Amanda knew something wasn't right, but had a long road to a SCAD diagnosis


I started to experience chest pains and flutters around five years ago. I’m not one for bothering my GP but I knew something wasn’t right; I’m 40 and experiencing chest pain. I visited the GP on a few occasions over the last five years but after having my blood pressure taken and a listen to my chest, I was told that everything seemed OK and, despite my blood pressure being a little high, I was told that it was nothing to worry about at my age.

On one visit, the GP suggested that it could be my nervous system and prescribed medication, but it left me feeling drowsy and sick so I stopped taking it. I visited the GP again to explain how ill I was feeling in general – tiredness, chest pain, pains in my arms, dizzy when I lay down or stood up, sweating, passing out when I was sick, but I was told that I could only discuss one issue per visit, so I went away.

I consider my life to be fast paced, working full time, a Mum, a daughter worrying about my sick father, so I put everything down to life. I went back to the GP some time after this visit, and the GP agreed to refer me to Derby Hospital for an ECG and treadmill test.

I attended this appointment, but was advised by the nurse that she wasn’t going to complete the treadmill test because I didn’t experience chest pain when using the gym. She then did the ECG, which was fine, but as she started to remove the wires, I asked her to do the ECG again because I was now having chest pains and she refused to as she thought that the ECG would have picked this up.

The meeting ended with the nurse telling me that everything was fine and that I wasn’t at any risk of heart attack or heart disease due to my lifestyle, which was great news, but she then followed it with “You could try losing some weight as this may help with the chest pain.”

I informed the nurse that I had lost three stone in weight recently and stopped smoking and was still on a journey to lose at least one more stone to get to my target (I was around 10.5 stone 5ft tall and looking to get to 9.5 stone). This, of course, absolutely devastated me and left me feeling really hurt and angry, but she is a nurse and must know what she’s talking about!

More chest pain

During 2020 the chest pains and flutters became more frequent and could happen at any time, walking, sitting watching television, at work, lying in bed but especially around the time of my period. My periods had become irregular, some months I could have two or three periods and the pain I was experiencing was more intense than usual.

With this I mind and the hot sweats I was experiencing and tiredness I assumed that it could be the start of the menopause or something to do with the cyst that was discovered during my routine smear test in January 2019, so I booked an appointment to get it checked out.

The GP did an examination and the results came back OK, but I spoke to the doctor again to stress that I thought something was definitely not right and again explained about the chest pains I was experiencing.

This doctor referred me for an ultrasound scan, which was returned as ‘borderline’ so I asked if I could be referred for further investigation as I thought I could potentially have endometriosis.

I was referred to a local gynaecologist who confirmed in October 2020 that my ultrasound scan looked normal and didn’t think it was endometriosis, even when I explained chest pain. She was happy to get me booked in for the camera and biopsy and suggested the Mirena coil to help with my periods, but I didn’t want to have the coil.

I left this appointment knowing they would be in touch to offer me an appointment and a prescription for the coil should I change my mind. She also recommended that I speak to the GP again about my chest pain…

Scared to sleep

Due to Covid I could only get a telephone appointment with the GP, I explained that I was now extremely concerned about the chest pain and wanted to be referred to the relevant department that can explore the issue further. By this point I was so scared when going to sleep at night thinking that I could die in my sleep and the thought of me not being here for my family absolutely played on my mind every single day!

The GP referred me to Cardiology where I was told very bluntly that I would be looking at an appointment in 2021. I explained that I’m a 45-year-old woman experiencing chest pains and flutters, I couldn’t wait until the next year, but the lady simply said, “I know”, and put the phone down!

I got back in touch with the GP and told him about an episode of pain that I had lasting for four hours during the night and he agreed to refer me for a heart monitor which was in October 2020. I recorded two or three episodes of pain, each happening during the evening as I sat watching TV.

The results came back and my heart rate during this time was 105bpm, which is nothing to worry about apparently. I questioned the GP because a heart rate of 105bpm when my normal rate is around 70/75 couldn’t be right. He said that it could have been down to exercise, but I explained that I was simply relaxing and watching TV.

The GP asked me what I wanted to do and I confirmed that I want to be referred to Cardiology for further investigation. Weeks past and I hadn’t heard anything until just before Christmas 2020 when he asked if I’d heard anything and I confirmed that I hadn’t. I also told him that I had spoken to a solicitor at work for advice as I felt completely neglected and let down.

He said that he would chase my referral up and asked what else I wanted him to do… I said: “I’m not a doctor, but I think that I should be sent for blood tests and chest scan while waiting for the referral date.” He said the best thing to do was to get the referral sorted and if the chest pain got worse to call 999 or go to an A&E and he would contact me after Christmas.

The week between Christmas and New Year I received a referral letter where I went online to book an appointment with Nottingham City Hospital (My personal choice as they did my heart operation back in 2003). I was successful in getting an appointment Thursday 28 January 2021. I was so happy that I had finally managed to get an appointment, but it was too late…

Crushing pain

Monday 25 January 2021 6.30am, as I finished my morning cup of tea in bed, I started to feel a strange pain in my upper back as if something had popped then spreading to my chest causing crushing pain. I tried to go to the toilet, but the pain was too much.

I went downstairs to my husband and he rubbed my back for 20 minutes and the pain passed leaving me feeling very strange/drained. He tried to call 111 but couldn’t get through due to how busy they were. I did what I always do… Put it behind me and move on. I went to get ready for work, planning to go about my normal day, but when I got downstairs, I realised that something was drastically wrong and if I went to work I could make it worse.

Despite telling my body to pack it in and just wait until my appointment on Thursday it didn’t…

We eventually got through to 111 a couple of hours later and they arranged for an ambulance. I was more worried about wasting their time because of the demand on the NHS due to Covid and calling in sick to work than anything else!

The paramedic arrived, lovely chap, he did an ECG that looked OK and gave me aspirin and GTN spray and advised that he was going to arrange for a crew to take me to hospital to do a blood test to rule everything out. At this point I was sure that I would be told everything’s OK as I have been in the past, I certainly wasn’t expecting the outcome!

When I arrived at QMC Nottingham my blood pressure was taken, which was high, and bloods were taken. About an hour later I was called through to cubicles by a doctor who explained what they were looking for… I heard three or four things, one being heart attack, and thought that’s not me because I’ve already been told that I’m not at risk, but he confirmed that my troponin level had come back at 1900 which would suggest a heart attack!

I was in complete shock and really couldn’t take anything in that he was telling me. He took me through to a specialist where he explained that I would be transferred to Nottingham City Hospital for further investigation.

I was left on a bed in A&E just watching the world go by for about seven hours, left to cry alone (thanks to Covid) and fear the worst… Could I have another heart attack right here and now and die? How was my husband feeling after a very distraught phone call to tell him that I’d had a heart attack? What will my son think? Who will look after my Dad?

I was transferred to Nottingham City hospital around 10.30pm by two lovely chaps and my husband was waiting for me with my overnight bag, which made my day. I was settled on the ward by two amazing nurses who made me feel at home. They provided a big mug of tea and a sandwich thank goodness!

I was closely monitored during the night and seen in the morning by a doctor, who had actually spotted something on the ECG (Hallelujah, finally!). The doctor organised an angiogram for later that day. I managed to tell one of the nurses that I had an appointment booked on Thursday with Cardiology and that may need to be cancelled, but they couldn’t find the appointment.

As I lay on the table being prepared for my angiogram, I was asked AGAIN what I’m allergic to and confirmed that I’m allergic to Iodine, which is what they were about to pump into my body… Thank goodness for the final checks! They gave me some steroids and antihistamine and pumped a little bit of Iodine into me and waited to check for the reaction. No reaction so they went ahead with the procedure.

It’s SCAD!

I was told at the end that I had SCAD, given a leaflet and told that I may be contacted by the research team in Leicester as it is a rare condition. That was really it, I was feeling a little relieved that they had found something finally but I was also feeling incredibly overwhelmed with it all.

I left the hospital that evening knowing that I had to rest for about four weeks and that the cardiac rehabilitation nurses would be in touch.

I had missed two calls from my GP and didn’t manage to speak to him later that week. But after receiving the post on Thursday morning I could guess why he was calling me. I received a letter from Nottingham City Hospital Cardiology on the day of my appointment, informing me that they had cancelled it and referred me back to my GP!

I finally got to speak to my GP on Friday evening when he informed me that the hospital had cancelled my appointment because they didn’t think I needed Cardiology care. He mentioned that he noticed I was taken to hospital on Monday. I was absolutely devastated and cried uncontrollably as I told him it was all too late!

The GP said he had only heard of SCAD at medical school which led me to tell him to go and educate himself and his colleagues as I believed they had all completely and utterly let me down and put my life at risk!

I also told him that nobody knows their body like the patient and that doctors should bear that in mind and to never ever dismiss a middle-aged woman suffering from ongoing chest pains.

A month later 26 February I had to call 111 again due to crushing chest pain, no coincidence that it was the second day of my period (my HA/SCAD was the second day of period). Thankfully after two blood tests they confirmed that my troponin levels were at 16, ‘the unknown zone’, and that this could be angina or due to my SCAD.

This nurse told me that SCAD is rare and really not a lot is known about it… I’m completely used to hearing this now! He prescribed angina tablets and, sure enough, I was back in hospital two days later due to having a bad reaction to them, only to be told that they could have increased the dosage on one of my existing tablets.

This nurse told me that if you could pick a heart attack pick this one as I will heal and that my arteries are clear. This for the first time in weeks gave me some hope.

One thing I am so grateful for is the SCAD survivors Facebook group. I have received all the information that I know from this group and feel completely supported by all its members. I really don’t know where I would be without it.

Me now…

I’ve had to fight to get an emergency coil fitted as I know this helped other SCAD survivors with chest pain linked to their periods. I’ve pushed the GP to be referred to Glenfield Hospital because I’m fed up with hearing that nobody knows much about SCAD. I asked the doctor at my three-month check when to expect my head to hip scan as recommended by Dr David Adlam and other SCAD experts. I’ve provided my surgery with the links to Beat SCAD information, which will hopefully educate the surgery team.

I’m following the cardiac rehabilitation programme and walking at least 30 minutes per day. I’m mentally strong, which is so important when you experience trauma, and practising good resilience, this is through my own determination. My echocardiogram results show no permanent heart damage but a leaky valve, which I’m told is nothing to worry about!

My wish…

Increased awareness among women and within the NHS. Increased awareness within Gynaecology, as they may see patients that experience chest pain during their cycle and not make the link. I know my Gynaecologist didn’t know about SCAD – had she known about this back in October, she may have referred me as a potential SCAD patient and I would have been seen by Cardiology, but hindsight is a wonderful thing!

SCAD survivors need to know before going home what it is and how they will recover; they need to understand that they may experience ongoing chest pain during their recovery. What medication they have been prescribed and why, what they can and can’t do, what they need to avoid due to the new medication they are taking.

They need reassurance and hope and to be armed with as much information as possible not to be continually told that it is a rare condition and still being researched, leaving us nervous, anxious, uninformed and mentally unstable.

One year on…

I’m in a much better place. I don’t have as many emotional breakdowns as I did and am not scared every single day. I still have good and bad days, especially when I feel unwell due to chest pain or increased blood pressure.

I have taken some short breaks away to the seaside to relax, recharge and create special memories. I’m still very much on a journey but, as each month goes by, I feel stronger mentally and physically. I am lucky to have so many special people in my life who have supported my journey who I will be forever grateful to.

To all new SCAD survivors reading this…

It really does get easier and you will find the new you. Don’t be angry at your body for what it has done, be grateful that it saved you and enjoy every moment!