Listen to S5E22: Women’s Heath with Dr. Jonathan White and Professor Helen Rees Leahy
In this episode, we are sharing the highlights from our webinar ‘Women’s Health‘ with Dr. Jonathan White and Professor Helen Reese Leahy. Dr. Jonathan White is an Obstetrician and Gynecologist, and the Overcoming MS Medical Advisor. Helen lives with primary progressive MS and follows the Overcoming MS Program. They discuss how MS impacts women’s health and how the Overcoming MS Program can best support women’s health.
This webinar was recorded as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.
Keep reading for the key episode takeaways and bio information.
00:56 The history of MS research with women (Helen)
08:15 Reproductive health and MS (Jonathan)
26:14 The Overcoming MS Program supports every aspect of women’s health (Helen)
34:51 Hormone replacement therapy (HRT) (Jonathan)
47:41 Bladder issues with MS and menopause (Jonathan and Helen)
“The age group with the highest number of people with MS, both men and women, is now 55-64. So, if you think about [that] within the general MS population, that’s obviously a very large number of women who are either menopausal or postmenopausal. But very, very few women over 50 are recruited for MS research trials. So, the effects of menopause on the lives and health of women with MS, in general, but also our response to DMTs, are very under-researched.”
“‘Inflammageing’ is a fascinating term, which essentially [means] the inflamed pro-inflammatory state that people exhibit as they get older. A lot of the conditions we develop at an older age are actually due to increases in inflammation. Cardiovascular disease would be a prime example of that. We think that ‘Inflammageing’ certainly has a role in this mixed bag of MS and menopause, and of course, the obvious one to look at will be oestrogen deficiency.
There is some evidence to say that it is. But again, none of those studies are prospective or randomised control studies. Generally speaking, it’s not recommended to take HRT just by virtue of having MS to protect yourself. But there’s certainly no reason not to [take it] because you have MS [and menopause] and in fact, it may be beneficial. So, if you are struggling with the hot flushes, the night sweats or your urinary symptoms have suddenly got much worse, you’re suffering from vaginal dryness, then this is definitely a conversation that you should be having.”
“With MS in both males and females, we think up to between 50% and 70% of people will have bladder dysfunction due to MS. That usually affects the nerves supplying the muscle, the detrusor muscle in the bladder wall, and makes it very irritable, so it tends to be an overactive or urge problem with MS. That’s also very common post-menopause, and the mechanism isn’t entirely the same, but it does share a bit, and part of it is certainly to do with oestrogen deficiency.”
Overcoming MS
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. Today’s episode features highlights from the Women’s Health Webinar presented by Dr. Jonathan White and Professor Helen Reese Leahy, recorded live in front of our global audience as part of the finding hope with OMS webinar series. To join us live for the next webinar or to watch the original presentation, head to our website, overcomingms.org.
Professor Helen Rees Leahy
We, I think as women, do experience MS differently, because we experience life differently, as women. So in a nutshell, MS is more common in women. And apparently the proportion of women to men with MS is growing. And we don’t know the reasons for it. And actually, there’s very little MS research, which focuses on questions of gender differentiation. So there’s a lot that we don’t really know about women’s health and MS in general, sometimes, because research studies are quite small. And sometimes they can produce quite contradictory results. And sometimes because the research simply isn’t being done. And I think, arguably, one of the biggest gaps in MS research, with respect to women, at the moment is the relationship between MS and the menopause, which is something we’re going to talk quite a lot about later on. But think of it this way, the age group with the highest number of people with MS, both men and women, is now 55-64. So, if you think about that, within the general MS population, that’s obviously a very large number of women who are either menopausal or postmenopausal. But very, very few women over 50 are recruited for MS research trials. So the effects of menopause, on the lives and health of women with MS in general, but also our response to DMTs are very under researched. I was looking around for some good research that explored the experiences of women with MS. And I found a research group in Sweden, which is doing quite a lot of work in this area, very much by talking to women and questioning them and analyzing their responses to unpack some common themes and issues for women living with MS. And one of the recent research papers this Swedish group produced asked women with MS what was most important to them. And by and large, there was quite a clear consensus among the women. They said that once their basic needs were covered, like you know, having enough money, having somewhere that’s appropriate to live in, and so forth. Once basic needs are covered, the most important things for these women were first of all, having rewarding and self-affirming relationships with others, particularly with family and friends. Secondly, the importance of knowing that our lives with MS have meaning and value. And in practice, they said this meant feeling engaged, challenged, and competent. But they also said that one of the biggest challenges for them was having to prioritize, to manage fatigue, for example, to not do certain things, to give certain things up, which they’ve done in the past. And that this sense of a deficit, the sense of not being able to do as much as they wanted to do or as much as they felt other people expected. This in turn produced feelings of guilt, and also frustration. And thirdly, the women in the study stressed the importance of finding a positive identity or self-identity in relation to their MS. Many of the women commented that having a diagnosis of MS had disrupted their self identity in quite profound ways. Begging the question, what is me? What is my MS? MS is an undeniable part of me, but it’s not all of me. I don’t want to be wholly defined by it. Do I fight it? Do I accept it? How do I describe myself? How do other people perceive me? I suspect many of these sort of themes and questions are actually familiar to very many women. But not surprisingly, following the diagnosis of MS, the researchers found that these themes and questions were accompanied by heightened sense of awareness of vulnerability, anxiety for the future, how their MS might develop in the future, as well as any kind of physical or mental challenges that the women were facing in the present. Recently, some of you may have seen some of these publications yourself. There’s been quite a number of books have been published by women on disparities, gender disparities in healthcare systems. And the broad picture is rather depressingly that compared with men, women tend to wait longer for diagnosis, we’re relatively undertreated, which means for example, we’re less likely to be prescribed the most expensive medications, and often, our accounts of our own symptoms and our experiences can be minimized by medical practitioners, and all of these effects are compounded if you’re a woman of colour, for example, given the prevalence of MS among women, given that we are the majority MS population, you’d really hope this isn’t the case with MS, especially today. But neurology has always been a very male-dominated specialism within medicine, you won’t be surprised to know, but if you didn’t already, that the first doctor to describe MS was a man, Jean-Martin Charcot. And neurology is still a very male dominated medical specialty. Data from the Association of the British Neurologists last year, said that 77% of neurologists are men, and only 23% are women. And the journalist and MS campaigner Rachel Horne, has really been talking about this recently on blogs and on Twitter, for example, raising awareness of gender disparities, particularly for example, in some of the most prestigious MS medical conferences, for example, and she is highlighting this issue with the hashtag #MSsexism. So, I would argue that we have to be really strong advocates for our own best care. In the 1970s, when I was growing up, the women’s health movement taught us how to educate ourselves, to understand and to give voice to our own lived experience, alongside medical knowledge, and support each other to be our own best health advocates. We’ll talk more about this at the end of the presentation, and particularly some of the ways in which Overcoming MS supports both our physical and mental health and well being. Before that, as I said, Jonny is going to talk in quite some detail about specific reproductive issues, reproductive health and MS.
Dr. Jonathan White
What I propose to do everyone is to, in not huge detail, but rather signpost towards some of the big issues that I see in the area of MS and in women’s health. So if we start with fertility, which is the bit that we’re least concerned with, I think that is a completely fair reflection, because MS has no direct effect on female fertility, none whatsoever. Nor do any of the DMTs, if that’s relevant to you, have any impact on your fertility directly. There are some serious issues if you are to become pregnant, but they don’t make you infertile. And there is no need to change any contraceptive by virtue of having MS. You don’t need to change your method of contraception due to the condition and you don’t need to change it due to the fact that you’re taking a DMT, except that for some of them, it does need to be reliable. So it doesn’t affect female fertility. But it certainly can cause sexual dysfunction. So we know that MS is associated with a loss of libido. With vaginal dryness, with inability to achieve orgasm, bladder symptoms, fatigue, spasticity and depression and if you have any one of those things or a combination of them, you’re far less likely to want to have sexual intercourse or indeed be able to. So we can see that any of those things, and all of them are attributable to MS, can wreak havoc with our intimate relations and with our sex lives. It’s important to say that there’s absolutely no evidence for increased risk of miscarriage by virtue of multiple sclerosis. Nor is there any data that would suggest that there’s increased risk of foetal abnormality or stillbirth. So really, MS in a nutshell does not impact fertility. For those who are unfortunately, one of the one in seven couples that do have subfertility and are undergoing IVF. Then there are considerations by having MS. And there isn’t a generalized one size fits all management plan here. But in essence, most IVF regimens either use the short, or the long protocol. And without getting too technical about it, the long protocol is more like a sort of a chemical induced menopause or the long agonist protocol. That is the one mimicking menopause that theoretically and in some studies does increase the risk of relapse. So generally, most people would advocate the shorter or antagonists protocol and it’s probably worthwhile, if you are in the midst of this, or are considering it, bringing that information to your gynecologist, because, I can say this as I am one, they probably won’t know much about this. So it’s your job, as captain of your own ship to take that information to them. And ask them what sort of protocol your IVF is going to involve because you don’t want to be downregulated or essentially in the agonist protocol. So in terms of pre pregnancy counselling, we’ve covered most of this, and there is no effect on fertility. The one thing that comes out in this document is that they very strongly don’t think you should be routinely waiting to start a DMT just because you think you might want to become pregnant. And I do take a bit of issue with that, because that’s a bit one size fits all. And the lesson to be taken from all of this is, there isn’t one. It is completely individual. But there are issues to think about when making that decision. With regards to timing, of course, that’s things like age, how aggressive your MS is, when you were diagnosed, level of disability, the number of children you have or want to have in your future, your partner, all of these things, it is far too complicated to be saying anything, blanket. And what is important to say though, is the pregnancy does not affect your long term disability outcomes. And in fact, in the medium term of the three years after pregnancy, it reduces disability progression. And overall, we know that in a pregnancy year, so nine months of pregnancy three months of postpartum, that the overall relapse rate annually, if you have relapsing MS, is the same. So for the nine months of pregnancy, it reduces significantly, particularly in the third trimester. And unfortunately, postpartum, we know that probably one in four people with MS will have a relapse after pregnancy. But overall, there is no effect. In terms of obstetric management and delivery, you’re not automatically a high risk pregnancy by virtue of MS. And in fact, you can have midwifery led care if that’s what you’d like. And if there are no other medical problems. You can receive prednisolone if you have a relapse, and it is safe for baby to do so, we try to wait through the first trimester, which it would be very common, in most conditions using drugs, we try not to give them during the first trimester but actually there’s no real reason that you couldn’t have them, except there would be a small increased risk of cleft lip and palate in babies, theoretically. Vitamin D, really interesting one, I’m really glad to see that that’s there. But I am always appalled at how low the doses are, so the UK guidance in pregnancy is 400 units to 800 units, that is pitifully too low. We know that doses of up to at least 4000 units are perfectly safe in pregnancy. And in fact, likely much higher and high dose high levels of vitamin D are protective for many things in pregnancy for example, they reduce your risk of recurrent miscarriage. They offer some protection against small babies, early babies, preeclampsia, emergency caesarean section, growth problems, chest problems, MS in future generations, you name it. You won’t be surprised to hear that Helen and I are big fans of vitamin D. And we’d advocate it in pregnancy. MS doesn’t inflate your delivery options, or your painkiller or analgesia options outside of your disability. So for example, if you have very severe spasticity, then it may be useful to have something like diazepam or an epidural during your labour. If you have a lack of sensation or tone, or power in the lower limbs and pelvic area, then you may need assisted delivery. But just by virtue of MS, there isn’t a reason that you have to have a caesarean section. Postpartum, absolutely crucial, support breastfeeding, I’m really pleased to see this is here because we know that exclusive breastfeeding for four to six months reduces your child’s risk of MS by 50% in their lifetime, it’s probably one of the most effective things you could do for baby. It also protects the mum against MS relapses in that postpartum period. And of course, there are numerous benefits from breastfeeding in general. Again, we thought prednisolone isn’t contraindicated if it’s needed, but there is an increased risk of postnatal depression amongst the MS mums and that’s for a variety of reasons but we know that depression and anxiety are twice as common in the MS community than the general population anyway, so it should be watched for very carefully. Copaxone and interferons. Copaxone is licensed in pregnancy and as the only DMT that is, but both are considered safe in pregnancy and there’s no evidence at all of harm to the foetus. If it is stopped it will take 3 months to reach full power again postpartum. And generally speaking, the consensus is that breastfeeding is safe on both of those drugs. Teriflunomide, or Aubagio, if you’re a reproductive age female, is probably a terrible idea to take for MS. Not only is it not especially effective as a DMT, but we know that if someone is taking it, they have a two year washout period, before serum levels reach safe levels, because we know that it is associated with teratogenicity, or abnormalities in animal studies. And it also gets across seminal fluid in the male to the female. If you have an unplanned pregnancy or don’t want to wait two years, there are ways of accelerating that elimination. But it is not a particularly good drug to be on in that phase of life. And also breastfeeding is contraindicated. And the one that I would probably point out to you as being high efficacy and relatively safe in pregnancy is Tysabri or Natalizumab, which is usually reserved for those with highly active MS or a quite aggressive course in MS. There is absolutely no evidence that there’s a specific pattern of birth defects here. And increasingly, it has been continued into the third trimester. So up to 32 to 34 weeks. There’s also very low absorption into breast milk, because it’s a really big molecule and doesn’t really get into breast milk. So it’s probably thought to be safe. And I know that’s not good enough answer, but that’s as good as I can give you today. And the other ones on that slide, you will see that all of them have a varying amount of washout. So for example Fingolimod known to be potentially toxic and can cause abnormalities you need to wait 2 months before you become pregnant. Ocrelizumab is 12 months, Lemtrada or Aletuzemab is 4 months. And Cladribine, this is really, really important to point out, it’s both males and females need to avoid pregnancy for six months, because it affects DNA synthesis, and it is in sperm and semen. All of those medications I’ve mentioned, breastfeeding would be contraindicated. But this is where I would go back to my original point that this needs to be a very individual plan made or again isn’t a one size fits all here. It’s important if you’re planning pregnancy or become pregnant, that you let your MS team know and that your obstetric team or your midwifery team also know that you have MS and that you take one of these medications because the last thing you want to do is to be rushed and forced into a decision that isn’t best for you or baby. So when you can, it’s best to plan it. And I would suggest that if the time comes when you’re with a neurologist, and you’re at an age or time in your life thinking this, that that conversation is brought to the fore and early stage. Moving on to menopause, which of course is the area which most people are interested in. Unfortunately, I would love to be able to show you a UK or worldwide consensus on menopause and MS. Unfortunately, I can’t do it, because it doesn’t exist. But I do want to show you a few things that I think are really important and really helpful. And before we do that, we need to define what menopause is. So it’s defined in medical terms as the absence of periods for more than one year. There are certain caveats to that if you’re under 45. There are different definitions, but generally it’s the absence of menstrual periods for more than 12 months. The average age is 51. In most developed countries, certainly it is between 50 and 52. On average symptoms of perimenopause, those are the symptoms around menopause, that I’m sure many are well versed in which are the hot flushes, the night sweats, the difficulty in concentration, the mood disturbance, irritability, all of those things, on average lasts for four years, but in 10% of people they will last for 10 years or more. And some of those symptoms I’ve mentioned, and others, there’s a significant crossover between MS and those menopausal symptoms. Sleep disturbance is very, very common in menopause and in MS, mood disturbances, anxiety and depression, also extremely common, 50% of people with MS will have a diagnosable mood disorder during the course of their condition. Cognitive issues, the good old MS cog fog, the good old menopause cog fog they both are very similar in ways, in terms of attention, executive functioning, problem solving those sorts of things. And bladder function, extremely common to have bladder disturbance with MS and increasingly common in females after the menopause and with increased number of pregnancies and deliveries. And we can talk about that a little bit more perhaps if there are some questions. There’s really conflicting evidence for reduction in relapse rate after menopause or increasing relapse rate and disability progression. But in a nutshell, I think if I had to summarize it for you, it would be that in general we think the annual relapse rate, so the number of relapses the average person has per year, reduces after the menopause. But the controversial bit is whether or not disability progression increases. There are some studies that say it does. Others say that it will remains rather static. I think the problem is that their studies tend to be small. And they tend to be retrospective. So they aren’t looking forwards. They’re gathering data looking backwards, which medical professionals and scientists tend to not like as much. And they tend to be harder to draw firm conclusions from. Why does it happen? Well, I learned a new term this week, Helen, you might not have heard it, I certainly haven’t heard of this, inflammaging, which is a fascinating term, which essentially, is the pro inflammatory state that people exhibit by virtue of getting older. So a lot of the conditions we develop in older age are actually due to increases in inflammation. So for example, cardiovascular disease would be a prime example of that. And we think that inflammaging certainly has a role in this mixed bag of MS and menopause. And of course, the obvious one to look at will be estrogen deficiency. So we know that in menopause the ovaries are shutting down their sex steroid production, you’ve less estrogen, and MS, generally speaking, is getting worse. And in pregnancy, the reverse happens, so it must be something to do with estrogen. Well, it very likely is. And we’ll touch on HRT in a moment. And there is a document published just within the last six months that is really, really good on this, I read today, The Effects of Menopause and Women in Multiple Sclerosis an Evidence Based Review. And there’s also the less well thought out blog by myself from from a year or so ago. Does Menopause Influence the Course of MS. And if you’d like to have a read of that, that’s on our website, and you’d be very welcome to. So my final bit about HRT. So many people will have heard of HRT, and the question of many people’s lips might be, should I take HRT to help my MS? And I think that’s a really reasonable question to be asking. In short, there is no one definite answer to that question. There is no study that points us firmly in a yes or no. But there are things to consider here. So HRT has got a really bad press from the early 2000s. When the Women’s Health Study and Million Women’s Initiative came out. We think that overnight, almost two thirds of women were taken off their HRT either by their doctors or by themselves out of fear. An entire generation of women have gone through the perimenopause, without that option available to them, which is absolutely terrible, because we know now, having looked at the data much more carefully, and think that generally speaking, HRT is extremely effective at treating the vasomotor symptoms, which is the term we use for things like hot flashes, night sweats, and all sorts of things, and also really good at treating the genital urinary symptoms such as vaginal dryness, urinary frequency, and those sorts of things, very effective, and generally very safe. There is a small increased risk of breast cancer and ovarian cancers, and also of blood clots in the legs and lungs with certain types and preparations of HRT. If 1000 women start HRT at the age of 50. They take it for five years, there’ll be two more cases of breast cancer and one more case of ovarian cancer. The risks in general terms are lower if you start HRT earlier. And if you take it for less time, so the bigger risks in terms of cardiovascular disease and things of that nature are in people who are generally starting HRT in their late 50s, or early 60s and taking it for extended periods of time. But there isn’t a one size fits all again. And it shouldn’t be that you have five years HRT, and then you’re cut off, that’s absolutely not what should happen. It should be a discussion between you and your doctor, which we have regularly. And you should be aware of the risks and benefits and make that decision based on your wishes and your quality of life because it can have a significant increase in your quality of life in particular. Is it beneficial in MS? There is some evidence to say that it is. But again, none of those studies are prospective or randomized control studies. Generally speaking, it’s not recommended to take HRT just by virtue of having MS to protect yourself. But there’s certainly no reason not to because you have MS and in fact, it may be beneficial. So if you are struggling with the hot flushes, the night sweats or your urinary symptoms have suddenly got much worse, you’re suffering from vaginal dryness, then this is definitely a conversation that you should be having. There are alternatives to HRT. So some of the antidepressants for example, Venlafaxine and there’s some evidence that they’re quite good at treating vasomotor symptoms. Clonidine, which is an old blood pressure drug has some evidence for benefit. Topical estrogen. So this is something I prescribed very commonly. An estrogen cream that’s used in the vagina. Easily two to three times a week on an ongoing basis can be excellent if you’re only symptom is vaginal dryness or pain, itching, for example, and that is not systemic HRT. Very, very low and one to get to your bloodstream. It’s OMS. So I’m obviously going to cover natural things and perhaps alternatives and natural HRT Well, isoflavones, for example, like soy or black cohosh, red clover, and then evening primrose, there is some, limited and not particularly good evidence that it is of benefit. But and I would have to say that the bioidentical HRT that often is advertised by pharma companies. There’s very limited data that that’s any more beneficial or any safer than traditional HRT. So it’s as with any alternative, or supplement, it’s all about the type of preparation and where you get it from. That’s a really, really important thing there. Just to point out a couple of references to you, as well, in the UK, the Royal College of Obstetricians and Gynecologists has a really, really helpful Women’s Health Hub, which has some really good information about menopause. The British Menopause Society links in with lots of worldwide organizations, and has some really nice patient information leaflets and advice for professionals. And the Women’s Health Concern has a really, really helpful document about this and some FAQs that I found very, very interesting today. So that’s just I suppose a starter for ten, if you like about women’s health, and all the myriad things that come with it, so I’m going to pass you back to the capable hands of Helen.
Professor Helen Rees Leahy
Thanks, Johnny. And that section was absolutely great. And just to add about the menopause, when I went through the menopause some years ago, now, I didn’t take HRT, partly because I wanted to sort of follow what I thought was a kind of more natural route, partly I think I was at the tail end of that sort of anti HRT, sort of backlash that occurred in the 2000s. But also, and this is the key point, I think, nobody mentioned to me a possible connection between menopause and MS. So one thing I would just say to every woman listening to this tonight, don’t expect your neurologist to raise that connection, be the captain of your own ship, as Jonny says, and raise it yourself, you know, have that conversation on your own terms and kind of take control of it, and see where you go. I mean, the other thing I would simply add is that brilliantly, we know that everything we do in Overcoming MS is also actually completely in line with all the public health guidance for things that we as women ought to be doing. Not only support our health throughout our lives, but particularly, I think with the menopause and also post menopause, when many women and women with MS may be, for example, quite vulnerable to things like osteoporosis. So the amount of vitamin D we take, if we’re doing regular exercise, managing stress reduction, and managing stress, all of those things are actually completely in line with public health messaging, for the things that we should be doing for ourselves. So it’s a real win-win if we’re already doing this as part of following the Overcoming MS program. So just finally, I thought we’d wrap up a little bit by sort of focusing back in on the Overcoming MS program what it can do for us. You know, we are a very female community, 80% of respondents to our recent community engagement survey, were women, which I suppose is in line with those prevalent statistics that Jonny talked about, at the beginning, but perhaps also a reflection of the fact that we as women, how would you put it, I think we’re probably better, we’re more inclined to take up self management programs and think about self care. Let me illustrate that with a just an anecdote. A friend of mine who’s a doctor, a medical doctor working in hospital says that whenever she gives a leaflet to one of her male patients, it might be about stopping smoking or diet or exercise, anything to do with sort of lifestyle. She says 80% of the time, the man gives the leaflet to his female companion, and says this is for you. So you know, we as women are pretty good at picking up on these things, perhaps compared with men. And I just wanted to draw attention to something that I think we all know, those of us who follow the OMS program that it’s more than the sum of its parts and it really supports our mental health as well as our physical health. And another fantastic woman in the OMS space Dr. Rachael Hunter, who is an OMS facilitator and clinical psychologist working at Swansea University. She puts this I think very beautifully in terms of the three P’s: pleasure, purpose and practice. What does she mean by this? She talks about pleasure, what makes me happy? And she says, you know, after a very traumatic event, like a diagnosis of a condition like multiple sclerosis, many people actually turned to question well, you know, what is it that that does make me happy? Where do I want to devote my time and energy and focus now that I have this new context for my life. So finding pleasure in the changes that we make to support our own health has a double effect. It makes those changes, whether it’s following OMS, whatever we do, easier to sustain, and also really increases our sense of agency, of self efficacy, which is exactly what those women in the Swedish survey, were talking about, something that they really wanted to achieve living with MS. Purpose refers to the way in which we can find meaning in our lives, by focusing more on our health, what makes us well, rather than necessarily what makes us ill, connected to a renewed sense of self. Again, an echo of the Swedish study. And this, if we have a purpose in life, if we set goals, meaningful goals that are valuable to us. This is also a great way of reducing stress. And finally, Rachael talks about practice, just the everyday habit forming practice, for example of doing your meditation every day. And any sort of habit forming practice, like doing meditation will also then underpin implementing other good habits, be it to do with diet, exercise, and so forth. But we know there are times in our lives when it’s actually quite difficult to care for ourselves, not least because as women, we are often caring for other people. Women have a higher burden of unpaid care and responsibility than men. And women are much more likely than men to be sandwich carers, i.e. caring for children, and aging parents at the same time. One in four women aged 50 to 64 in the UK, has caring responsibilities for older or disabled family members. So we have quite a big burden of caring, very often in our lives, just the time when we’re going through the kind of changes of perimenopause, menopause, post menopause, which, Jonny was describing. So it’s really worth remembering the benefits of Overcoming MS and that its more than the sum of its parts. And that we can really teach ourselves the skills and positive effects of self care what Rachael calls the three Ps. So I think, final points, Overcoming MS, the program and the charity exists to support everybody with MS. And of course, all women, Jonny’s indicated there’s a wealth of resources. On the OMS website, there are circles where, you know, people can support each other in local or other kinds of groups. We’re developing our advocacy work. If you have a question, anything that we can help you with, please contact the office, please ask a question now. Because we will, we will certainly get back in touch. Since I was a teenager, I’ve always kind of thought of myself as a feminist. And nowadays, you know, I’m a woman living with MS. And I also identify as disabled. And I’m really interested in you know, I know it’s a bit of a buzzword, but this idea of intersectionality, how those different aspects of identity, or what they call horizontal identities, you know, intersect with each other. And the short answer is that it’s made me fearless, I think that if you live with a condition like MS. I’ve got progressive MS. Yes, I have been a bit of a woman in a man’s world career wise, and so forth. I’m sure so many people here tonight, would would identify with with as well. I really feel I live with much less fear in my life than I ever did. As a younger woman, when I was much more concerned about what other people thought about me and how I was going to make a success of my life in terms of, you know, work and relationships and so forth, in you know, in a man’s world. And now I feel I have a way of being in the world, which I feel much more comfortable with than I ever have done in my life up to this point.
Dr. Jonathan White
I think that it is unfortunately still a man’s world. Although I don’t feel like that in the world of MS where I’m outnumbered. So I can I empathize on that score. But I am an ardent feminist because I think what women have to put up with in their lives is often significantly harder than what us men have to put up with. And yeah, I passionately believe in OMS, MS and women’s health. And if I can help any of you on that, I’d be very pleased to do it. Generally speaking the benefits of HRT in terms of MS and also vasomotor symptoms are generally from the estrogen, not the progesterone side of things. And the models of MS and sort of female hormones, sex hormones, focus very much more on estrogen, so I wouldn’t, I wouldn’t be advocating somebody at this stage, depending what it is. There are other medical history, for example, just starting around them transdermal progesterone, and no, I don’t think I would, to be really frank, I think if you want to have the discussion of HRT, the first port of call is your family, doctor, your GP. There are multiple different ways of taking HRT, you know, there’s the good old fashioned tablets, they’re sequential, they’re cyclical. There’s transdermal there’s the patches, there are rings. There are coils there are you name it, there are options available. And it’s a very, it’s a, it’s a fine balancing act, and there’s a bit of trial and error to get the right mix. The one the sort of great brush stroke heading is that if you still have a uterus that you haven’t had a hysterectomy, you need to have estrogen and progesterone to protect the lining of the womb from precancerous changes. If you’ve had a hysterectomy, you don’t need progesterone. And you can just have estrogen. And that’s the probably the best of them if you like, because that’s thing gives you the benefit. And generally it’s the progestogenic bit of it, that causes the side effects feature that people don’t like so much. So, in a nutshell, it’s, there’s no easy answer to that one. Generally speaking, if somebody under the age of 50 has had a hysterectomy and removal of their ovaries, that oophorectomy part of the operation, then they really need HRT to make up for the hormones that they would have had up until the age of 50, when they would have naturally gone through the menopause, because that is protective against cardiovascular disease and later life, osteoporosis, for example. And that would be considered absolutely essential. But it would be protective as well for your MS. Like in a very likely way, given the limited data that we know at the moment. But I think the probably the encouraging thing is that there is much more interest in this field generally in the whole HRT and the post reproductive phase of women’s life generally, but also within the MS sphere. So the answers to those questions hopefully will come, but specifically to somebody under the age of 50, who’s had a hysterectomy and had their ovaries removed, then they need HRT to protect their general health, not just their MS, that it’s extremely common. With MS in both males and females, we think up to between 50% and 70% of people will have bladder dysfunction due to MS. And that’s usually affecting the nerves supplying the muscle, the detrusor muscle in the bladder wall and making it very irritable, so tends to be an overactive or urge problem with MS. That’s also very common post menopause. And the mechanism isn’t entirely the same, but it does share a bit but part of it is certainly to do with estrogen deficiency and if there’s anybody with overactive any females anyway, with postmenopausal with overactive bladder, it is always worth adding in some topical estrogen cream because that can definitely help if the neck of the where the bladder comes into the vagina. If that’s starting to get thin after menopause and weak then strengthening that with some topical estrogen will certainly be helpful and useful. But for some people, they also need specific medications for their bladder or some continence advice and training. They may need some of the medications that we often use to treat overactive bladder conditions or In more severe cases, they sometimes need Botox, botulinum toxin injections into the bladder wall to stop it being overactive. But both can cause that. Absolutely.
Professor Helen Rees Leahy
I mean, in my experience talk to your MS nurse, if you’re in the UK, you know and this is a concern for you because you’re certainly not alone. It’s such a common experience. You know, I think MS nurses often have a lot of great practical advice that they can give so it’s a good first port of call,
Dr. Jonathan White
Really want to echo what Helen said and thank the team for helping set it up and to thank all of you for joining us, for letting a token male gynecologist in on what is often a very private and very difficult areas for us all to talk about.
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Career:
Jonathan went to the University of Glasgow Medical School, graduating in 2008 (MBChB). He completed a further five years of training in Obstetrics and Gynecology and is a member of the Royal College of Obstetricians & Gynecologists (MRCOG). He works at the Causeway Hospital, Coleraine and has a special interest in early pregnancy and recurrent pregnancy loss.
In April 2022, Jonathan was awarded “Doctor of the Year” at the inaugural Northern Ireland Health and Social Care Awards. He contributed to the ‘Overcoming Multiple Sclerosis Handbook: Roadmap to Good Health’, by writing the chapter about medication.
Overcoming MS and personal life:
Jonathan was diagnosed with RRMS in October 2015 and has been following the Overcoming MS Program ever since. Dr. White assists Overcoming MS as a medical advisor and event facilitator.
He lives on the North Coast of Northern Ireland, is married to Jenny and father to Angus and Struan. His interests include the great outdoors, cycling and running (reluctantly), reading, rugby, film and spending time with his family.
MS and Overcoming MS
Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition.
She discovered Overcoming MS in 2008 and has followed the Program ever since. She was previously a Trustee for Overcoming MS.
Personal life and career
Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors.