Podcast: CF and Menopause

Transcript

Voice Over: Hello and welcome to the CFPhysio.com and CF Strong Collaboration podcast series. My name is Jen Hauser. I’m a physiotherapist with almost 20 years experience in cystic fibrosis care and the project lead for CFPhysio.com. Together with CF Strong we have joined forces to bring this to the CF community. Real life insights and personal experiences on all things. Physiotherapy and CF.

CFPhysio.com is a not-for-profit organisation striving to deliver evidence based education in CF physiotherapy management to healthcare workers and individuals impacted by CF. CF Strong is a website designed to inform, educate and empower adults impacted by CF.

We hope you find some value from listening to the podcast we bring to you in this series. Please remember the content is not intended to replace your usual healthcare. Please discuss any concerns or questions you may have with your healthcare team.

Jen: Hello and welcome to another CF strong CF Physio podcast. Today I have two guests joining me in the studio, Nicki, who has a Bachelor of Education and Vocational Education qualifications and has been a teacher for over 20 years teaching preschool to grade 12. She’s currently teaching senior secondary students, in Hobart she has two soccer mad sons and has been married for 24 years to a tragic Collingwood supporter, Nicki’s words, not mine. When not involved in her children’s sports, she likes to spend time in her garden or on other various projects that she would like to have a go at that never seems to have time. To finish, Nicki has CF. She is a bilateral lung transplant recipient and one of the most organised individuals I know in life and also in her own healthcare.

I also have doctor Sue Keating, who is a fellow of the Royal Australian College of General Practitioners, a fellow of the Australian and New Zealand College of Obstetricians and Gynaecologists, has a Bachelor of Medicine, a Bachelor of Surgery and has a Masters in Bioethics. Sue began her career as a GP but wanted to learn more about Women’s Health. She went to specialise in obstetrics and gynaecology and has worked in both the public and private sector. She also works for family Planning Tasmania and in Sues words she has had the privilege of being involved with women with cystic fibrosis as their treating doctor and has been involved in education events delivered by CF Tasmania to the community. She has participated in many fundraisers for raising awareness for CF and Sue’s very personal involvement is she has a much loved God daughter with CF. Full disclosure, as I always do with these podcasts, Nicki is a patient of mine who I have walked alongside as she has traversed a very turbulent at times and joyous at times journey with CF and Sue brought my two beautiful daughters into this world and has been a truly remarkable specialist to me for over a decade, supporting me through a challenging medical condition. So I feel very privileged to have both of these women in the studio, women. I admire women who inspire me and women who are here today to share their experiences, their insights to a topic with little information in the CF literature or resources. Thank you, Nicki and Sue and welcome. Let’s get started.

So I’m just gonna set the scene with the continuing improvements in CF specialist care. The introduction of effective modulator therapy and improved health outcomes. Clinicians and individuals with CF are being faced with new challenges associated with this increase in life expectancy. One of these challenges is navigating Women’s Health, aspects of care increases in prevalence of pregnancy in CF has been seen over the last decade and more so in the last few years with the introduction of effective modulators challenges with consideration of contraception, and navigating interactions with other medications, and with an ageing population, the challenges in addressing menopause. There is a lot to unpack there, and as so often happens with these podcast discussions, we’re most likely going to see we need to have more conversations to cover everything. But today we are going to focus on menopause. So Sue, can you just help us understand what menopause is? I recognise there’s stages before and after menopause and they’ll all be relevant to our discussions today. Over to you, Sue.

Sue: Thanks, Jen. So basically menopause, the word menopause means cessation of periods or the last period. But generally when we’re looking at menopause, we’re looking at a much broader definition of it as being a time of hormonal change for women and for other people who have had periods. Now, we don’t always know when the last period is, when it’s happening. The diagnosis is made in retrospect. And just having it stop your periods is one thing but the main issue to do with menopause are the significant changes in hormone levels that affect the body, both before the periods stop and once they do stop and then in the long term. So it’s easier to talk about that whole period as being a time of change. In fact, in the old days it was called, “Change of life.” Our broader term for it now is perimenopause being the time of hormonal change. When symptoms begin to occur until after periods are finished. So that’s a longish definition to it, but I think we need to have that. To get involved in talking about the complexities of the time for women and for other people, when their periods finish.

Jen: And so on that note, Sue, in terms of because yes, the understanding of that whole time of change and the importance of the hormones cause, I think that’s probably crucial to understanding more about the complexity and how it impacts CF. Is there much in the literature about menopause in CF and do we know if there’s actually differences between individuals with CF to someone who doesn’t have CF and how they might navigate that journey or experience it?

Sue: Sure. Unfortunately, there’s not a lot in the in the literature about cystic fibrosis and menopause. And again, it’s mainly because, as you say, looking back in decades past, women were not living to the time that these changes would occur and now they are, which is a fantastic development, but there are very few studies looking specifically at women with cystic fibrosis and what happens to them around the time of menopause. I think that’s a changing space and hopefully more will be involved in the future. So, a lot of what we’re going to be talking about is extrapolating the research and data for women who don’t have cystic fibrosis in the general community and trying to apply that to women who have also the comorbidity of cystic fibrosis. So there’s one interesting study that with the data was collected in 2000 and 2021 but published this year, which looked at women with cystic fibrosis and their reproductive health, and part of that study looked at women with menopause. As of just an observational study collecting data, and had collected data from 31 women in regard to menopause. And that’s probably our largest study available. To give us some data, but that’s still a very small study. But it had some interesting findings. So what do we know about the differences between that study between women with CF and women without CF in terms of menopause? Menopause tends to occur a little earlier in, in the women with cystic fibrosis. So the average age for menopause in the general community is 50 or 51 in the Australian community. And for women with cystic fibrosis, it’s 46.5 years. So it’s a few years earlier. What else do we know about them? Women with cystic fibrosis are just as likely to get symptoms of menopause as women in the general community. And the other thing that’s interesting about women with cystic fibrosis is that they tend to have had very little information from their care providers about menopause. And that’s despite the fact that almost all of them, when asked, would like more information about menopause. And there’s no reason given for that in that study. But my own speculation on that is that physicians that are looking after women with cystic fibrosis tend to be respiratory physicians who don’t have a lot of confidence in dealing with menopause. And GPs, who mainly look after menopause or family planning doctors don’t have a lot of confidence with cystic fibrosis, so there tends to be a bit of a gap in there of combined knowledge that makes caregivers comfortable with talking to women about this particular part of their life, and that’s a deficit, I think in terms of healthcare and then hopefully podcasts like this and more information being available will help to rectify that.

Jen: Thanks, Sue. And I think that’s actually quite common across the board in reproductive issues, sexual and reproductive health in CF. Contraception was first introduced when anything about sexual health was first introduced and and across the board, the feedback was always I wanted to know more. Earlier it wasn’t brought up in my CF centre and I think things have improved in terms of pregnancy and resources for that because we’ve been forced to, because there’s been such an increased prevalence, but definitely there’s deficits in that area of healthcare for individuals with CF. So I think there’s a lot more there to unpack over. Nicki first, I wouldn’t mind hearing a little bit. You’ve certainly experienced a lot of milestones in your life that have had an impact on your health and particularly your reproductive health. Are you happy just to help set the scene for, for your part of your journey, some of? That information or some of the things you’ve experienced.

Nicki: I think my frustration, certainly in the last 12 months is that like you, I’ve been doing all sorts of reading and there’s a lot of conflicting information out there because we’ll see if they have our fairly substantial gut related issues as well. A lot of the symptoms that I was telling my GP about she was pretty much dismissed as “No, I think that’s more gut issues.” So back to the endocrinologist and to the CF clinic I go and then have further exploration of gastro. Gastroscopy and endoscopy only to find there was absolutely nothing there. But I also understand that having the transplant has also affected, you know, fluid retention and bloating and all those gut related issues, but a lot of the symptoms that you look up with things to do with gut health, with leaky gut and the use of probiotics and prebiotics, the symptoms are so similar to menopause. So I kind of fluctuate between trying to understand what is menopause and what is. What? But I think the bit that’s frustrated me the most is that of all the symptoms of menopause that I do have, the one that I don’t is hot flushes. Not that I’ve noticed any difference when I get those sorts of feelings anyway through medication and insulin related. Symptoms that maybe I haven’t attributed it to hot flushes, but because I don’t categorically get those the GP has dismissed the fact that it is menopause. And suppose my question is, does everybody get hot flushes and I mean, I have spoken to other people who said no, my mother never had them, but whether that’s a genetic thing, I don’t know. But I find that that can’t be the only missing symptom that may indicate that this is the minor issues that I have. So that’s where my frustration lies at the moment.

Jen: So I might get you to answer that question about the hot flushes Sue. That you’ve given birth to, naturally. Also post transplant but also hysterectomy and and I don’t know, Sue, if you’re happy to talk about where all those things might play into that or might not play into that in terms of Nicki’s potential journey of menopause.

Sue: Just to clarify, children were pre-transplant, yes?

Jen: Yes, and hysterectomy was pre transplant.

Sue: That’s right. Well, first of all Nicki’s question, does everyone get hot flushes? And the answer to that is no, it’s around 85% of women will get hot flushes, so most women. Yes, but not everyone. And you certainly don’t have to have hot flushes to have other menopausal symptoms. And that’s the same in the CF group too. So the data from the CF study showed that only 85% of women had hot flashes, not all of them, and only about 60% had night sweats. But all the other symptoms that can go with it, I think are a useful resource. The Australian Menopause Society has a what’s called a modified green scale, which is a table with a list of symptoms that you can basically tick according to 0 you don’t have. Then 1 you have mild. 2 you have more severe and then you can add up what we call a menopause score. And that will then give you more of an idea both of how significant that sort of symptom cluster is for you in terms of menopause and also is quite useful for follow up to see well, am I getting through this, am I getting better? Or if you do go onto some kind of therapy, whether that’s menopausal hormone therapy or some other form of therapy, you can then monitor your symptoms and see whether or not it’s being effective for you. So that’s a that’s a small a short answer. Through it, but yes, all the gut symptoms. Certainly some people do get them. Your situation is a bit more complicated, I think. I think generally that’s true for women with many different kinds of chronic diseases. It’s hard to work out what’s menopause and what’s the disease and what’s a side effect of the therapy that you’re on, all of which can affect general health. But if you’ve noticed a change that’s been distinct from when you had the transplant and went on to those medications and then menopause. Then you’ve noticed the change at that time. It is actually much more likely that menopause is playing a part in it, and the question then arises if it’s a menopausal kind of symptom. Do you look at therapy for that specifically or do you look at general health issues? And ways of improving quality of life. In particular for Nicki, I think you know, Nicki’s obviously done incredibly well over the years. One of the good things about your history, Nicki, is that you know you’re able to conceive to children, carry the pregnancies, have normal delivery. And have done a lot to have as healthy life as possible. And I know you’ve been, you know, fit and active. You’ve done the best with your fitness. You’ve done lots of weight bearing exercises and all of these things are important, particularly in regard to bone health. And I think that one of the biggest problems for women with cystic fibrosis in regard to menopause is what happens to their bones. And women who’ve been very ill with cystic fibrosis in their earlier life will often have had long periods of time where they haven’t had periods at all during that time. That’s what we call hypothalamic amenorrhea. Basically, if someone is very unwell, their brain tells them not to have a baby at that time. So it will turn off all the hormones. And the consequence of that is that periods go away, but another consequence is that they’ll often have fairly look prolonged periods of time with low oestrogen levels and that in itself makes their bones much thinner. They may also have been exposed to medications that can make your bones thinner, so women getting to menopause, women with cystic fibrosis, getting to menopause might be starting from a low bone density. And then if you add in the effects of menopause, that can lead them into much more significant. Health issues. We know that for women without cystic fibrosis, they tend to lose about 1% of their bone density per year for the 1st 10 years after menopause and then lose at a slower rate than if you’re already starting in a low bone density. What we call osteopenia. Yeah. Then you take away 10% of your bone density on that. Then you’re much more likely to have osteoporosis and be facing the risks that go with that of fractures.

Jen: And then I think the other complexity added to that is post-transplant with the immunosuppressive suppressive medications obviously accelerating that bone loss potentially. So another factor to consider for individuals navigating post-transplant and menopause was that idea of making sure management is very proactive, similar to that prepubescent time where certainly from a physio perspective. We’ll be trying to prescribe or encourage lots of weight bearing activity and variety of exercise that will get the muscles pulling on the bone to stimulate that growth. Then in menopause, whether that’s working with dietitian, endocrinology and physio to be making sure again that bone stock is is maintained even if we’re not able to improve it at that point. That at least whatever bone stock that is there is maintaining. And then the obvious in terms of safety. So you know falls risks or activity or in your example, Nicki, when we first get pain in in the foot, maybe that we would look at getting an X-ray straight away because of that increased risk of stress fractures and managing that appropriately. So it doesn’t impact your quality of life. Sue, are you happy to talk about some of the options in for treatment of menopause recognising obviously there is no cure? Menopause, it is just about time and and going through that time of change but treatment wise and whether that’s as you said extrapolating from non CF populate. Or any implications specific for CF.

Sue: Yes. So therapies for menopause in general. Basically you can either look at hormonal therapies, lifestyle therapies or alternative medications. There’s no doubt that menopausal hormone therapy, which also used to be called hormone replacement. Therapy is the most effective treatment in terms of symptom control. So if you’re looking at the symptoms of menopause and the the commonest ones that really disturb people are the hot flashes. But also the insomnia, the brain fog and concentration difficulties, and the aches and pains. So if you look at women overall. Those are the big ones that tend to cause significant effects. On quality of life and to some extent also effects on mood, anxiety, depression symptoms. There’s no doubt that menopause hormone therapy is going to be the most effective thing for those women. Now, menopausal hormone therapy involves replacing oestrogen or using an oestrogen like substance. And if the woman does still have a uterus, we also need to use hormone progesterone. If you use oestrogen alone in women who have an intact uterus. Then you can cause proliferation of the lining of the uterus that can result in bleeding and over time that lining can become abnormal and even go on to a cancer. So for women who still have the uterus, then we need to look at some kind of combination therapy for women who don’t have a uterus and. That’s a lot. A lot more of a straightforward decision in that group. Then you only need to use the oestrogen. The progesterone doesn’t really confer any health benefits or symptom control benefits over oestrogen alone. There are risks that go with oestrogen. Do you want me to talk about those at the moment?

Jen: Yes, so you’re if you’re happy to talk about. The risks and then. Maybe it might come up in the risks anyway, but just for my knowledge. But obviously Nicki here in the studio as well in terms of any interactions, I suppose in that replacement therapy with immunosuppressive medications post transplant or or I suppose. Of the CF medical.

Sue: Yeah. So generally you can use oestrogen in women who’ve had who are on immunosuppressants and you can use it also with some of the modulators.

Jen: And Nicki after? Sue’s chatted a bit about the treatment. Are you happy to just talk a bit more, maybe about  your symptoms cause you were nodding a lot, then when you were hearing some of that stuff that Sue was saying?

Sue: And maybe Jen, a little bit about, you know how you have tried to unpack, work together with endocrinology, gastroenterology, GPs, Because I think that’ll be really helpful for other people to hear that you know.

Nicki: So my main frustration is mood. I seem to find myself either angry all the time or crying all the time and I just feel like I’ve lost so much and now off the back of my teeth and just clenching my teeth and being so cross and not trying to be reacting to things. That probably 12 months ago I just sort of let go, but now they really get under my skin. I don’t generally have insomnia issues. I don’t generally have night sweats. I have in the past, but that’s been related to iron deficiency and other. Things that we could pinpoint medically, as I said. I don’t have. Hot flushes that I’m aware of more than I would normally have on a day to day basis related to medication or other symptoms. But mine in particular is mood related I think, and I suspect that the post COVID isolation may have had something to do with that as well, because we all felt like we were in a bit of a bubble. But I kind of felt that because of the risk to my health and not having had COVID at this point in time. I was avoiding everybody because I didn’t want to get caught because I didn’t know what the outcome was going to be, but since there’s been lots of vaccinations I’ve I feel a lot more comfortable interacting with people now, but I kind of, I know, that I was in a bubble for so long that almost the world sort of left me behind a little bit, if that makes a bit of sense, but it’s more, mood related things. To me that I get completely frustrated with. Because I’ve never felt previously that I am a person whose mood fluctuates all the time. I was fairly even tempered. Not a lot rattled me or I got over it pretty quickly. But now I just, I don’t find that as easy to overcome or combat.

Jen: And I think, yeah, certainly from someone walking alongside you through some of your journey and what you have endured, how stable if I can use that word you have been able to be with some fairly intense emotions and potential for you know, depression, anxiety or mood changes and that’s interesting that you’re able, yeah, to definitely see that. There’s been a line in the sand in terms of, you talked a lot about your gut since early when we were having that discussion there. And because metabolic changes obviously associated with menopause, are you happy to just talk a little bit about, how you’ve tried to navigate that because obviously post-transplant there were changes in terms of your weight compared to pre transplant and then maybe whether there has been a defining change or or? Yeah, how that that’s been impacted in the. Last few years.

Nicki: Yeah, I think that was it was almost a three-pronged attack there. I think certainly post transplant I put on weight but I really needed to, let’s be honest about that. But I also think the fact that I became internal independent post-transplant and the insulin put on what as I had read and understood insulin had put on weight in all sorts of strange places that I had never experienced before. So I think that’s part of it. But then I think I also gained weight based on menopausal reasons as well, so I can’t exactly attributed where it came from. I find that frustrating aspect as well and I’ve had little consultations with dieticians and endocrinologists and things and I know that I have stomach emptying issues. They’ve done the study, they’ve confirmed that. So I know that’s also a factor of bloating as well, but it’s very hard to understand personally, let alone try and relate it to anybody. Or else what is responsible for each of the symptoms that I feel or I can? All I can finally pinpoint is the fact that the mood swing is not related to transplant or the gut health. And that’s probably the only one that I’ve got to finish it.

Jen: And I think it’s that involvement that you’ve had with lots of different caring physicians but trying to put all the pieces together, isn’t it in the puzzle or trying to find? The missing piece which I think there is also then that point, like Sue was saying, it’s managing that quality of life we might not resolve all of the symptoms because you have got so many complexities at play, but being able to find treatments that have an impact on those symptoms. That are really affecting your day to day life and hopefully finding that.

Nicki: But I mean, I suppose I was a bit disappointed with most GP visits regarding this cause I was so frustrated that I just went in and I let it all out. I pulled my eyes out in the consultation and then thinking I was gonna get some answers. I need to be told, “No, I think you need to go back to the endocrinologist. I think it’s gut related.” So then we explored all that. But part of me was just like, let me try something that is related to menopause. If it’s not going to counteract or cause harm to any other medications that I’m on, can I just try it? But that really wasn’t given to me as an option and I that was sort of to increase my frustration, I think. That if we’re not finding answers anywhere else from endocrinology, from diet, from any other source, what’s the harm in trying? And the other aspect too is you know, post hysterectomy then I didn’t realise because my periods had already stopped. I didn’t realise when I was being plunged into menopause. And I’d had the hormone test that showed an elevation. So you tell me. Probably without my knowledge, I started to get all these symptoms that I didn’t understand because I didn’t realise that my periods had stopped because they stopped two years ago, three years ago.

Jen: Yeah, it throws in another complex component to it, doesn’t it? With post hysterectomy, there’s really, you know, other than and I’m assuming Sue you can confirm this for us, but in terms of whether blood tests are helpful to inform a woman where they might be in that process, if they don’t have their uterus anymore and then so yeah, if you’re happy to talk about I suppose that. The treatment options in terms of menstrual menopause, replacement therapy.

Sue: But you can certainly use hormone replacement or menopausal hormone therapy in both of those situations, both with the drugs for cystic fibrosis and after transplants and there’s just a couple of things with it. One in particular is that, we know that post transplants increased risk of cardiovascular disease and high blood pressure and other things that go with all the drugs for immunosuppression in that situation. You’re probably better off with what’s called transdermal oestrogen, rather than tablet forms of oestrogen. The other thing is that there can be some liver impairment both from cystic fibrosis and also from these drugs and oestrogen can make that worse. So it doesn’t mean you can’t use hormone hormones in women who are going through these problems, but you just need to have some special monitoring, for it in the study that has been reported on women with CF, the women that were on hormones actually had a better quality of life than symptom control than the women who are not on them. And generally, unless there’s been specific contraindications. Such as a history of breast cancer or a history of thromboembolic disease, it would be something that could be tried and may give some some resolution of symptoms. I think what Nicki’s talking about would be a common thing, that you know the GP’s are so going to be very nervous about treating anyone with hormones in the complex situation of both the chronic disease and also in the situation of post-transplant. And the doctors that look after that side of her are not going to be comfortable using hormones, and so you’re back to that situation of not having a care provider is going to look at the individual woman and her quality of life and say, look, you know, as long as we do the appropriate monitoring, this is something that can be tried to see if we get a benefit from it.

Jen: I think it highlights the need that an additional member to the multidisciplinary care team of CF individuals with CF is an obstetrician and gynaecologist to assist in navigating through sexual and reproductive health and any pharmacological issues. So and that is definitely showing with the improved health outcomes for people with CF that that multidisciplinary care is having to expand and having to bring more specialists in. But working in a coordinated fashion and respecting each other’s strengths, isn’t it, in terms of their area of expertise.

Sue: Yes, yes. And it doesn’t need to be a gynaecologist as such. Yeah.

Jen: And respecting the individual with CF and listening to their experience, I think is really absolutely paramount in this situation, just in terms of beyond the medication as an option of therapies as you said about that, the lifestyle and and alternative therapies, and lifestyle obviously is a huge factor of just managing CF and post-transplant. So are you happy Nicki as well, after Sue to talk about some of the lifestyle options that we need to be aware of through this time of change.

Sue: Yes. So just talking about some of the more specific symptoms of menopause and what kind of lifestyle interventions can be helpful. I suppose the most important one is for bones in terms of long-term health. And as you were talking about before weight bearing exercise particularly impacting. Exercise. So not just walking, but actually jumping skip. Carrying weights, all of these things can help improve bone strength, muscle strength, and adequate diet in terms of calcium intake is important and generally calcium as part of diet is better than a calcium supplement, although for women who are vegan, very intolerant and who can’t take the food supplements, so things like soy milk that’s been fortified with calcium is as good as cow’s milk. But some women may find soy milk difficult as well. You know, and that group of women may need to look at calcium supplements, but the diet is definitely better from that point of view. Adequate vitamin D, now we’re all very sun safe these days, and particularly if you live in Tasmania like we do, we don’t get a lot of sun. So, considering that and whether or not we can get a bit of sun exposure of 15 minutes a day during the middle part of the day when the sun is best onto our skin, or whether or not we need to look at the vitamin D supplement. And also monitoring of bones. So I think that it’s probably a good idea for any woman to get a baseline bone mineral density study done around the time of menopause. I think that’s particularly important for women with CF or other chronic diseases to know where they’re starting from. And then some monitoring and. Following up with that there are other drugs that can be used should osteoporosis develop, such as the bisphosphonate drugs, and these can be used before fractures occur. So to keep women in in good health as part of their preventative strategy. When it comes to things like hot flushes, you can do some lifestyle things that improve things. So layering clothes, which we’re very good at in Tasmania. So that you can quickly take off the layer if you start to get a hot flush and cool down carrying a small electric fan or even a old fashioned fan to try and help when the flushes occur. Sleeping a bit cooler at night, so having layers of blankets rather than one big foot so that you can. Change how much covering that you’re getting. Avoiding alcohol. Alcohol will often precipitate hot flashes. Avoiding spicy foods that will often precipitate flushes as well. Decreasing caffeine intake. All of these things can help you manage without using any pharmacological methods. And there are other drugs that can be used as well, which we can talk about later in terms of the mood side of things. What can you do that’s not, medication wise? The only thing that’s been really shown to make a lot of difference is cognitive behaviour therapy as part of a group or individual therapy under the guidance of a skilled psychologist has been shown in studies to be beneficial. In terms of both the mood swings and also treatment of things like anxiety, which can be quite a significant problem for women and around the child menopause. Distressing. So trying to organise life so that you have more time for yourself. Time to enjoy yourself. Unfortunately then of course, comes at what we call middle age, where you’re managing teenage children and ageing parents as well. Often you’re at a bit of a career crisis. You’re very busy in your life. And you don’t have the same energy for it all as you used to have, so it’s sometimes hard to unpack. How much is all those other stresses that go at that time of your life, and how much is menopause that’s doing it, but either way, it’s a good time to take some stock, take of what your life is, you know what resources you have or call it the expenditure sheet. You know the ins and outs of energy. So that you can actually try and look at that and be kinder to your self in terms of how you organise your life and that can make a huge difference to how you feel and what happens to your mood. Getting a good amount of sleep is really important. Eating a healthy diet, fresh air, all of these things are important for well being can help stabilise mood.

Jen: Sorry, sorry to interrupt, but obviously we only record the audio of this podcast. But for those who aren’t in the studio as Sue’s talking, I’m watching Nicki’s face because there’s lots of things that she’s saying that are certainly resonating for Nicki at the moment. Exactly at the point in her life. I’m sure Nicki won’t mind me saying, but she is one of yes, the most organised people I know, but I actually think one of the busiest people I know. And so yeah, I’ll let you come in on that, Nicki.

Nicki: Yes, I know some of the things you’re saying. I’ve got calcium down pat, I’ve got the vitamin D. Busy. Yeah, my youngest learns to drive. Oh my goodness. I don’t know what I’m gonna do with myself, but, yes, very busy in our household and we have quite a bit to do with several soccer clubs. So yes, we’re out and about and our weekends are pretty busy. I look forward to summer because there’s no soccer and I can spend a lot more time in my garden and probably my mood does increase quite significantly during those times, because I get to choose what I wanna do when I wake up in the morning rather than what I have to do. I think part of the other side of it is I feel like there’s lots of obligations in this time of life. And you’re right, it’s dealing with teenagers. And demanding parents and things like that where you don’t feel that you’ve got a lot of time for yourself and you don’t prioritise that time for yourself. And I am very ill. Ohh yes. They’re boys.

Jen: I like the reference to the expenditure sheet and I think also changing that maybe to the obligation versus something for you. It’s they’re lessons that we could all probably take forward. I’m sure many listening could do the same. So before I forget, I did remember the question that I had in terms of blood tests. And relevance of blood tests for hormonal levels? Are they helpful to women? Whether hysterectomy or not, in terms of sort of defining where people are at in that time of change, or are they sort of false negatives or other?

Sue: I think that there is a role for blood tests, but it’s fairly limited. One of the difficulties in assessing menopause is that the symptoms tend to begin before the periods stop. So in your 40s usually, sometimes earlier for some women. The hormone levels start to drop and fluctuate a lot, so the ovaries become a bit more resistant to the hormones from the brain that are trying to stimulate them both  to make eggs and also to make oestrogen. And sometimes that increase in the hormone levels there, the hormones called follicle stimulating hormone and luteinizing hormone, which come from the pituitary gland. And so they start to rise, but they’re not consistently reason in that perimenopausal time. They’ll go up and they’ll go down. And sometimes they’ll even inspire the ovary to make a lot of oestrogen for a little. While even though overall during the course of some months the overall oestrogen levels are lower, so women sometimes describe that they actually get symptoms of oestrogen surge, so they get sore breasts before their periods and you think, well if my oestrogen levels are going down, why is that happening? And that’s because the ovaries are getting pushed harder at times by these brain hormones, and so they’ll send out a a surge of oestrogen. Now, if you do a blood test at that stage, it will look like you’re making heaps of oestrogen, but a woman will still be getting hot flushes and other symptoms. And if the woman is in the menopausal age group, you know the time that you’d expect menopause and they’re getting the symptoms of menopause. And I think that scoring it can be quite useful using the modified grain scale then. There’s not a lot of value to doing these blood tests. If a woman’s had a hysterectomy, it can sometimes help you if you’re thinking, well, is it due to menopause or is it due to something else? And if you do a hormone level and it shows the oestrogen levels or low and the brain stimulating the hormones, the follicle stimulating hormone is high on more than one occasion. And you can say, well, you know, menopause is definitely happened, you know. And if that woman still had a uterus and had periods, we would have seen those periods stop. So it can be helpful in a limited role. The time when I find it really helpful is if periods go away in. A woman under 40 and I’m wanting to know, is this menopause coming on prematurely? Because that group of people are going to really need to seriously consider hormones as part of their treatment. Then doing the hormones at that level can be useful and will show you whether or not it is menopause or whether something else is going on such as thyroid disease or maybe their brain hormones have turned off for some other reason. So not an answer to the question, but at times all my levels are helpful. But often than not, and you’re much more likely to use symptoms as a guide to whether or not I need to look at some therapy.

Nicki: Because I suspect that’s what happened with me. But the time that it was tested may have been particularly low or had experiencing a dip, but then I didn’t start to experience what I now still think, yeah, with menopausal symptoms, probably for another four or five months after that.

Sue: Yes. Yeah. Umm and sometimes it’s a retrospective thing. You know, a woman, a periods. Finally stop and then you look back and say, ah, the symptoms she’s been having for the last five years, they were probably menopause.

Jen: Yeah. So true about a lot of things with our reproductive health where, you know, post our horrible mood and we then get our period we go ohh. That’s why we were in such for the last three days. So hindsight’s a wonderful thing.

Sue: But anyway, if you look at the Australian Menopause Society website then that can be very helpful and they they have pamphlets with the menopause symptoms scale on them.

Jen: So we’ll make sure we include that for people listening if they wanna go and have a look at them as resources, but I think so much in CF. If you can do a symptom scale at one point and then at another point, whether that’s in looking at response to treatment or whether that’s looking at progression of disease or progression of time of change and menopause. Because then it’s helpful having a validated scale to be able to record and reflect on that. Sue, I’m mindful of time and listeners for today’s podcast, is there anything else that you would really like to share with people listening, whether that’s a healthcare professional trying to support a person with CF navigating? Or a person with CF trying to navigate?

Sue: There’s just a couple of things I’d like to talk about in general, in regard to menopause. The 1st is we’ve talked, we’ve been talking about the benefits of treatments, but we also need to talk about the risks of treatments. And I think this is particularly true for women who’ve had transplant. And who are on immunosuppressants? One of the risks of menopausal hormone therapy, and one that’s really pertinent in the media, is the risk of breast cancer from the therapy itself. And we also know that anyone who’s had a transplant who is on immunosuppressants has an increased risk of cancer overall, and I’m sure you know, without causing fear, that would be something on the mind of any woman who’s been through what Nicki’s been through and just a bit of data on that. So in terms of the risk of breast cancer for women who have a uterus who are on combined oestrogen and progesterone therapy, there is a small increase in risk of breast cancer. If you’re on that therapy for more than five years and the risk tends to then drop down if you come off the therapy after. Harsh for women who’ve had a hysterectomy and who are on oestrogen only if they go on to menopausal hormone therapy. If the risk is really, really insignificant in terms of breast cancer risk, the data. This is data from general population. There’s only three cases. 100,000 women. If you’re on oestrogen alone over a five year period. So one in eight women will experience breast cancer in their life. And fortunately, with early diagnosis and therapy, most women are going to survive that. So over 90% of women will survive their breast cancer. They are the group that we really can’t use oestrogen in and we need to look at other ways of treating their symptoms. And any woman who is thinking about going onto menopausal hormone therapy should really have an assessment. Have a a good review with their doctor, have a mammogram, breast examination and an assessment of their risk factors in terms of their family history before considering any kind of therapy. And then have their mammograms every two years after that. The other big risk group is the risk of thromboembolic disease, and that tends to be a lot lower if you’re using transdermal oestrogen. So there’s certainly a big move towards as much as possible, all women using transdermal oestrogen, so either a patch or a gel or a cream that you rub in and these certainly have a much lower risk of thromboembolic disease. Taking it down not much more than the background, right? In women who are on an oral form, it is basically doubled. There’s still a low number in the low risk group, but women who are on immunosuppressants, they’re not a low risk group in terms of thromboembolic disease and they should seriously consider going onto transdermal therapy. So I think that it’s important for women to know these risks, the other risks, if you want it for a long period of time into your 60s, then there is an increased risk of stroke that tends to accumulate over time, and there’s very conflicting evidence in return of things like cognitive function and dementia hormone replacement. Or menopausal hormone therapy tends to improve cognitive function when you’re looking at menopausal type symptoms. With cognitive decline, memory disturbance, and brain fog. But we don’t know in the very long term, if women are taking it into their 60s, whether or not it does increase the risk of things like dementia, and there’s very conflicting results from the studies at the moment in that regard.

Jen: That’s fantastic. Thank you, Sue. You’re a wealth of knowledge. We really appreciate it. And, Nicki, have you got anything you would like to share before we get close to wrapping up?

Nicki: I think knowing the risks is a really valuable thing because you want to be informed about the decisions that you make about your body. And then I think it’s probably a case of weighing up. Is it, once you’ve done all the cheques and balances and made sure that this may be worth be worth a try, that you don’t just start taking it and then that’s it. And monitor whether the difference outweighs the potential risks long term, or whether you just need to be trying a treatment for a short amount of time because it’s the part of your life that you’re in when you’re so busy and so you can all over the place that whether this is what you just need to get you through, maybe even two or three years and then you can potentially. Scale that back and but always with the. With the knowledge that that there may be some long term effects here that you. Like to consider.

Jen: I think that is really important, and I think from the mood disturbance perspective, the sleep disturbance is the brain fog. All of those symptoms obviously impact your quality of life, but they’re also gonna impact your ability to manage a chronic disease, which you are still managing despite a transplant and that all then has its impacts as well. So I think taking that all into consideration, and making a decision for treatment options and how you navigate this period of change. As we said in the beginning, there’s not a lot of research and there’s not a lot of resources at the moment, but I think generally, for people experiencing periods or going through menopause, it’s again always that elephant in the room, isn’t it, that no one feels like bringing up at the dinner party and we don’t talk about it openly enough, and I think certainly from my personal experience, and I’m gonna make sure that my girls know we can talk about periods and how much is normal and how much isn’t normal and how many days should a period be. I just, I thank you both for being here today and talking about this topic. And, and let’s hope that we can keep shining the light on it and make people feel comfortable about sharing their experiences and comfortable about sharing knowledge on the topic. It has to help in the long run.

Nicki: Yes, absolutely. Couldn’t agree more.

Jen: Final words Sue.

Sue: This is a whole other topic, I think the big thing for women with cystic fibrosis and the question that they’ll always want to ask is, will some kind of therapy for menopause improve lung function? And we know that lung function does deteriorate after menopause in the general population. We don’t have hardly any data on what happens to women with cystic fibrosis, with menopause and their lung function, and we don’t have any data on whether or not menopausal hormonal therapy improves it. Apart from that very small study and I think there was only 10 patients on hormone therapy in that very small study. And I think that in that group they did not see any deterioration in their lung function. But that’s a very small study. And that’s where research needs to go, because I think that if you could say to women, it’s not going to make any difference to your lung function to go on to hormones, then all the other considerations might push people away from it. But if you said, look, it’s gonna actually preserve your lung function, everyone’s gonna want to be on it.

Nicki: Everybody.

Sue: Everybody. So I think that’s a research potential and it would be really quite, quite good in general society, and for women who are going through Menopause and actually. I don’t know whether that’s something that you could look at, Jen.

Jen: I think that it has to happen, it’s that situation with CF across the board and and we’re seeing it now with effective modulators, is it has to be collaborative that has to be multi centre so that we can get our numbers and we can actually start to extrapolate some meaningful data. From it, and that the impact on lung function and hormones is a really fascinating area and I know there’s been some research done in the past, but there’s more happening now. I believe in the UK and really looking at the role those hormones might play both on lung function but also infective exacerbations and and you’ll hear anecdotally. Females with CF will comment that at certain periods of time in their menstrual cycle that they notice flare ups with their respiratory symptoms and there’s definitely some involvement there.

Nicki: And I was just like when I was pregnant with Jacob, which was over 20 years ago now. There was there was a huge concern that my lung function would be adversely affected quite a bit and that you know, there could be a fairly disastrous outcome, but in actual fact my lung function went really, really steady. I think I had one exacerbation during that time. That was sort of in the first trimester and they put me on some very safe oral antibiotics and we got through that. But generally speaking, my lung function improved. Probably not so much with the 2nd pregnancy, which was five years later, but certainly with the first one, definitely. So whether there’s something in there, who knows.

Sue: It would be interesting to know, did it go downhill in the post-natal?

Nicki: No, no, I didn’t have very good sleep. I think because I had to be hyper focused on my own health to get to the finish line, so to speak, but generally speaking I found it easier breathing wise, certainly not as you come to term, because there’s not much room for the lungs to expand.

Sue: Yeah, it’s interesting that too with other inflammatory conditions that they’re often much improved during pregnancy and then post, normally they go down. The other thing is that I think more we know about periods, the more we know that periods are an inflammatory process and that they tend to exacerbate any other inflammatory process when they’re happening. So we know that rheumatoid arthritis symptoms. Get worse. Asthma gets worse during periods. It would stand to reason that cystic fibrosis symptoms would get worse during your period and whether that’s effective hormone change or whether it’s an effective release of inflammatory chemicals around the. Time of your period. There’s the stuff. That we don’t know at the moment.

Jen: Yeah, lots. Lots of future research needed. And yeah, more discussions I think for us in the studio. I will wrap it up if you guys are happy with that for today. But I really would like to thank both of you for being here today for your honesty, for your knowledge and for your experience as shared. It’s certainly the feedback we get from the CF community and healthcare professionals. They really appreciate these. These podcasts, and so hopefully we can continue to do more so for today. Thank you very much, Nicki. Thank you very much, Sue. We hope you have enjoyed listening to this podcast. Thank you to be a strong for their support and collaboration on the series. You can find this podcast and more on CFPhysio.com, CFStrong and your favourite podcast platform.