My MRI did not show endo despite my symptoms

[Pecas]

Hello everyone,

I have been with endometriosis for over 20 years and I have had 4 laparoscopies. The most recent laparoscopy was over 4 years ago. My symptoms worsened again 18 months ago.

I was going to have a diagnostic laparoscopy, but it was cancelled. Instead, I was told that first I should have an MRI and I agreed to it as I believed at the time it would be better for me as I have other health issues. So knowing via the MRI where my endometriosis is, it would help me as instead of having a diagnostic laparoscopy I could have an operative laparoscopy. At least it was what I thought.

I got my MRI a few days ago, but it did not show endometriosis which is very frustrating. Now, I do not know what to do. In my humble opinion, I believe I have endo and I cannot find another explanation for my symptoms. Do you have any advice?

I will see a gynaecologist in a few weeks' time, but I feel lost, powerless and disappointed. The hospital is not a BSGE centre, but the gynaecologist is an expert in endo. I would appreciate any insights.

[H4PP1]

Hi, this can’t be easy for you. When I was yet to be diagnosed I had an MRI that found nothing along with several transvaginal scans.

I got so frustrated that I did paid for a private MRI and told them exactly which area my pain was in and where to focus, that is when they said it was very much there. This was a very expensive option

Another option is to see if you can have some fascia release treatment with an alternative practitioner, sometimes adhesions can cause the pain and this helps to release adhesions and definitely gave me some relief?

I really hope you find some answers.

[Pecas in reply to H4PP1]

H4PP1 Many thanks for your reply. I will consider doing the MRI privately but I understand it is still a gamble. Regarding the fascia release treatment, I have never heard about it. Is this a kind of massage? Do you mind expanding on this? Thanks in advance.

[HotDiggidy]

Hi, it sounds like you have a consultant that does not understand endometriosis or the NICE guidelines.

Firstly, was your MRI completed using dye? You will know because they inject you beforehand. If not, then demand a rescan as any radiographer that knows anything will tell you Endo is difficult to spot without the dye.

Secondly, MRI is not even a requirement in the NICE guidelines before sending you for laparoscopy. If your symptoms match AND you have a history of endo then it's a no brainer. The fact you have a consultant CANCELLING surgery for an MRI shows they are really not educated enough on this complex condition.

I would strongly urge you to get a second opinion which is your right under the NHS. And ideally just straight up change consultants. This is where you have a couple of options:

1) research your surgeon and then request the second opinion through your GP and on the NHS specifying who you want to see (again you have this right) .

2) research your surgeon but this time make sure they work in both a private and NHS hospital. If your funds allow, pay as you go to have a consult with them at the private hospital (usually around £250 for the initial appointment). Be upfront that you will need surgery through the NHS and they will generally put you on their NHS list. When I did it this way my wait for surgery was only 5 weeks at a time when the standard was 18 months. You will need to request all your medical documents relating to your endo from your previous hospital, ideally with the MRI scan and results too.

I would also suggest joining Nancy's Nook on Facebook for more fact based information as these doctors are NOT advocating for you right now.

For choosing a surgeon, start with the BSGE list as that generally ensures they are more up to date on gold standards with endo diagnosis and treatment.

Hope that's not too intense and happy to help if you have any queries.

M

[Pecas in reply to HotDiggidy]

HotDiggidy Hello. Many thanks for your comprehensive response.

I had two injections, Buscopan before my MRI started and then the dye 5 minutes before it was going to finish. So, from the 30 minutes that my MRI lasted, I only got the dye for 5 minutes. I was really confused why I only got the dye at the end.

Thanks for your suggestions. I have now checked the NICE guidance: nice.org.uk/guidance/ng73 and requested to join the Facebook group that you suggested.

First I will investigate what I need to do to get a second opinion. Thanks again for your help.

[AlexaMac]

Hi l can understand your queries, l was one of the lucky ones in that l did not have the dye or any other prep, but my MRI showed endo around womb and uterus also a tumour infiltrated into the wall of my womb, which it proved had been the cause of my post menopause bleeding l was 76 at the time.

I cannot tell you what your next steps should be but please see this through and hopefully you will soon get the treatments you deserve.

Best wishes Alexa 🌸🌸🌸