Iron transfusion & an having a moan! - Endometriosis UK

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Iron transfusion & an having a moan!

Jasmin24 profile image

Hi ladies

Hope you are all keeping well.

This is an iron based question, but its a bit long winded.

1) I m still waiting for an MDT to be do for my 3rd lap, to see what would best route long term, has the specialist was quite happy to operate with less then half the info.

2) I've been experiencing pains, in the chest, as well as shortness of breath, and weakness, for a while . The bowel & bladder movements are not great. Has I now get the trots every couple of weeks.

Anyways I'm rambling, so after a much needed blood test, as you know when something isn't right I asked twice, and got it, as my GP is shockingly bad. I knew there was something wrong.

I needed an urgent iron transfusion, as I'm chronic anemic, and at risk of a heart attack. I have got another transfusion next week.

Does anyone else have this issue?

It will be my 3rd transfusion. I'm questioning everything. My GP, has shown no interest, my endo specialist would have been quick to cut me up, with very little info.

Do health problems care about their patients?

I was hospitalised 10 months ago with a consultant not taking my health seriously. I was taking a drug prescribed my a gyane consultant. I complained about the side effects. Received no help. The drug caused paralysis to my face and weakening to the right side of my body. I'm still can't work. I'm finally receiving physio for my face, pelvis and leg.

surely a specialist would research this an be putting things in place before surgery, like blood transfusion. Not gonna lie, I have no faith in any health care professionals.

I have asked to speak to the endo specialist now, as I'm sick of the secretary gaslighting me, an not replying to my emails.

Anyways had my monthly moan....hope everyone is keeping well & safe 💛

15 Replies

Hi yeah I have had iron transfusions due to being anaemic on and off for years, I got the ferinject one.. It seemingly has to hit a certain level/critical before we get infusions 🤷‍♀️Even though we spend months and years feeling fatigued. Also had infusions for other nutrients too due to bowel problems.

I also know what you mean about the medical secretaries they never ever call back, how rude.

I personally think we, being the patient, have to tell the doctors what we expect otherwise we may be left to suffer x

Tell me about!....

Quick question if you don't mind. Did you get any side effects from the infusion?

My kidneys feel like they have been 10 rounds with tyson, I keep getting a fever, chest pains still persist and just feel like crap, like I got the flu!

I don't recall have alot these symptoms last time!

Hi my first infusion was fine, the second one knocked me for six so to say. I came home to my bed, felt really ill. It was a feeling of very bad fatigue, light headed and nauseous x

Yes it really does knock you six.I got round two on Thursday, not looking forward to it. But thank you for sharing!

Hope it goes well x

Sorry to hear you’re having a tough time. Constantly having to push and chase for progress with your care is exhausting in itself, let alone when you’re also struggling with energy levels and pain 💕Your post was a bit of a revelation for me. can bowel issues be linked to anaemia? I’ve had shortness of breath, chest pain and palpitations around my period but now throughout the whole month, for months. Daily Kidney pain for a year, and more recently diarrhoea after eating a few times a month. Also constantly tired and sometimes get waves of being extremely fatigued after doing very little. I had put some of this down to suspected endo but now I’ve read your post, I’m wondering. I’m supposed to be having bloods taken to check for anaemia, but have had two failed attempts so far as my veins are rubbish!

Hi I would definitely say my anaemia and lack of other minerals is due to bowel problems as I suffer with diarrhoea. I wasn’t bleeding via period at the time. My bowel doctor had also confirmed it’s down to me loosing nutrients through my rear end. For a while I assumed it was from the front end when I was bleeding 🤷‍♀️Hopefully they can get bloods from you, I have crap veins now and they sometimes take it further down the arm, it’s sore but at least it gets it done x

Oh thank you, yes I hadn’t thought of the loss of nutrition! I don’t think the bowel issues are happening often enough to me to be causing that problem, but I’ve dipped in and out of anaemia in the past and as hubby pointed out, with endo you’re bleeding internally, not just from your womb, so that’s got to have an impact surely. I went into my health record and looked and bloods I had taken in May where my ferritin levels were pretty low but hb was fine. My husband is doing bloods for me as he’s a paramedic. He’s usually pretty good at getting needles in as he does it in the back of moving vehicles but he’s struggled this time! He tried the back of my hand and then threatened to go into my neck 🤢

That must be handy having a paramedic at home 💝being low on iron/ferritin can cause us to feel so lethargic & weak, I’m fed up of suffering with it x

He is very useful! 😂 I hope you’re feeling better soon.

Yes, I think the NHS are great in emergencies, but there are a lot of issues in other areas. I've kind of given up getting the help I need from the NHS. I went to my GP a while ago with heart palpitations, etc and they sent me for blood tests that they said were fine when I called. I found it hard to believe though, so went into my surgery and asked for a print out, only to discover that I was anemic. Needless to say, I always ask for individual results now if I have tests (or I ask for a print out). Through various issues of dealing with endo, chronic fatigue, etc I realised quite some time ago that I had to be my own doctor in some ways. The iron tablets they eventually gave me at the surgery really messed me up, so I did some research and ended up taking Solgar Gentle Iron and my iron levels really improved within 3 months (I took them with a high quality vitamin c powder - i.e. magnesium ascorbate). I've also tried to get help in regards to vitamin b12 levels in that there is now quite a body of evidence growing that some people, although they seem to have ok levels... the b12 is not making it into tissue and so many people are suffering from fatigue, etc. But I cannot get the help I need from my GP. I have 2 sisters who have similar problems, but we are struggling to get the right help. Suspected pernicious anemia. I think we will go for tests at a private hospital in the near future. Just to mention, I've also been on an anti Candida diet which helped a massive amount with bowel issues. I still tend to take high quality probiotics from time to time. Again, couldn't get any help with this on the NHS as they don't recognise it, but I genuinely think the diet saved my life... I was in such a state before. Unfortunately the diet didn't solve the endo problem, but we are all different. I know there are testimonies online of people being pain free after changing their diets. Anyway, feeling for you with all that you are going through. It's awful when you are not taken seriously. I hope things improve for you soon!! x

Jasmin24 profile image
Jasmin24 in reply to Washington1

HiI know what you mean about GPs. I spoke to the nurse about my symptoms about dizziness, heart palpitations, feeling tired, all the symptoms associated with anemia.

I got told to get iron supplements, but I was taking iron tablets, and gave me meds for the palpitations.

A patient knows when their is something wrongs. You know your own body, and they need to start listening to the patient.

I've done pretty much, everything I can, like changing my diet to help with the bloating. I do yoga. I have physio, due to weakening to the rightside of my body.

Just reading some of the comments, I didn't realise that you can loose nutritional value through bowel movements.

This website is so useful. Helps to get more of an understanding of the condition.

Thank you again 💛

You’re right, there’s so much self advocating! I feel like I know more about endo than my GP now. I have access to my health record through the NHS and Airmid apps which means I can see all my test results and some details from appointments etc. I’ll definitely look into the things you’ve mentioned, thanks. Really glad to hear you’ve had improvements.

Hi Jasmin,Sorry to hear this. I am anemic have endometriosis and fibroid. I recently had a blood Transfusion. And my g. P were very helpful. After I received my blood tests results I was immediately contacted early hours the next morning by the 111 service. And a doctor described me a symptomatic, breathless light-headed. I only waited 1 hour to be picked up and taken to A&E. Anyway had more blood tests as they couldn't find the right match due to Antibodies in my system it took a whole day to find the right blood match. I also had uterine scan. And that's when I found out it was the fibroid that caused the issue for anemia. Like you, I also don't have complete trust in the system. But I have to say I'm on the road to recovery and awaiting another blood test and iron meds to take. Anyway this all took place in UK. You didn't mention where abouts you are. I can only suggest to follow your heart and if you are not satisfied with how you are treated then to find another G. P who are willing to help you get the right support and care!

Wish you all the best!

Jasmin24 profile image
Jasmin24 in reply to Ladysparkle

Thank youI didn't think fibroids would cause this, but it makes sense.

I have to very large fibroids, cysts on the right ovary and adenomyosis.

So all of this could be contributors to the anemia.

I'm live in the Midlands. I've moved GP's 3 times now. I just feel all GP surgeries are the same.

Best wishes and thank you again 💛

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