I am not sure what to do next ?

[nicola19cola]

Sorry its bit of a long one and I am dyslexic so please bare with me but I am really unsure what to do . I am 33 and for 13 years I was miss diagnosed with stomach issues that the hospital said was a number of things e.g ibs, gallbladder. It wasn't untill 2 years ago I found out what it was which was endometriosis. 4 years ago I started with heart palpitations and high blood pressure but at the time they said it was my gallbladder and that was also causing the stomach problems. So I had that removed but after the operation I woke up with very low oxygen and struggling to breath . After I was still in pain and still getting the palpitations.. then they said it was the medication I was on as I was on high amount of opioids and other stuff. Then they finally found out it was endometriosis but sadly it was too late and it destroyed my insides . So at the beginning of this year I had a full hysterectomy and when I woke up I again had really low blood pressure and struggling to breath . This time though I also had heart pain and pain in my upper back . A doctor was ment to see me when I woke up but none came . I didn't even know how the operation went . I got sent home and I got worst . My heart felt fast I was so dizzy and burning up and felt sick and I could hear my pulse none stop and had pain in my heart as well as some palpitations. I went to my gp and my pulse shot up to 170 and my blood pressure was high. I got sent to hospital where they did test but was unsure what was wrong with me . It took 6 days for them to get my heart rate down but they still don't know what was wrong . The only test that came back with something was my alt which was 284 . Back at home I got a bit better in some ways but my heart started to hurt more . Any movement made it beat way faster then it should and I kept getting palpitations and my blood pressure was high. No medication would work to bring my blood pressure down and no doctors would do anything else . They kept saying I was 33 and female so it's probably not a heart problem. It started to get bad the pain and I had a few trips in a&e where they would just do a ecg and send me home . Again they would just say I am 33 and female it's nothing or just anxiety. In November I was fast a sleep and woke up as if some one scared me but didn't. My whole body jumped awake and my heart felt so fast and wouldn't slow down . I went to a&e and found I had af and my pulse was 225 . After loads of medication as some wouldn't work . My heart finally went back to normal. I was sent home after spending all day there . At home I was struggling to breath felt extremely weak. After a few days I was sent back in hospital where I spent 6 days. Turns out I had a reaction to the medication and couldn't breathe. Also my heart was beating to fast but it wasn't in af . After new meds, I was sent home. I am now at home but still really struggling. I still got alot of pain in my heart and in my left arm . I am on beta blockers , blood thinners and flecainide. My heart rate is down and so it my blood pressure. My alt is now 75 and my cholesterol is 5.7 . My doctors don't seem to want to do anything else . I had a ultrasound scan on my heart and it came back OK but that's all I had. When I ask the doctors what's causing the pain they just said they dont know and it could just be a thing I have and will have to live with. They don't know why I got the af and they don't seem bothered. I am struggling to live I can hardly move . I paid alot of money to go private to get my hysterectomy so I could be better and live a normal life and now I am in debt and alot sicker . Not sure what to do next to be honest. Will the pain just take time to go or should I ask for certain test . Would love to hear people's thoughts .

[jayjay10000]

Hi Nicola, I just like to say welcome to the group. Thank you for posting.It's like having a extended family on here. Plenty of people on here to give good advice and a listening ear when ever you need help with anything. After reading your post your heart issues are really important to get sorted out asap. My first thought is to go privately and see a Cardiologist consultant and get the right tests done asap. Life is too short especially waiting for answers which you are needing. Since I been diagnosed with Arotic Root dilation of 40mm in March 2023, my appointment to see my local Cardiologist team at the hospital is not until the end of March 2024. I can not get any answers about my heart health issues until then, I struggle on a daily basis with health Anxiety it's really getting me down , life at the moment is hard, I suffer from heart palpitations myself and chest tightness. I just want my life back with no metal health issues and no body pain on a daily basis. Take care of yourself.

[Milkfairy Heart Star]

Hello,

I am so sorry to read your story. You have faced so many challenges all at once.

Women who have an early menopause following a hysterectomy are more at risk of developing microvascular dysfunction which causes microvascular angina.

Have you been offered HRT since your hysterectomy?

I suggest you ask your Cardiology team to consider if microvascular angina maybe a possible cause of your symptoms.

The BHF has this information about microvascular angina.

bhf.org.uk/informationsuppo...

You may find it helpful to call the BHF helpline and speak to one of the cardiac nurse too.

bhf.org.uk/informationsuppo...

[nicola19cola in reply to Milkfairy]

Thank you for ur reply. Yes I am on hrt but I only started it 8 weeks after my operation. Also when they went it my ovaries were completely destroyed . So I was going through menopause before I even had the operation. I will ask my doctor about this and see if it is that that's causing the problems.

[Fullofheart]

Hi nicolaLike you I have endometriosis and have had a couple of surgeries over the years. I also have AF and have had a few procedures for that.

I get chest pain and breathlessness with AF and was dismissed for years as young and female. I was late 20s when it all started.

Fast forward 20 years I had much worse heart symptoms since being menopausal and tests showed mild heart failure, hence proactive treatment last year (3 ablations). But I'd also had 20 years of untreated AF which was the biggest factor. I'm doing OK now with HRT and the heart has settled following the ablations last year. So, all good.

You might consider paying for a private cardiology appt. It would be about £200. But overall its definitely reassuring that the tests you have had are not showing anything. Even if all you get from the consultation is reassurance I think that would be worth it. If you need treatment, you'd be put on an NHS list.

Let us know how you get on 🌸

[MikeThePike]

Hi Nicola, I'm very sorry to hear about your health problems. I think you have been treated awfully by the NHS. I can't offer any medical advice but one thing I will say is make sure you keep an accurate diary of ALL your dealings with the various doctors, hospitals and treatments that you have had. Make sure you have all the dates and times recorded in case you decide to take legal action against the NHS. It sounds like a lot of misdiagnosis, incompetence and negligence happened in your case and you may be entitled to financial compensation. I understand that is not your main concern right now but you have been treated terribly and deserve to be compensated. Please look into this. Best wishes.

[nicola19cola in reply to MikeThePike]

Thank you . I have thought about legal action but wasn't to sure if I had a case . I think I am definitely going to look in to it though as I been through alot of pain and I feel like this could of all been avoided. When the doctor at the hospital kept saying I had ibs I kept telling them I think they are wrong and could they do more test . They said because I couldn't come to terms with the ibs I was making my self sicker and I must have depression. So they made me do therapy to learn to accept it . Then it turns out I was right and I don't have ibs but endometriosis . It was a gp who found out I had endometriosis and she told me they actually found it in 2011 the 1st year I was ill but it was on a 2 page letter and the 2nd page had one line saying found endometriosis take action and it seemed no one read the 2nd page . I also found out the doctor who kept pushing ibs was trying to become a ibs specialist and was telling everyone they had ibs and he had one book out and was trying to get a 2nd book out . We actually had some doctors complain about him to us . That doctor has now left the nhs but is working in a private hospital. He had me on so much medication that I probably didn't need like I was on fentanyl, morphine and trampoline all at the same time and high amount . I am lucky I didn't over does but can't help but think could this be causing my heart problems now . I also though they would learn from miss treating me with the endos and really help me with my heart but it doesn't seem to be the case. I just feel really let down and I lost my chances of having kids and now my heart is bad and I just feel like it's partly there fault

[quirk13]

If they missed the line saying endometriosis take action that alone is negligence. You should speak to a solicitor specializing in medical negligence. I would do that before anything else. They may suggest private medical consultations and add that to your claim. It would seem your life has been really impacted through missed diagnosis.

I agree seeing a cardiologist privately may be useful. I did to speed things up. It cost £240 for the first appointment and £200 for subsequent. Once a plan forward was made my cardiologist transferred me to his NHS list. If you can try to find out which cardiologist comes recommended. I was lucky as my daughter is a nurse and worked with all the cardiologists in my local hospital.

You are understandably anxious which won't be helping. Have you considered talking therapy. Your anxiety and mental health could also do with some support

Let us know how you get on

[Bluehope81]

Not medical advice, opinions and suggestions only.

Just literally wrote this on another post.

Highly unlikely to be CAD, extremely unlikely, it takes decades to progress and lay the foundations. On a standard western diet, fatty streaks are seen developing in the teenage years and early 20's but still take another decade before the process develops into calcium strata, which can be detected, and from that another decade minimum or two/three decades before it obstructs the vessels. In conclusion extremely unlikely

Please do get a CAC scan purely to put your mind at rest with CAC/CAD.

Have any gp's or doctors considered intercoastal muscle degenerative disease/or any intercoastal muscle issues? This mimics heart issues and is more common in Woman.

Do you have any spinal issues, or unknown, pain into the arm also consider Thoracic Outlet Syndrome, consider musco-skeletal issues once heart issues have been ruled out.

I hope you take legal action too, this makes me sad to hear of this, I was misdiagnosed twice in the UK, one time the doctor told me I would be in a wheelchair until I was 55 and nothing could be done for me. Also misdiagnosed for burst appendix they told me it was IBS, but I refused to leave the hospital until a CT was done, and then it was found.

It's going to take time to recover from your surgery, so there is still hope that a lot of the pain and anxiety will go away. Sorry I missed if you had been diagnosed with AF or hadn't been?

Being in lots of pain can spike your blood pressure which can then set your heart off into SVT , fast heart rate, anxiety attacks also can spark off a fast heart rate, 225 is very high though I am not sure if an anxiety attack could go that high, but in medicine anything is possible.

Have you had an echocardiogram?