S5E24 Menopause and MS Roundtable

6:42 Dr Kate Petheram: “Because of the overlap in symptoms. There are perhaps elements which are so relevant to menopause, which we can perhaps talk about as well in terms of symptoms such as hot flushes and heat intolerance, which again may exacerbate symptoms of MS. So, there may not be a biological difference, but the symptoms of menopause and perimenopause may influence and make worse MS symptoms, which is why I believe it’s so important to recognise and point women in the right direction to get the right help.”

15:19 Dr Siobhan Kirk: “There is no evidence that HRT causes breast cancer. But if you’re taking extra hormones, and you’ve got abnormal cells, then the extra hormones can promote the growth of the abnormal cells. There’s no increased risk of breast cancer with use of HRT under the age of 50, for earlier menopause, because you’re just replacing what the uterus should be producing.”

34:12 Dr Jonathan White: “It is reassuring [for] someone living with MS to know that there is just a colossal amount of research going on around the world on all sorts of aspects of living with MS. I feel like reproductive health and women’s health is getting to that place slowly. There’s a really big push, I can see that in the research community and I’m glad to hear that menopause and post-reproductive health is getting it too.”

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Overcoming MS  00:01

Welcome to Living well with MS. This podcast comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Don’t forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let’s meet our guest

Dr Jonathan White  00:34

Hello, everybody, and welcome to a really special episode. I am absolutely delighted to be talking about women’s health and MS today, many of you will know me. I’m Jonathan White. I’m an obstetrician and gynecologist living with MS. I also work as a medical advisor for Overcoming MS the UK registered charity. I am thrilled to be joined today by two titans in their respective fields I can say safely. I’ve got Kate Pethjeram consultant neurologist based in Sunderland, the Northeast of England and Siobhan Kirk, who is a menopause specialist based in the Belfast trust in Northern Ireland. Kate, Siobhan you’re both very welcome. And thank you so much for joining me. So I think I might start with Kate, if you don’t mind, first of all and say why? Why are we all we’re all sitting here menopause is very in vogue. Everybody talks about it all the time. I feel like we don’t talk about a lot in MS. But why? Why does it matter Kate? Why is this important?

Dr Kate Petheram 01:33

So I think it’s important because it’s common, we recognize that MS is more common in women. And at any point about 30% of an MS population will be perimenopause or postmenopausal. So it’s really important that we’re as neurologists aware of the menopause as for perimenopause, as potential causes for symptoms and problems. And if you line up the symptoms, if you kind of write a list of the MS symptoms, common MS symptoms and common menopause symptoms, there is a striking amount of overlap. And if we’re going to give advice to people about the symptoms that we’re trying to treat, then it really makes sense that we understand what the cause of those symptoms are or potential causes. Because then we can try and give the best advice and the best treatment. I kind of pulled out my kind of top three and I gave a similar talk on menopause at a meeting and actually found out one of my patients that she agreed with my kind of top three overlap symptoms, which are problems with sleep and fatigue problems with mood condition and mental health problems with urinary and sexual function. So I think those are the three common symptoms, which are lots of other overlapping symptoms, but those are perhaps the top three and so but if as neurologists were not aware that these may be driven primarily by hormonal changes, then we may not giving the best advice as to how best to treat them. So that’s why I think it’s really really important.  For what it’s worth, I think you’ve hit the nail on the head there I couldn’t agree more. This is yeah, this is an absolute no brainer topic. I think it’s fantastic to be exploring it. I just don’t think we do it often enough. So Siobhan moving on to you, because I know you’ll be wanting to answer this question. What the hell is the menopause? As as a as a general gynecologist who doesn’t know very much about anything but especially about post reproductive health. Enlighten me please as to what the menopause is.

Dr Siobhan Kirk  03:33

The menopause is the last menstrual period. So it’s diagnosed after a year of no periods. So it’s often retrospective. It can happen immediately if both ovaries are removed either on their own or at the time of hysterectomy. Or women can be through an intermediate menopause if you have chemotherapy or radiotherapy for some cancer treatments. The average age of the menopause in the UK is 51. And as far as I’m aware of there is no evidence of earlier age in menopause in women with MS. The perimenopause is the term given to the months or years leading up to the last period and that can last for many many years. So quite often women in their 40s start to have some symptoms which they may not always realize are menopausal that can be heavy periods, slightly irregular periods, more PMS, headaches, mood swings, palpitations, again some of the same symptoms that Kate mentioned there. One and 100 woman will go through an early menopause under the age of 40 and that’s called premature ovarian insufficiency.

Dr Jonathan White  04:48

I was given that three in four people with MS are female that most of them are diagnosed between 20 and 40. This is going to be a significant issue for a lot of people living with MS is the fact that their MS came first and then they have to see what the menopause will then do to it. Is that Is that fair to say? I’m wondering what what do we know about the effect of menopause on someone’s MS? If that is a fair question.

Dr Kate Petheram  05:15

I think it’s a really fair question. And the sad thing is we don’t have very, very good answers. So there are some small studies, most of the studies are small. And there have been conflicting studies about a whether menopause has an effect on relapse rate. And or whether it has an effect on progression and worsening disability. It’s quite complex, because as we’ve kind of alluded to menopause occurs at a stage in the MS disease course where relapses may be reducing, anyway. And progression may be becoming more apparent, anyway. And we also know that MS being an autoimmune condition that the immune system changes with age. So the kind of interplay is quite complex, and we don’t really have the answers. But the overall kind of aggregation of the evidence suggests that there isn’t a significant impact of menopause on relapse or progression is the bottom line essentially.

Dr Jonathan White  06:23

So I think so that’s really helpful. So actually, if we’re, if we’re saying, okay, so your MS may naturally get worse with age. But we we think, at the moment with our lack of evidence, and what we do know that perhaps menopause alone is not something that’s significantly driving your MS to deteriorate or exacerbate or progressive or sign because

Dr Kate Petheram  06:41

Because of the overlap in symptoms. And there are perhaps elements which are so relevant to menopause, which we can perhaps talk about as well in terms of symptoms such as hot flushes and heat intolerance, which are again may exacerbate symptoms of MS. So you there may not be a biological differences, but the symptoms of menopause and perimenopause may influence and make worse MS symptoms, which is why I believe it’s so important to recognize and point women in the right direction to get the right help.

Dr Jonathan White  07:12

You know that I was actually about to say that. You’ve taken my thing, which is going to be a quality of life issue. And then you exactly you sort of pulled it out and made it much more susinct. So well. Thank you very much for that kit. That was brilliant. So, Siobhan, we’ve sort of touched on this and I think it would be really helpful if you could explain to us from this sort of the gynecology perspective, what sort of symptoms somebody may experience, specifically with menopause, that you as a gynecologist can help with.

Dr Siobhan Kirk  07:45

There’s multiple symptoms really jolly menopause affects the whole body, there’s estrogen receptors in your brain and your bladder, your heart, everywhere. From a gynecology point of view sometimes that as I mentioned earlier, the most common symptom would be a change in periods. Irregular Periods, sometimes more prolonged, or heavy periods. Or lighter periods or periods stopped completely. So obviously, there’s gynecological treatment options that can can help with that particularly Mirena coil.

Dr Jonathan White  08:19

And what about the traditional phrase, we use the vasomotor symptoms of menopause, the thing, the typical

Dr Siobhan Kirk  08:25

The symptoms that everybody associates with the menopause, the flushes, sweats, particularly night sweats, which obviously then disturb sleep and can have a knock on effect the next day, if you didn’t get a good night’s sleep, you’re going to be tired. The next day, so it’s all a bit of a vicious cycle.

Dr. Jonathan White  08:47

It’s not a surprise that we’re going to start talking about hormone replacement therapy, but perhaps you could explain for us briefly what what we mean by that phrase. And how it may be of use, then.

Dr Siobhan Kirk  08:57

It’s hormone replacement therapy, and it’s usually fluctuating levels of the hormone estrogen, and then eventually lower levels of the hormone estrogen and post menopause that can cause the symptoms. So replacement with estrogen is the most effective treatment for women who are suffering significantly. Progesterone is another hormone that only needs to be added in. Women that still have a uterus because it’s needed to protect the lining of the womb from the effects of estrogen.

Dr Jonathan White  09:28

Yeah. And I think I’m right in saying that HRT does not solve all the problems of a woman’s life after the menopause, but it can significantly improve their symptoms of vasomotor problems. Secondary menopause. Is that fair?

Dr Siobhan Kirk  09:42

Yeah, yeah, it can be life changing for someone. There is a lot of media hype about HRT. More and more women I think are having unrealistic expectation expectations and expect them to feel better than they’ve ever done in their life by 75% of women will have symptoms. Not everybody will get menopausal symptoms, I think it’s important to realize that about 75% of women will have symptoms. And for 25% of those, they will have significant symptoms. And for those women, the benefits of HRT usually outweigh the risks.

Dr Jonathan White  10:17

And I think we’ll get to that actually, I think it’s really, really important to frame some of the myths and misconceptions about HRT. But before I do that, Katie, do we know anything about specifically, say, people with MS taking dmts disease modifying therapies? Do we know anything about the safety of HRT, in that specific instance.

Dr Kate Petheram 10:39

It is no concern, essentially, that so this is I think, sometimes the the most important thing we can do as neurologists and and secondary care clinicians is to reassure a woman and their primary care doctor or GP, that there is no contraindication, to a woman with MS. It honors disease, modifying therapy, or not being prescribed HRT, because there are lots of myths and preconceptions about that, but we have no evidence that they interact, and, you know, a women’s menopause should be treated, you know, the same essentially. If, in fact, there was probably I don’t know, we’re gonna go on to talk about this as well. Some other long term health benefits to HRT, such a which perhaps, you know, even more important to women with MS that we’re talking about kind of bone health risk of fragility fractures, kind of cognitive impairment, long term cardiovascular risk factors. So I think it’s as if not more important that women are empowered to, you know, ask for HRT where it’s where you’re going to where it’s apropriate.

Dr Jonathan White  11:50

And I think that’s hopefully the soundbite of this entire episode, because I know that Siobhan and I were talking about this before, a few weeks ago, when we met and this idea that you’re being denied HRT by virtue of having MS from some strange paternalistic view that somehow I mean, I can’t Siobhan can you I can’t join the dots and see why anybody would deny someone it but no, I get

Dr Siobhan Kirk  12:13

I get a lot of referrals, please see menopausal has MS. And I’m thinking, so what? Give them that HRT, you know, I think it’s maybe the medication for MS. They’re worried there may be drug interactions, whether whether that’s the reason I’m not sure.

Dr Jonathan White  12:31

it’s frustrating, we come across this and lots of things, I think with it both in gynecology and an MS. But this that is particular I just feel it’s it’s I did it is probably paternalistic. It’s like the old adage of don’t exercise with MS that I was told, even when I was diagnosed in 2015, don’t put your heart rate up too high. And you just think well, that that’s actually the exact opposite of what you should be doing. And in fact, is just wrong. And I did it. And I feel like probably hopefully, through the best of intentions, a lot of our colleagues are denying people something that can make a huge difference to their quality of life. So I’m really glad that you were both incredibly directive on that point. And I hope a lot of people will hear that message Siobhan I wanted to ask a few. And this is actually probably for my benefit, more than for the people listening but just some of the myths and commonly asked questions, misconceptions about HRT if you will indulge me one thing that I see in GYN clinics all the time, people saying I’ve had irregularity, my periods and some night sweats and flushing, and my GP has done a hormone profile. Is there any role for blood tests in diagnosing diagnosing menopause?

Dr Siobhan Kirk  13:35

In younger women? Yes, you know, with all the hype about menopause, there’s a lot of women in their late 30s thinking that they might be menopausal. So in that age group, it is good idea to get a clinical diagnosis with an abnormal follicle stimulating hormone FSH level, we would go by, and British Menopause Society recommend that blood tests are not required over the age of 45 for diagnosis and menopause. So if you’re over 45, you’re going to be Peri menopausal, whether you’ve got symptoms or realize it yourself. The difficulty age group is the early 40s, where they probably are Peri menopausal. Hormones are checked maybe several times and they’re normal. And in that case, it’s always worked with trial of HRT, you know, there’s no harm in having a trial and if their symptoms improve, then it’s reasonable to continue with treatment.

Dr Jonathan White  14:29

But what you’re saying then is that the hormone profile test particularly useful anyway. Yeah, and it only remains abnormal consistently post menopause, and you.

Dr Jonathan White  14:41

And you don’t base your treatment decisions by HRT based on it anyway. Is that fair to say?

Dr Siobhan Kirk  14:45

Yes. And the same with monitoring treatment. There’s not usually any benefit in measuring hormone levels once women are on treatment, but there’s a lot of misleading information out there and slightly unusual practices and some private clinics.

Dr Jonathan White  15:02

Yeah, absolutely. Okay, thank you that that one, that one’s helpful. What about someone who has a family history of breast cancer? This is one that I have personally interested in that I hear quite a lot people saying, well, I can’t have HRT because my mother had breast cancer.

Dr Siobhan Kirk  15:19

And my specialist clinic, a lot of my referrals would be for discussions around the risks and benefits for a woman with a family history if they are thought to be higher risk, and they’ve been referred to genetics for advice about that. And they’re having an enhanced screening, then ideally, they should avoid HRT. Plus, there is a very slight increased risk of being diagnosed with breast cancer. If you use any HRT another biggest risk is probably their family history. And there’s no evidence that HRT causes breast cancer. But if you’re taking extra hormones, and you’ve got abnormal cells, then the extra hormones can promote the growth of the abnormal cells. It’s dependent there’s no increased risk of breast cancer with use of HRT under the age of 50, for earlier menopause, because you’re just replacing what the uterus should be producing.

Dr Jonathan White  16:09

Yeah. And, again, I might be wrong on this. But my understanding is that the risk of breast cancer is much higher in those people who drink excessive amounts of alcohol, who were very overweight than any amount of HRT anyway.

Dr Siobhan Kirk  16:20

Yeah, a body mass index over 30 doubles your risk of breast cancer is a much greater risk than anything else, age and being a woman and the other biggest risks, which there’s nothing we can do about those.

Dr Jonathan White  16:33

And on the subject of weight gain, does HRT cause people to put on weight?

Dr Siobhan Kirk  16:37

No, as you said, there’s no calories and HRT same as the contraceptive pill. In the menopause, you do get changes in your body with the menopause, and you’re more likely, your body shape changes tend to get more fat distribution, around the middle, there are changes going on. No evidence of HRT causes that. Some older woman actually, when they stop HRT find that they then gain weight, so that there is some evidence of HRT may actually be of benefit rather than actually causing weight.

Dr Jonathan White  17:08

This is one I don’t really know the answer to, but is taking HRT just putting off the inevitable, are you just going to suffer all of these symptoms when you stop it, whether that be two, three or five years down the line?

Dr Siobhan Kirk  17:19

No. And that’s quite a common reason for women putting off starting treatment, because I think they have to go through it at some stage. There’s no arbitrary time limit for HRT use, and every woman is different. Short term use of HRT would usually be two to three years, at least, it’s not something that you’re going to stop after three months, and expect your symptoms to change. What it does is it alleviates the symptoms. So if you stop it, and you were still going to have the symptoms, the symptoms are still going to be there. You know, there are some women hold off HRT and don’t think, Oh, my symptoms are going to go and then they get into their 60s and realize that symptoms are as bad as ever, but they’ve missed the boat. The sooner you start HRT, they’re better because Kate mentioned the benefits of heart and bone protection. If you start at 10 years after the menopause, you’ve missed the boat that missed the boat a bit for those benefits.

Dr Jonathan White  18:15

And for those people who have concerns about heart to heart risk, dementia risk, those sorts things, what would you say to them

Dr Siobhan Kirk 18:22

lose that evidence is a window of opportunity. If you start HRT within five to 10 years of the menopause, it can actually be cardio protective, it can improve lipid profiles and reduce coronary artery disease. Dementia, there needs to be a lot more research done. And there’s evidence that starting HRT if cognitive function has started to decline, that it may accelerate that, and again, some evidence that it may be off of benefits. And but again, that’s not an indication at present to take HRT.

Dr Jonathan White  19:01

I think that brings me really nicely onto something, I get a lot of queries in one of my roles, working with the charity is to answer queries coming in from the community. And a lot of people will say, Should I start HRT, because I have MS? Obviously, I’m female, but I’m postmenopausal. But do you know what I mean? That they’ve they’re starting to see this, this little pieces of information that are sort of out there. And they see all these wonderful stories that certain celebrities are publicizing. And they think, Oh, hold on, this might help my immune system and might help all these other things that might interact. My MS. What do you think?

Dr Kate Petheram 19:33

So I think that is a really, really good question. And I still think, and I hope everyone would agree with me that the best reason for teaching starting HRT is symptom alleviation. So I think if I didn’t have symptoms of menopause, I don’t think that would be there. There is good evidence to suggest that you should be starting HRT anyway. And I think there is like I alluded to some benefits in terms of bone health and protecting that and if people with MS may be more prone to, to falls and fractures in certain situations that there may be benefit from that point of view, but but I think really the evidence and benefit from HRT comes in symptom alleviation. I think there have been various debates in the neurology world should or women with MS be started HRT. And I think usually the person trying to argue that loses. Because whilst every woman should be given the opportunity and empowered to have it, if it’s going to help their symptoms, it shouldn’t be something that started without kind of clinical need to if that makes sense. I have something very quickly to add.

Dr Jonathan White  20:43

Please, please do go on ahead.

Dr Kate Petheram  20:45

So So I think the other the other thing, just to add is that there are some in terms of impact of HRT on MS symptoms do we know it works? We don’t know. But there are some very small studies, very old studies showing a benefit of HRT, from kind of MS symptoms, whether that’s the overlapping ones we’ve discussed is unclear. And there is a study from Denmark, which was a big cohort study, but didn’t really show an impact in terms of disability. From from having been being treated with HRT, or relapses, so probably doesn’t have an effect on disease course. So the main reason for taking HRT is for symptom alleviation. As with any other woman,

Dr Jonathan White  21:28

To be absolutely clear, there’s no reason why they shouldn’t try and help their metaphors,

Dr Kate Petheram 21:33

There’s absolutely no reason why they shouldn’t. And again, we should empower patients to you know, I think as a neurologist, it’s probably not my role to be prescribing HRT. But it’s absolutely my role to be talking to patients about it, acknowledging their symptoms has been caused by menopause. And, you know, empowering the GPs to feel confident in prescribing HRT in women with MS.

Dr Jonathan White  21:58

Yeah, I for what it’s worth, I fully agree. Fantastic. Siobhan a couple of things that people will ask me. As you may know, the charity that I work for Overcoming MS is regards or regard to healthy lifestyle, lifestyle modification as a key tenant and managing somebody’s MS. So one of the things I get asked is I don’t necessarily want to take HRT, but is there anything I can take that supplement or dietary wise, is there something I can change that may help my menopause symptoms?

Dr Siobhan Kirk  22:26

For some women there can be lifestyle modifications, you know, stopping smoking, losing weight, improving their diet, increasing exercise, can all help with with menopausal symptoms. Unfortunately, there aren’t any weird and wonderful herbal supplements that have been of any benefits for HRT or for menopausal symptoms, multivitamins, things like that, so they’re not going to help but they’re not going to do any, any harm. Other prescribe herbal medications usually would be antidepressants, which not all women want to take, but some antidepressants can help with flushes and sweats and obviously, mood, or anxiety are a feature that can be beneficial.

Dr Jonathan White  23:14

And what about this concept of bioidentical HRT this is becoming a bit fashionable.

Overcoming MS  23:20

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Dr Jonathan White  23:41

Enlighten us

Dr Siobhan Kirk  23:42

Bioidentical HRT is a money making scam by a lot of non medical or pseudo medical people making up different concoctions blends of estrogen, pergesterone, testosterone and selling it for a fortune comes in different forms drops you put under your tongue sprays, tablets, it’s not recommended by the British Menopause Society itself new proven clinical superiority to other HRT that is available free on the NHS.

Dr Jonathan White  24:19

Okay, thank you that was that was very direct. I appreciate it that actually brings me on to something I think is really good. Want to talk about so there’s a lot of the discussion around MS being autoimmune, it’s generally better in pregnancy as many autoimmune conditions are in a high estrogen state. If estrogen if it’s a primarily female related disease and sort of following my train of thought here, people argue about the role of testosterone perhaps being protective in MS. Less man get it for etc, etc. And then thinking testosterone has become a very in vogue thing with regards to hormone replacement Siobhan and do the two Do you? Is there any commonality between the two? Do you think that they meet in the middle of for example, to somebody with MS. Benefit from testosterone patches? With their HRT, I think is what I’m trying to ask.

Dr Siobhan Kirk  25:11

No, I don’t think there’s any evidence for that Johnny and current thinking on testosterone replacement in women, is there’s not actually a medical condition of testosterone deficiency in women. And most women, if they have their levels checked will have low levels. And there’s no correlation between symptoms and testosterone levels and British Menopause Society just support the use of testosterone postmenopausal link for you have a distressing loss of libido. And they don’t currently support the use of it for any other symptoms, including joint pains, energy, things like that. And there’s no licensed preparation available in the UK. So some women do use it, but it’s the icing on the cake on top of their basic estrogen replacement. And they have to be happy to use it off license.

Dr Jonathan White  26:03

Do you have any thoughts on that one?

Dr Kate Petheram  26:06

No, I think I would just agree that there, we don’t have the evidence. I think you’re right, there is some interest and there are a tiny study of men with relapsing MS treated with testosterone gel. But it was a study of 10 men. So I don’t think we can really draw any conclusions from that. So I would agree that we don’t have any evidence to support the treatment in menopause, outside the current recommendations at this time, like with everything around MS and menopause, I suspect there’s more research to be done. But There isn’t anything more to say on that at the moment.

Dr Jonathan White  26:40

So I think I think that’s fair. It’s but it is definitely a definitely a trend. I again, think this has to do with sort of celebrity advocates. But I’ve noticed a big trend towards asking questions like that, that, you know, I don’t think we have a reasonable evidence based answer for at the moment, but it certainly is not something you should be dipping into for the sake of it would be my own personal view. I think with that, we would probably ask a few questions that our community have sent in if that would be okay for you. And we again, can I think we’re within our rights to say we honestly don’t know the answer to that or keep it as long as brief as you want. But Kate, I think one of the ones that is important to start with be the fact that and Marta Humphries is sent this one in some women I know who are diagnosed after menopause aren’t started on a DMD or DMT. What’s the latest we know about the impact on hormones and menopause treatment, the outcomes, how well they work, those sorts of things. I presume that primarily that question is regarding age and DMT

Dr Kate Petheram 27:38

Yeah, it does make sense. And it’s again, a really difficult question to answer because most of the randomized control trials in for relapsing remitting disease modifying therapies have a cutoff age of 55. So by definition, we don’t really have the the evidence to to know for sure what the effect of you know, menopause and effectiveness of disease modifying therapies are, I suspect we’ll get more from kind of real life and registry based studies, but from a kind of recent, randomized controlled trial we don’t it’s an area which is really under studied.

Dr Jonathan White  28:15

Yeah. Yeah. Fair enough. Thank you. Heat sensitivity, and thermal regulation, I think are two massive, that’s where MS and menopause, I think meet their most evil. I know that I’m particularly I was saying to Kate earlier, I’m particularly heat sensitive in humidity at the moment, and I’m struggling with that a little bit. What do we know about for example, I’m thinking hot flushes, people with MS. Heat sensitivity Kate you know, is that something that concern for people? Yes, I

Dr Kate Petheram 28:51

 I think people can be reassured that that, you know, there isn’t going to be any permanent damage from hot flushes, you know, causing permanent damage. But it may well trigger what is what many people are familiar with the Uhthoff’s phenomenon is one of them and and where people get a temporary worsening of their MS symptoms when they’re hot. So it can be very unpleasant and disabling if you’re getting lots of hot flushes, which again, is another reason to identify it and offer people the people treatments. And there are lifestyle factors, you know, so the importance of cooling air conditioning, where it’s appropriate and available cold drinks, and perhaps other lifestyles smoking cessation and weight loss. When it gets very hot. I have some patients that use some kind of cooling bed. And so the similar kind of similar advice, particularly overnight if people are getting very drenching hot sweats overnight. So yeah, that would be my advice, but it’s not but reassuring. It’s not going to have any kind of damaging long term.

Dr. Jonathan White  29:49

Brilliant. Thank you for that. It’s really helpful. Siobhan. There’s a long question here, but I think we’ve covered lots of it, but I think it’s worth just touching on the role of the Mirena if that’s true Go the marine on us which I see in the world of GYN has revolutionized what we do. Perhaps you could maybe just explain what that is and how that may be a part of HRT.

Dr Siobhan Kirk 30:10

Yeah, Marina is an intrauterine System, also known as a coil releases hormone, progesterone type of progesterone. And what it does is things the lining of the womb, so it tends to make periods if you’re having lighter, shorter and less painful or periods can go away completely. And it’s also a very effective long term method of contraception. And it can be used as a progestogen, a component of HRT I mentioned earlier, you need progestogen, it can still have your womb. So it can actually give you bleed free part of your HRT and the perimenopause, as well as contraception which can be brilliant, and then you just need estrogen only HRT

Dr Jonathan White  30:55

Which, which is perhaps Am I right in thinking one of the most beneficial, least risky in terms of the other potential side effects of HRT if you were taking the transdermal HRT with the Mirena. US that’s a really good way of doing HRT, is that right?

Dr Siobhan Kirk  31:09

Yeah, well tribe transdermal estrogen is thought to be safer than oral there is a very small increased risk of being diagnosed with a blood clots in your legs, your lungs, if you take oral HRT nights as rare as hen’s teeth. And there’s, for the majority of women, there’s nothing wrong with oral HRT. But everybody’s been on the transdermal bandwagon line. That’s what partly why there’s so many shortages of the of the HRT preparations, because everybody wants the same ones

Dr Jonathan White  31:35

Not just Brexit causing that one.

Dr Siobhan Kirk  31:37

No, no, partly partly but it’s it’s supply and demand. So transdermal HRT getting the estrogen in through the skin by patch, gel or spray, there’s no increased risk of blood clots, the over 50s or the increased risk of breast cancer, and it’s thought to be mainly related to the progesterone. With estrogen only HRT there’s very little increased risk of breast cancer. Some studies have actually shown a reduced risk of breast cancer and women on estrogen only HRT. We don’t have any evidence really that Mirena is safer than than other systemic progestogens. But it is a much lower dose, and it can also be useful for some women do get progestogen side effects with their HRT, and Marina can be very useful at minimizing that.

Dr Jonathan White  32:23

And in terms of just to just elaborate slightly progestogen side effects, what would people sort of?

Dr Siobhan Kirk  32:28

Well, if women start HRT, and they’re still having periods, and they only take a progestogen for two weeks, out of four and quite often noticed that they didn’t feel so good. Whenever taken they combined part of the treatment, so it really mimics PMS, and maybe mood not so good. breast tenderness, irritability, and sometimes the night sweats and things come back a bit as well and whenever they’re on the progestogen,

Dr Jonathan White  32:49

But they have to take that if they have a uterus.

Dr Siobhan Kirk  32:52

They have to take it. Yeah, yeah.

Dr Jonathan White  32:55

Okay, there’s a really very long personal question that we’ve been sent in, which is absolutely fascinating. But I know that I know you’ve answered it online that we simply don’t have an answer because it’s so complicated with mast cells and, and really severe hypersensitivity to progesterone. But there’s a really important part: does early menopause before 40 affect the rates of progression of someone’s MS, either for the better or for worse. So premature menopause. And MS. Do we know?

Dr Kate Petheram  33:26

So it’s a really, really good question. And I have sadly short answers that we don’t really know.

Dr Jonathan White  33:31

Yeah, I have to say Yeah. I thought

Dr Kate Petheram  33:37

I know I keep saying I don’t know and I don’t know we need more evidence I think I’ll just show it throw in some good news at this point is that there is research going on so one of my colleagues in London Ruth Dobson is doing is supporting a PhD student at the moment where they are looking at how women with women with MS experienced the menopause and how it impacts having a chronic disease with this. So whilst we don’t have the answers currently we are looking for those answers. And we hopefully you know by interrogating big MS registers like the UK MS register, we will hope to get these answers but we just don’t have them right now.

Dr Jonathan White  34:13

I think that that’s important that we recognize we don’t know but it’s it is reassuring someone living with MS to know that there is just a colossal amount of research going on around the world and within the UK on all sorts of aspects of living with MS. And I feel like reproductive health women’s health is getting that place slowly. You know, family planning pregnancy, all of these things which I know we’re not deliberately going to touch on today. There’s there’s a really big push and I can see that in the research community on that one nice I’m I’m glad to hear that menopause and post reproductive health is getting it too. I want to talk a little bit about the earlier you start HRT the better. Just because you have MS doesn’t mean you should suit or start HRT. But if someone comes into you and says, I’m now in my hypothetically I’m now in my mid 50s and I’ve had OMS for 20 years, but my bladder symptoms are getting much, much worse. And I have a little bit and a half some night flushes, or and all this the sweating and all of those sorts of things. Do you think it’s reasonable to say try HRT and see what it does? Because I feel like they, I feel like there’s going to be a lot of people with MS who are going to have to bridge the gap first and come to their neurologist and say, What do you think about HRT? I know that you would, but I don’t think many would say, Have you thought about HRT as an option? And I’m not saying it’s their responsibility to do so. But, you know, do you know what I mean?

Dr Kate Petheram  35:39

I really don’t, I mean, I do think in some ways it maybe it’s our responsibility to do this. And then again, back to empowering women and so I now look at someone’s, I mean, I always look at someone’s age, but I more consciously look at someone’s age, when they’re kind of with depending on the type of symptoms that they’re coming. But if it’s cognitive, kind of brain fog, and or urine, increasing urinary symptoms, and if they’re aged between the age particularly between the age of 45 and 55, I will say, Well, have you considered hormonal factors and, you know, in, we might have a talk about it, and I’ll say, well, listen up, I think it’s reasonable to go back to your GP and have a discussion about HRT, and that might help some of these other symptoms as well, I don’t promise it’s going to because I can’t tell whether some of those symptoms may be due to their MS. So I would go down a normal kind of MS bladder scan, that kind of route as well. But you know, it’s in a way, this makes me sound lazy, but it’s much easier to treat it as if it were menopause, and maybe give some HRT or whether that’s transdermal or even vaginal, particularly if it’s a urinary symptoms, which can be given really safely. And if people do have a history of breast cancer, then that’s really important. And we had this discussion earlier that I, I think, when I’ve given talks about this, and I’ve had male colleagues say, Oh, this was really interesting, I don’t really think about this. So it is important that we talk about it more, and we, you know, we educate our particularly, I think, I don’t think I’d be unfair in saying this, our male colleagues and to the importance of these, these issues, but it’s also not fair to just offload that onto the female members of the team. And it’s incumbent on male colleagues to, you know, to be comfortable about talking about this. And, you know, we don’t have to know an awful lot, you just need to be aware that that may be an issue, and then being able to say, Well, look, I you know, I’m I don’t I have learned a lot more about HRT and menopause. But, you know, it’s just about saying that, considering it as an option, and then directing people in the right in the right direction.

Dr Jonathan White  37:37

I think that’s very honest, actually  and fair of, you know, to say, to to actually say, well, it’s easier to treat menopause than MS. I think that most people with MS would appreciate hearing that. I know that I certainly would if I were menopausal and had MS. So I wouldn’t be afraid of saying that to anybody. And sounds like what you’re saying is you, you have to be a trial of one. And if it works for you, that’s fantastic. And if it doesn’t, we have to go back to the drawing board. But there’s nothing to be lost and potentially quite a lot to be gained by just having that conversation in the first place.

Dr Siobhan Kirk  38:10

Can I just say about local estrogen,

Dr. Jonathan White  38:14

I suppose that you could Siobhan Yes.

Dr Siobhan Kirk  38:17

Because not not everybody has the other vasomotor symptoms and the other issues or wants or needs systemic HRT vaginal symptoms or what we call urinary syndrome off the menopause can be vaginal dryness can be increased urinary frequency nocturia, run to the toilet at night, increased incontinence, which obviously all can be MS related as well. And vulva discomfort, it’s on the outside as well. And it can be very successfully treated with local vaginal estrogen, which is tablets or creams, gels or rings that can be inserted, and they don’t cure the problem. So they need to be used long term. There’s no point giving somebody a course of three months and expecting them to get on with it for the rest of their life. You know, so I, part of me actually thinks that all women who don’t go on systemic HRT should at least consider using local estrogen, because these other bladder and vaginal symptoms can be a longer term consequence and may not actually start until much later after the menopause.

Dr Jonathan White  39:26

Just yeah, that’s just another thing that people need to be thinking about whenever they I’m a massive fan of using topical estrogen, even for those that say, oh, no, but I’ve got breast cancer and I can very confidently say that’s okay. Yeah, may be the thing that gives you a little bit of relief from your, you know, urgent continence symptoms or vaginal discomfort or whatever that might be. But think about that person who is up 10 times a night to go to the to the bathroom and therefore gets no sleep. And I mean, we all know what that does the average person but for someone living with MS, it’s likely devastating. It’s such a simple thing that could be fixed, or at least improved significantly, and makes such a huge difference. I think. And I think that’s why conversations like these are just so so important.

Dr Siobhan Kirk  40:14

A lot of women are too embarrassed and don’t we’re certainly not going to mention it to the neurologist, you know, they don’t want to mention it to their GP. So it’s not going to be the sort of thing they’re going to mention to their neurologist.

Dr Kate Petheram  40:26

I think some people are really grateful. So I’ve had patients who, you know, when I’ve broached, you know, do you think it could be your hormones? You kind of surprised, I think they thought I think they were mad if they brought it up. Whereas it’s completely opposite. And I think there’s a danger of you don’t want to be blaming everything on the hormones, obviously, and kind of dismissing other symptoms, but recognizing where they may be relevant is our job. And it’s really important.

Dr. Jonathan White  40:57

I couldn’t agree more. Can I thank you very, very much for what I hope has been a useful conversation. I’ve certainly enjoyed it immensely. And I feel like I’ve learned a lot about HRT, and I’ve learned some more software MS too which which I’m very grateful for do you have anything that you any take home message that you want to give to our audience or anything you feel like we haven’t just quite touched on?

Dr Siobhan Kirk  41:21

The best website for information for a woman about menopausal symptoms and HRT would be the woman’s health concern, which is the patient’s arm of the British Medical Society.

Dr Jonathan White  41:33

Thank you very much. That’s fantastic.

Dr Kate Petheram  41:35

So women, if they if they are concerned that their symptoms may be menopausal, to not be afraid about asking their neurologist, but perhaps not expect everybody to be quite as well informed yet we are working on it, but to certainly ask the question, but also empowered to ask their GPs, where I think who have the kind of power to perhaps prescribe the HRT as well. That would be my advice.

Dr Jonathan White  41:59

Brilliant. Well, Kate, Siobhan, thank you so much for joining us. I’m very grateful to you. And I know that our community will be to once they get to hear it. So thank you very, very much.

Overcoming MS  42:17

Thank you for listening to this episode of living well with MS. Please check out this episode’s show notes at overcomingms.org/podcast you’ll find useful links and bonus information there. Have questions or ideas to share? Email us at [email protected] or you can reach out to Geoff on Twitter @GeoffAllix. We’d love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS.