Menopause & PH - End user draft

The early signs of menopause can be very variable. Some people may have no signs at all. But things that may have been just put down to age before - such as loss of concentration, forgetfulness, and trouble sleeping - are now increasingly being recognised as perhaps being signs of early menopause. I think this increase in recognition and understanding is making it easier for people to access support but there is still a bit of stigma around it all, and a sense of ‘just getting on with it’.

Dr Karen Selby

A Consultant Obstetrician and Gynaecologist

who works closely with the Sheffield Pulmonary Vascular Disease Unit, a specialist PH treatment centre.

PH can be challenging enough with day-to-day living. And when you add in the menopause symptoms - like broken sleep, hot flushes and ‘brain fog’ - the whole thing can become exhausting. Menopause is an important part of a woman’s life and it’s vital that we recognise the impact it can have.

Sian Richardson is a PHA UK Support Nurse and former Clinical Nurse Specialist in PH

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Why menopause matters

It’s hard to say whether the perimenopause itself has negatively impacted my PH symptoms as some of the symptoms, especially the fatigue, are the same for both.

Gail, living with idiopathic PAH

Why menopause matters

In simple terms, menopause is when a woman stops having periods and is no longer able to get pregnant naturally. The process itself though can be complex, and just like pulmonary hypertension, it can affect people very differently.

A natural part of ageing, the menopause (sometimes referred to as ‘the change’) normally starts when a woman is aged between around 45 and 55 – but this can vary either side. It is caused by a change in the balance of the body’s sex hormones, when your ovaries stop producing as much oestrogen and stop releasing an egg each month.

If you’re reading this whilst going through menopause, you probably don’t need to be told that symptoms can have a significant impact on your life. Women commonly experience hot flushes, night sweats, difficult sleeping, vaginal dryness, low mood or anxiety, reduced libido, heart palpitations, or problems with memory or concentration.

You might already be experiencing some of these symptoms because of your PH, which can make it harder

to identify if you are starting to enter menopause – but a simple blood test, available with your GP, can provide the answer.

If you are struggling with menopausal symptoms alongside your pulmonary hypertension, do not be afraid to ask for help.

The average age for a woman to reach menopause is 51, but around 1% of women experience it before the age of 40. If you are experiencing menopausal symptoms under the age of 45, please see your GP, who will be able to run a blood test to confirm your hormone levels.

Source: nhs.uk

Symptoms can begin a long time (even years) before your periods stop, and this is known as ‘perimenopause’.

Symptoms then continue, on average, for around four years – although some women experience them for much longer.

I found the symptoms of perimenopause were much worse than the actual menopause itself

Kim, living with PAH

Symptoms of menopause can be managed in several ways, including:

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Hormone replacement therapy (HRT)

Consultant Pharmacist

Neil Hamilton explains more in section 2

HRT treatments are either a combination of oestrogen and progesterone, oestrogen / progesterone alone, or a medicine called tibolone. Interaction between oestrogen and PH is not fully understood, and it is not suitable for those with certain types of PH.

Oestrogen creams, lubricants or moisturisers

These can all help with vaginal dryness (which can also be a cause of painful sex during menopause).

Cognitive behavioural therapy (CBT)

This is a type of talking therapy that can be helpful in managing low mood and anxiety.

See section 3 for details of a self-help programme specifically to help people with PH manage anxiety.

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Lifestyle modifications

Regular exercise (within your capabilities) and eating a healthy balanced diet can improve some menopausal symptoms.

See section 4 for advice on eating well during menopause.

Wear light clothing

Avoid potential triggers, such as spicy food, caffeine, smoking and alcohol

Keep your bedroom cool at night

Take a cool shower, use a fan or have a cold drink

Try to reduce your stress levels

Source: nhs.uk

Hot flushes and night sweats can be frustrating and make some PH symptoms feel worse. The following measures can help you to cool down:

With a lot of gynaecological symptoms that women have, whether it’s menopause, incontinence, or heavy periods, they are still seen by many as ‘just part of being a woman’. It’s only recently that women are starting to think ‘hang on a minute, why should l put up with this?’ The help is there; as women we just need to ask for it.

Meera Bhogal, a wellbeing coach who runs guided menopause programmes and is passionate about raising awareness of menopause within South Asian communities.

and me Menopause

Gail, 55, has idiopathic pulmonary arterial hypertension and has been living with menopause symptoms for around three years.

“I am classed a perimenopausal as I still have a monthly cycle. My symptoms include night sweats, hot flushes, disturbed sleep, dry vagina, bladder weakness and a low sex drive. I also get very moody and snappy, which is an increase from my normal PMT [pre-menstrual tension].

These symptoms have affected my relationship with my husband, and this became more apparent during the pandemic as we were together 24/7.

I decided to speak with my PH team, and they supported me to talk through my options with my GP. He was happy to get me started on treatment after the meds were approved by my PH team.

We opted for a pessary to help with the bladder weakness and dryness, and that has helped significantly. I was also prescribed a low dose antidepressant, which works by increasing the levels of serotonin (mood enhancing chemicals) in my brain. My GP advised that it has been successfully used to reduce the psychological lows and moodiness linked with perimenopasue and menopause, and it has worked for me.

I am pleased with the results so far but have decided now to try HRT to reduce the symptoms further (night sweats, itchy skin, restless sleep, mood swings and so on.) I start two HRT medications this month; all have been approved by my PH team and I will have my blood pressure monitored monthly by my GP.

It’s hard to say whether the perimenopause itself has negatively impacted my PH symptoms as some of the symptoms, especially the fatigue, are the same for both.

I know some women sail through the menopause. The trouble for me was because I have IPAH and am on IV therapy, the added symptoms from the perimenopause were pushing me into a place where I could not be my normal positive and proactive self. It was pulling me down and it was becoming too much, so reaching out to my GP has meant I have had the medical help I needed. I am feeling much more positive about the whole thing now.

I feel this subject is very important and not taken seriously. Many women do nothing about it when they suffer for many months and years.”

and me Menopause

Tara was diagnosed with PH in 2017 and found it hard to distinguish between symptoms of her illness and symptoms of menopause.

“My periods stopped in 2015, at the same time my husband left, and I took it badly as he was my best friend. When my periods stopped, I at first thought it was due to my depression.

I’d been ill for a long time and I did have hot flushes a lot but we all used to say it was my medication, as I have chronic pain and take morphine and a cocktail of pills. I was finally diagnosed with PH in 2017 but no medical specialists have mentioned menopause to me.

I wonder if some of the pills I was taking [for my illnesses] helped me through menopause, as I realise I’ve been lucky. I’m now 54 and I’m not sure if I’ve finished menopause or not, but I feel like I’ve sailed through it.”

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Hormone Replacement Therapy (HRT) and PH

As most of my close friends are of the same age, we all share stories and advice about menopause, and support each other.

Zoe, living with idiopathic PAH

Hormone Replacement Therapy (HRT) and PH

In November 2015, the National Institute for Health and Care Excellence (NICE) published a guideline (recommendations) for the use of HRT. You can find this by typing NICE guideline 23: menopause into an online search engine.

The guideline summarises very nicely the evidence for prescribing HRT along with a clear explanation of the risks and benefits. As with all NICE guidance, this was reviewed more recently in 2019 to ensure their advice remains up to date. The menopause will affect all women at some point in their lives. Approximately 80% of women experience some level of symptoms and current evidence shows that for some women these symptoms may last as long as 10-12 years. For some, the impact on their quality of life is huge. The symptoms of menopause can obviously affect all aspects of home, family, work and sex life. Hence this is a very significant

problem to tackle and one of the key messages of the guideline is for women to seek advice from their GP in the first instance and receive the most appropriate treatment. For women with pulmonary hypertension, the situation is further complicated. HRT treatments are either a combination of oestrogen and progesterone, oestrogen alone or a medicine called tibolone (more commonly started by hospital specialists if other options are not suitable or have not worked). Progesterone alone, is not prescribed to treat menopausal symptoms, but it is used as protection for the lining of the womb (either as part of a ‘combined’ HRT, via Mirena-IUS or as a progestogen capsule).

In addition to the range of medication contents, there are also different ways that HRT is given.

HRT tablets used to be the most prescribed form, but the skin patches and gels are now preferred for most patients. The skin patches are easy to

This chapter has been written by Dr Neil Hamilton , Consultant Pharmacist at the Sheffield Pulmonary Vascular Disease Unit – one of the UK’s specialist PH centres.

use; they are replaced every few days, slowly releasing medicine which is absorbed through the skin. Gels are increasingly popular as they are so convenient; simply rub the correct amount onto the skin every day. It is worth bearing in mind that if any patient prescribed an oestrogen-only gel or patch has not either had a hysterectomy or has a Mirena coil in place, the doctor will also prescribe a progesterone tablet to reduce the risk of womb cancer.

The 2015 NICE guideline mentioned earlier has answered some long-standing concerns and clearly described the pros and cons of treatment. However, as with other chronic conditions, the interaction between oestrogen and PH is not fully understood.

Firstly, there are valid reasons why oestrogen may be beneficial, not least because it has a protective effect on the bones (it protects against osteoporosis). It can also provide relief from the flushes and psychological issues such as mood-swings. However, oestrogens also have pro-thrombotic properties (meaning they increase the risk of blood clots). This will have a varying degree of importance depending on the type of PH that you have.

For example, if you have chronic thromboembolic pulmonary hypertension (CTEPH), any increase in the chance of having further clots could be life-threatening. As a result of the higher risk of clots, oral HRT is not recommended as a first choice anymore. Therefore, patients with PH

would be offered the patches as a good option. There is a lot of research work underway looking at all aspects of oestrogen in PH. Such work includes looking at whether oestrogen may cause PH, whether high levels may be involved in making a diagnosis of PH more likely, and even whether treatment with oestrogen-like compounds could be beneficial. If the investigators are able to draw some useful conclusions from their work, the picture may be clearer. However, at the moment the evidence for taking oestrogens in any form remains very conflicting.

The NICE guideline does a great job of raising the importance of appropriate management of menopausal symptoms. It goes a long way to clarifying and describing the long-term risks of taking HRT, which will allay some commonly held misconceptions. The 2019 review brought this up to date by looking at more recent studies to see if the advice concerning risks of long-term complications such as heart disease, stroke, diabetes, osteoporosis, different cancers and blood clots needed to be changed.

Interestingly, the best new evidence was often mixed; either showing that HRT did not increase the risk of long-term problems or was shown to have the effects that were already described. As such, the review did not change the 2015 guidelines, so their recommendations remain in place.

In summary...

“HRT offers an effective treatment for menopausal symptoms. HRT patches or gel do not appear to be associated with an increased risk of blood clots and may provide an attractive route of administration for patients with PH. If you think you are suffering from symptoms which may be related to the menopause then it would be sensible to discuss with your GP who can fully assess whether HRT is the correct treatment for you. Your specialist centre will be happy to give your GP advice if needed.”

Dr Neil Hamilton, Consultant Pharmacist

and me Menopause

Zoe is 49 and was diagnosed with idiopathic PAH just over three years ago. She has recently gone through tests to confirm the start of perimenopause.

“Around 18 months ago, my already painful periods became worse. This was at the same time that I started taking selexipag [for my PH], so I assumed it was medication related. I didn’t realise it was linked to the onset of early menopause.

This progressively worsened to the point where I experienced blood clots for two consecutive months and the frequency of my periods increased to every other week. The pain was making me physically sick and once, whilst driving, I had to pull over to lay on the back seat for half an hour.

I recently had my bloods tested by my GP who confirmed that the results indicate that I am perimenopausal. I feel relieved as I can now move forward and hopefully gain the appropriate help.

I do feel disappointed too as I have yet another medical condition that will hinder me getting on and achieving what I would like to. My experience of PAH in the workplace is one of lack of support and understanding, so I would be reluctant to mention another medical condition that may impact my work.

As most of my close friends are of the same age, we all share stories and advice about menopause, and support each other.

My advice to others would be don’t wait as long as I did to seek help. Talk to others on private Facebook groups [see section 5 for details of one specifically for women with PAH]. Never suffer alone.”

DID YOU KNOW..?

If you live in England, you can access a scheme that gives you a year’s worth of HRT for the cost of two single prescription charges.

The special prepayment certificate (PPC) can be used as many times as needed over a 12-month period, and it can be used against an unlimited number of HRT items including patches, tablets, and topical preparations.

You can purchase the PPC online by scanning the QR code or visiting www.bit.ly/PPCforHRT

It can also be bought in-person at some pharmacies.

Mental wellbeing and menopause 3 3

It is a myth that menopause only impacts you physically, as it can also affect your mental health. Menopause can be associated with feelings of anxiety, low mood and anger. It can also impact your sleeping, concentration and memory.

It is important that you speak to others if you are experiencing problems with your mental health during menopause. There are interventions that can help. For example, cognitive behavioural therapy, or CBT for short, is a form of a psychological intervention that is recommended to help alleviate low mood and anxiety associated with menopause.”

Dr Gregg Harry Rawlings Clinical Psychologist

Dr Rawlings is the author of a self-help programme specifically for people with pulmonary hypertension who struggle with anxiety. See page 2 of this chapter for details.

Mental wellbeing and menopause

Research conducted by ourselves here at the PHA UK* has shown that 53 % of people with PH have experienced or been diagnosed with anxiety or depression - and going through menopause can make these symptoms worse.

Changes in your hormones can impact many aspects of mental wellbeing, and menopausal symptoms may include:

Forgetfulness

Loss of confidence

Poor concentration, often described as ‘brain fog’ and/or lost words

Difficulty sleeping (which can then make your irritability or anxiety worse)

Loss of self-esteem

Anger and irritability

Anxiety

*The emotional impact of PH, survey conducted 2019

Low mood and feelings of sadness or depression

You may recognise some of the symptoms listed above as symptoms that are associated with PH too.

It’s really important to seek help if you are struggling with your mental wellbeing during menopause. Speak to your GP, and if you feel able to, let your family and friends know how you are feeling.

Help to overcome worry and anxiety during menopause

At the PHA UK we have developed, with psychologists, a four-week self-help programme specifically for people with pulmonary hypertension who are struggling with anxiety. The programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) and is available completely free of charge. When the programme was tested with people with PH as part of a controlled study, 100 % of those who took part said it helped them with their anxiety.

Find out more or order the programme by scanning the code below or visiting www.bit.ly/OvercomingWorryAndAnxiety

Supportive organisations

Mind offers information and support for people with all types of mental health challenges.

www.mind.org.uk

Infoline: 0300 123 3393

Anxiety UK is a charity for those with anxiety, stress or anxiety-based depression.

www.anxietyuk.org.uk

Helpline: 03444 775 774

My Black Dog is a peer-to-peer online chat service that supports people who are struggling with their mental health.

www.myblackdog.co

Samaritans provides support to anyone in emotional distress, particularly those at crisis point.

www.samaritans.org

24-hour helpline: 116 123

and me Menopause

Rebecca has Chronic Thromboembolic Pulmonary Hypertension (CTEPH), and although she has already gone through menopause, she lives with constant menopausal symptoms due to medication for breast cancer.

“I suffered more with breathlessness during my menopause and still suffer breathlessness once a month, which is quite weird. The change in bleeding made me anaemic as it was so erratic. Due to my blood clot risk, there was no help for me at all. My doctor said it won’t last forever and I would ‘get over it’.

It wasn’t until afterwards that help was offered for me by way of anti-depressants, but it was too late, the worst was over.

Unfortunately, during my menopause, I was diagnosed with breast cancer. I now struggle with constant menopause symptoms due to the medication I have to take as maintenance for my breast cancer.

I have found hand-held fans helpful for the hot flushes, especially at night, as the little battery ones can be quite forceful and take the breath away. Cotton sheets and natural fibre clothing really help too.

Ask for help if you need it. Mood swings can be tough to deal with and there is help available, but it might not be offered – so you need to ask. You don’t need to suffer.”

Sue, has PAH and connective tissue disease and is in the early stages of menopause.

I feel extremely drained and emotionally unbalanced, which is causing me to get anxious, irritable and upset – sometimes suddenly and for seemingly no good reason.

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Nutrition and menopause

When my periods stopped, at first I thought it was due to my depression. Tara, living with PH

Nutrition and menopause

Alongside lifestyle adjustments, paying attention to your nutritional needs is crucial during perimenopause and menopause. By adopting a balanced and thoughtful approach to your diet, you can support your overall health and manage menopausal symptoms more effectively.

This section outlines the main nutritional considerations during menopause, providing useful tips and insights to help you navigate this transformative stage with confidence.

Calcium: Building strong bones

As oestrogen levels decline during menopause, women become more susceptible to osteoporosis, a condition characterised by weakened bones. Calcium intake takes centre stage in maintaining bone health. Incorporate calcium-rich foods like dairy products, leafy green vegetables, and fortified

plant-based milks into your diet. If you’re unsure about how to maintain a healthy dose, you can consult a healthcare professional about calcium supplements to ensure you meet the recommended daily intake. By prioritising calcium, you can strengthen your bones and reduce the risk of fractures and osteoporosis-related complications.

Vitamin D: Sunshine vitamin for bone health

Vitamin D works in tandem with calcium, enhancing its absorption and supporting bone health. However, reduced sunlight exposure during menopause can hinder the body’s ability to produce adequate vitamin D. Include vitamin D-rich foods like fatty fish, fortified dairy

This chapter has been written by Shaun Clayton , a Certified Nutritionist and Director of Operations and Finance at the PHA UK.

products, and egg yolks in your diet. (The term ‘fortified’ simply means that it is a product with added vitamins and minerals not normally found in them). Additionally, spending time outdoors in sunlight (with proper sun protection!) can help your body synthesise vitamin D. Everyone in the UK should be supplementing with Vitamin D due to the lack of sun exposure we get, so it’s worth discussing this with your GP. By maintaining sufficient vitamin D levels, you can optimise calcium utilisation and promote strong bones.

Fibre: Promoting digestive health and weight management

The hormonal fluctuations during menopause can contribute to weight gain and an increased risk of cardiovascular disease. Emphasising dietary fibre can help regulate digestion, manage weight, and reduce the risk of heart problems. Prioritise fibre-rich foods such as whole grains, fruits, vegetables, legumes, and nuts. These not only promote healthy digestion but also provide a feeling of fullness, aiding in weight control.

Phytoestrogens: Plant power for hormonal balance

Phytoestrogens are plant compounds that have a mild oestrogen-like effect in the body. They can help alleviate some menopausal symptoms by binding to oestrogen receptors. Foods rich in phytoestrogens include soy products like tofu and tempeh, flaxseeds, sesame seeds, and legumes. By incorporating these foods into your diet, you can potentially mitigate hot flashes, mood swings, and other discomforts associated with hormonal fluctuations during menopause. However, it’s essential to consult your GP or pharmacist to determine the right balance of phytoestrogens based on your individual health needs.

Omega-3 fatty acids: Heart-healthy allies

Omega-3 fatty acids offer anti-inflammatory benefits and support cardiovascular health. Including omega-3-rich foods in your diet can be particularly beneficial during menopause. Fatty fish like salmon, mackerel, and sardines, along with walnuts, flaxseeds, and chia seeds, are excellent sources of

these essential fats. By consuming omega-3 fatty acids regularly, you can reduce inflammation, lower the risk of heart disease, and support overall well-being during this transformative stage.

Hydration and urinary health

Hormonal changes during menopause can increase the risk of urinary tract infections and bladder issues. Adequate hydration is essential to support urinary tract health and overall wellbeing. Make sure to drink plenty of water throughout the day and consider incorporating hydrating foods such as fruits and vegetables into your meals. Herbal teas can also contribute to your fluid intake. By staying properly hydrated, you

can reduce the risk of urinary tract infections, maintain optimal urinary function, and support your overall health during menopause. Diuretics are something to consider with this, so it would be worth discussing what the optimal amount of water per day would be for you individually.

Limiting caffeine and alcohol

Don’t shoot the messenger but caffeine and alcohol consumption can worsen symptoms such as hot flashes, mood swings, and disrupted sleep during menopause. Reading the literature, it’s advisable to limit or avoid these substances as much as you can, particularly if they trigger discomfort to you personally. Caffeine is found in coffee, tea, energy drinks, and some sodas. There are, however, some fantastic, decaffeinated alternatives. When it comes to alcohol, moderation is key. If you choose to drink, do so in moderation and be mindful of how it affects your symptoms. By reducing caffeine and alcohol intake, you can potentially alleviate some of the quality-of-life challenges associated with menopause.

Navigating menopause involves embracing a holistic approach to wellbeing, and nutrition plays a crucial role in supporting this transformative phase. By focusing on key considerations such as calcium, vitamin D, fibre, phytoestrogens, omega-3 fatty acids, hydration, and moderating caffeine and alcohol intake, you can manage menopausal symptoms more effectively and support your long-term health. Remember that everyone’s experience is unique, so it’s important to consult with your specialist team, pharmacist or GP who can provide personalised guidance tailored to your specific needs.

and me Menopause

Sue has PAH and connective tissue disease and is in the early stages of menopause.

“I experience significant night sweats, generally in the days prior to when menstruation is due. My cycle has become much more irregular, with periods around three weeks apart.

My main issues are from fluid retention/bloating around the stomach area, which makes my chest area feel tight and uncomfortable too. I feel extremely drained and emotionally unbalanced, which is causing me to get anxious, irritable and upset – sometimes suddenly and for seemingly no good reason.

It has all definitely had a significant effect on my physical health. As I am only at an early stage in the menopause process, I have not yet taken any medication like HRT, but I have discussed this with both my PAH specialist and my scleroderma specialist.

My scleroderma specialist has arranged for me to have blood tests in relation to menopause issues for which I await feedback. I am trying to lose weight as this should hopefully help with the bloating/fluid retention issues if I am carrying a bit less.

When I discussed menopause issues with my specialists, I found them quite helpful and willing. My PH consultant said that taking HRT would not be a problem for me if this was felt necessary going forward, although I am hesitant to take any more medication. I feel like I must rattle already!

Don’t be afraid to speak to your medical team if something is a cause for concern for you, either physically or emotionally.”

Embracing exercise for overall wellbeing

Regular physical activity plays a vital role in supporting overall health during menopause. Engaging in exercise and activity helps maintain a healthy weight, improves bone density, reduces the risk of heart disease, and alleviates mood swings and stress. Find activities that you enjoy and make them a part of your routine.

Scan the code below to access PHA UK resources that can offer more information on what is safe with PH. We would always advise you consult with your specialist team to determine the most suitable exercise and activity plan based on your individual needs.

Online support and further information

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Ask

for help if you need it. Mood swings can be tough to deal with and there is help available, but it might not be offered – so you need to ask Rebecca, living with CTEPH

Online support and further information

The following websites provide information and resources specifically for women affected by menopause:

www.themenopausecharity.org

The Menopause Charity works to improve women’s and healthcare professionals’ understanding of the menopause.

www.menopausesupport.co.uk

Menopause Support is a not-for-profit community interest company and the home of the national #MakeMenopauseMatter campaign.

www.menopausematters.co.uk

An independent website providing up-to-date, accurate information about the menopause, menopausal symptoms and treatment options.

www.daisynetwork.org

Daisy Network is dedicated to supporting women diagnosed with Premature Ovarian Insufficiency (also known as premature menopause

and me Menopause

Jane, 52, has pulmonary arterial hypertension. She started experiencing the symptoms of menopause towards the end of her forties.

“Some of the menopause symptoms were very similar to either PH symptoms or the side effects of my medication, like joint pain and headaches.

I haven’t had any issues with drugs interacting, but both my PH team and my gynaecologist were keen to discuss interactions and found an HRT regime that was safe.

I have been on HRT for a while. I have Estradot patches which are changed twice a week and my Mirena coil was renewed. This has helped massively. The symptoms are pretty much under control most of the time, although the mood swings are still there sometimes. I was lucky that my GP listened to me from the start.

I spoke to my specialist PH centre first and asked if I was able to have HRT in general as I have never had any blood clots. This was agreed and then I spoke to my female GP who referred me to the gynaecologist at my local hospital. Between the gynaecologist and my PH team, they agreed a safe path forward.”

CHAT ONLINE WITH OTHER WOMEN WHO UNDERSTAND

You can talk directly to other women with PH who are affected by menopause in a private Facebook group which now has over 160 members. Log into Facebook and search ‘UK Women With Pulmonary Arterial Hypertension’ or scan this code with your mobile phone.

Please note, this group was set up independently of the PHA UK and is not moderated or managed by us.

Advice for loved ones 6 6

Although it can be hard at times, I find it helpful to try and put myself in her shoes. John, whose wife is experiencing menopause

Advice for loved ones

It can be hard for spouses, partners or family members to understand what’s going on when someone they love is going through the challenges of menopause. The advice below comes directly from women living with PH and menopause.

“Being supportive and offering a listening ear is the best thing you can do as a partner, relative or friend. It’s important to realise that going through the menopause is a significant change, both physically and emotionally, which can make an individual feel very different about themselves.”

“Do not dismiss or belittle what they are going through. PH can be very demoralising and additional issues can really push you, so help them to seek support –especially if they don’t get it straight away.”

“It isn’t always possible to relate to somebody else’s situation and how they feel, so we all need to make an extra effort to try to be understanding. Making it easy for somebody to be open about what they are experiencing will help immensely. If somebody can share when they are feeling awful, this will help all round as it will also explain their behaviour too at that time.”

and me Menopause

Anna has Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and experiences several menopausal symptoms including brain fog, watery eyes, loss of libido, hot flushes, urine infections and vaginal itching.

“I have found that some doctors at my surgery are not particularly helpful [when it comes to seeking help for menopause]. As soon as they see blood clots [CTEPH is related to clotting] that’s it, their computer system will not allow them to prescribe even just a mild cream.

So instead, I get a generic double sided A4 sheet of paper with symptoms and homeopathic pills, lotions and potions! One female GP did give some useful advice to use coconut oil on the itching though, and yes it does help.

I tend to leave myself little notes around the home if I forget things I have to do because of the terribly debilitating brain fog. And my husband and I sleep with a lightweight summer duvet all year round to help with the sweats and hot flushes.”

Did you know there’s a private Facebook group for people who love or care for someone with PH?

This forum is exclusively for family members, loved ones, and anyone who provides care or support for someone with the condition.

Set up the PHA UK, it’s a safe space to find connection with others.

Join at www. bit.ly/PHAUKCarersGroup

A safe and supportive space to connect with other carers

About the PHA UK

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Membership of the PHA UK is completely free and we welcome anyone with a connection to PH

About the PHA UK

Set up in 2000, the Pulmonary Hypertension Association (PHA UK) has grown to a membership of over 4,500. Our PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

Our work is focused around four key areas: Awareness and education

Support for people affected by PH Research Influence and advocacy

Today, the PHA UK team consists of a core group of staff, assisted by a large group of highly trained and experienced group of professionals working in healthcare, marketing, lobbying, external communications and academia.

Based in Sheffield, we work with our national network of associates to ensure we achieve our aims of

helping improve the lives of those affected by pulmonary hypertension.

As an entirely independent charity, we receive no Government funding – meaning we rely heavily on fundraising support to enable us to carry out our work.

Membership of the PHA UK is completely free and we welcome anyone with a connection to PH; including patients, family members and loved ones, and healthcare professionals too.

Join now at www.phauk.org

See some of our publications overleaf

Found this publication helpful?

You’ll find lots more titles in our online shop. They cover a wide range of topics, all designed to make life with PH a little easier. You can browse the range, and order for FREE, by scanning the code at the bottom of this page or visiting www.bit.ly/PHAUK_Publications

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PH & You

This comprehensive information guide provides a vital introduction to pulmonary hypertension. Sections include defining the disease, tests and diagnosis, specialist centres, useful contacts and what to expect from your hospital visits.

Medication & PH

A guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies including those taken orally, intravenously or via a nebuliser.

Intimacy & PH

This guide aims to help you understand how PH might affect your physical relationships and discusses ways of dealing with problems that may arise. After all, you haven’t changed – only your health has!

Palliative Care & PH

The first of its kind, this guide brings you important information about palliative care and how it can help people with PH, and their families, to live well.