MRI CT accuracy results confused

[iLoveMyTortoise]

Hi there. I’ve just come out the other side of one of the scariest couple of weeks of my life. I went to a private gynaecologist a few months ago who as well as thinking I probs had endo, wanted me to have an urgent mri scan because my oestrogen levels are very high indeed. I eventually had the scan on the NHS and got the results back. They showed I had nodularity of the peritoneum including a large mass of it. They were inferring strongly it was cancer. It was awful. Anyway my tumour markers came back within normal range and my CT scan came back on Thursday and was unable to detect the nodularity but showed vascularity of the pelvic walls.

I went back to the NHS gynaecologist for these results. She said great, you don’t have cancer so we’ll sign you off. I wanted to know what was happening in my pelvis and why my oestrogen levels were so high and she basically shrugged her shoulders and discharged me. She couldn’t give a rat’s! Obviously I was over the moon about the not dying thing but funnily enough I want to know why I’m ill all the time and what on Earth this all means.

Had anyone experienced results like these?

I will probs go back to the private one even though I’m skint. Feel very angry tbh.

Xx

[kittykins7]

Hi there,

You must be relieved about not having cancer, but I totally understand, of course you want to know what it is. You can't be left feeling rubbish in limbo.

I would hazard a guess it's endometriosis, with the high level of oestrogen sounds like oestrogen dominance, which means you have lower levels of progesterone. Endo feeds of oestrogen, so it's important you try to control it which you can do naturally by lifestyle changes such as diet and supplements. You can even get a natural progesterone cream from the yam plant which increases progesterone.

The only way to know for sure its endometriosis is by having a laparoscopy though.

Hope this helps. X

[iLoveMyTortoise in reply to kittykins7]

I’ve booked a GP phone call today and a private specialist for tomorrow. I’ll be asking them to put me on the mini pill but mainly what my scan results could mean. The private consultant has a special interest in endometriosis and is a surgeon.

Thanks x

[Cailleach]

You may well have endo then, and it needs further investigation/ treatment. Going back to the private consultant would probably be a good idea. If you want to stay with NHS you could go back to your own GP and ask for them to explain the findings to you, and the report from the second consultant. You could also ask them to move forward with investigation/ referral to a gynae specialising in endo. If you Google BSGE centres it will tell you if there is a specialist near you. That really doesn’t excuse the attitude of the NHS consultant who could have put your mind at rest, and started you on the path to endo diagnosis/ treatment.

Sorry you have had all this distress and worry, hope things improve x

[iLoveMyTortoise in reply to Cailleach]

Hi, I booked an appointment with my GP this afternoon and booked a private specialist for tomorrow evening. She has a special interest in endometriosis and is a surgeon. Hopefully this will speed things up because after the last fortnight my patience has really run out. Thanks for replying X