenny Edwards
So if we talked about it in the appointment, absolutely, yeah. And if we've made any, like if we've given any advice via email that we need to convey to the GP perhaps, then yeah, we would, and I would explain that. But then, they're adults, they don't need to show their letter to their mum or dad, I suppose. So, that would be for them to manage the best they can.
10:45 Torie Robinson
Yeah.
10:46 Jenny Edwards
But we have had parents ask about issues with their adult children. Because I think, especially mums who maybe are like “It's fine, let's talk about it.”, you know, maybe, hehehehe! I just dread to think while the young men are thinking! They just probably go “God, please don't do it!”!
11:03 Torie Robinson
And these young men whose mums are talking about their own genital sort of activity, do they tend to be sort of men, or older sort of adolescents with a regular sort of level of intellect or do they tend to be more those who have a intellectual disability?
11:25 Jenny Edwards
It might actually be mixture of both and we've had both! And I think that, you know, sometimes the questions may be about whether or not seizures can be triggered by orgasm, for example, which, you know, it is a thing!
11:39 Torie Robinson!
Well, they can though, right? I know people, I personally know people who this happens to. And I've told so many people, I have had a seizure during a shag before, long time ago, right? But I think people should be able to speak about these things openly. I mean, if you're really excited, you know, then it kind of makes sense to me, is that right?
11:57 Jenny Edwards
Yeah, absolutely. And you know, there are ways you can manage that. Maybe a bit of clobazam if, you know, you're, you know, guaranteed in! Haha!
12:06 Torie Robinson
“Guaranteed in”! Hahaha!
12:09 Jenny Edwards
You know, if you’re guaranteed a good night, then it could be that we could give some PRN and clobazam perhaps to stop the seizure happening (inevitably, if that always happens for that person). I suppose the most important thing [is] I would probably encourage them to speak to their partner. But they might not always be a partner involved is the other thing. It may be some alone time. Some quality alone time.
12:33 Torie Robinson
Actually, that's another thing, yeah, it's masturbation basically, I mean, and that's another really healthy thing for people to do, and some people more than others, more frequently than others. And gosh, yes, I know of a group of men who, yeah, they just every single time they orgasmed or ejaculated, they would have a seizure, and I just think “Oh my goodness.”.
12:53 Jenny Edwards
That's so traumatic though isn't it? You know…
12:56 Torie Robinson
Yeah!
12:56 Jenny Edwards
…for them! How do you tell your prospective new partner that you've just met and gone on a lovely date with, with the potential for a nice evening and then go “Yeah, this might happen.”, you know.
13:07 Torie Robinson
Or yeah, or by the way, I need to dope up first and then….
13:11 Jenny Edwards
Yeah, I'm just gonna take a sedative! What?! Hahaha!
13:14 Torie Robinson
Ha! And then that could potentially, actually… well, that could not potentially, actually, affect your ability to have an erection anyway?! It could take away the mood. And I suppose the same for women!
13:26 Jenny Edwards
And then you've got low mood (because of all this happening) so perhaps you prescribed antidepressants which also affect libido…!
13:33 Torie Robinson
Thank you to Jenny for making talking to your epilepsy specialist nurse about things like sex, doable! This was going to be just one episode - but Jenny and I couldn’t stop chatting(!) - so do join us next week where we continue our chat about having a decent sex life when you - or your partner - have an epilepsy!
Learn more about Jenny and her work on the website t-or-i-e robinson.com (where you can access this podcast, this 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 - make it clean(!) - and subscribe to our channel so we can get way more people learning about and having a better, a factual understanding of the epilepsies, around the world!
See you next week!
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