HELP, I can't put my finger on what is wrong!

[Lauren233]

Hello, I was wondering if anyone has had the same situation or could help me with mine, I recently had some blood tests, full blood count, liver function test, clotting screen test, B12 and hemoglobin A1C. My full blood count came back Borderline and Liver function test came back Abnormal , the rest came back fine but they lost my clotting one, so I went back for the clotting and full blood count and they came back fine as I started to take the iron tablets they gave me, just need to go again for my liver one . it said on my doctors notes they needed to check for blood loss then start iron replacement. I was on 200mg of iron tables for a month. mentally feel so much better and recently got rid of a lot of stress too.

when I have my periods they are painless and normal flow but I have massive blood clots sometimes once and day or 7/10 a day. and my periods go on for about 2-3 weeks. my doctors have requested a scan but said I might not get it due to not being important, but if I have to wait I don't mind going private. The clinician said it could be fibroids but I have no idea.

[MalachiteAli]

I had super heavy periods my whole life but didn't realise it was a problem health wise, was taught not to complain by my mum. I was diagnosed anaemic during both my pregnancies then discovered I was still anaemic when my second child was 4. A kind GP questioned me about my periods and said they were very heavy and referred me to gynae.

The gynaecologist examined me internally, took a biopsy and had an internal ultrasound done, then said categorically I did not have endo so I should have uterine endometrial thermal ablation, which I agreed to but also requested lap sterilisation cause I am finished making babies and hate hormonal contraception. They found endo during lap, took pics, then failed to inform me. Then I started having severe pain and was still told that heavy bleeding and acute pain isn't endo, despite it already being on my notes. Was told to wait and see whether pain returns, which it did repeatedly.

Anyway to cut a long story short, I complained to health board and my local politician, requested to see a BGSE endo specialist and saw him a few weeks back. He wants to do surgery and agreed to request an MRI which I've just had. I hope it's conclusive as it seems none of these tests really are on their own. Lap surgery will only see the bits that are directly examined. MRI might see adenomyosis, bowel or DIE, but might not see everything. I had one internal US before diagnosis that found nothing and one after that was the same. But I've seen pics of the endo they found during lap.

I think the doctors need to break out of this medical model and see endo patients as humans that experience a host of symptoms that need to be listened to and treated not just by feeding us meds and giving us surgery but by trying a wider range of treatments. I am seeing a pelvic physio and hoping to get to speak with the pain clinic at some point. With the new specialist endo nurses (I spoke with one a week or so ago and she was awesome) hopefully things are beginning to move in the right direction.

[MalachiteAli in reply to MalachiteAli]

Btw before I was offered ablation for heavy periods, i was offered first the pill/contraceptive injection but hormones mess with my mental health. Then I was asked to try Mirena coil, so I did but that's also hormonal, so that didn't last long. Then I was offered tranexamic acid but that gave me terrible skin. Then ablation was offered. I was taking iron supplements for all of that time. My pain started after surgery and after starting working in a stressful job. I hope you get some answers and support with your heavy periods but don't be told they aren't a problem if they are for you, it will cause fatigue. Also they are potentially a symptom of endo.

[Avourneen]

Go private and get a scan done by someone who knows what they are doing. YOUr health is really important. There are so many of us on here who have really terrible endo because we didn't get checked out early enough and then the disease spreads and is very very difficult to fix.

IF you get checked out you will soon find out what is wrong. Scans can actually show whats wrong very clearly nowadays as long as they are done by an expert. Drop me a line and I'll give you some suggestions.