Four PHA UK members share their own experiences of 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 have been together 24/7.

I decided to speak with my PH team in 2021, 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.”

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.

*Name has been changed on request

“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 this page for details of one specifically for women with PAH]. Never suffer alone.”

Jayne, 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 since the middle of 2020.  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 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.”

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

*Name has been changed on request

“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 the weight I put on during the lockdowns as this should hopefully help with the bloating/fluid retention issues if I am carrying a bit less weight.

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. “

If you would like to share your menopause experiences to help other women with PH, please email