Scan turned up nothing... Back to the drawing board

[Doubletrouble9088]

Hi all,

I went in for my fourth scan today at a different NHS trust and it's was clear (was a very basic scam not seeing if my ovaries could move etc just having a look). All of my other scans showed issues but my doctor can't access these. I'm pretty much screwed aren't I? I just feel like I'm back at the drawing board but I know there is something wrong.

I just need the surgery, I need to know I'm not going crazy

[EndoJaz]

Keep on as I have been suffering for 3 yrs post hysterectomy and was told nothing on scans, finally had a lap 2 weeks ago and it was found and removed. Gp told me I was imagining the pain etc it’s so hard but never give up, we know our bodies. Good luck x

[Doubletrouble9088 in reply to EndoJaz]

Thank you, I genuinely feel like I'm imagining being so tired all the time but then I have a flare up and it just makes me realise things aren't normal!

[Lofty1589]

It doesn’t always show up on scans and if the one delivering the scan isn’t experienced enough to see Endo, then it can be missed. Keep pushing

[Doubletrouble9088 in reply to Lofty1589]

Thank you 💛

[Moon_maiden]

The only real way to confirm endo is lap. As has been said, ultrasound they need to be specialist in the subject, and MRI likely to only show deep infiltrating endo. Will rule out other things. If you do have surgery make sure they have experience and know what to look for.

Good luck, hopefully they’ve only done this to rule out other things 🤞

[Lindle]

It's best to take things methodically and drive your care yourself based on guidelines your doctor should be applying. First and foremost endo is diagnosed by symptoms and signs and clear scans don't rule it out. The NICE guideline confirms this:

1.5 Diagnosing endometriosis

1.5.1Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation.

nice.org.uk/guidance/ng73/c...

If you know that previous scans have shown something then I suggest you get copies of all your hospital records (specify scan reports as well as everything else they hold). They have 28 days to give them to you. You can then organise all the 'evidence' and ensure the correct treatment path is followed for suspected endo. Guidance on how to get your records is here:

bma.org.uk/media/2821/bma-a...

If you need any info and guidance on treatment pathways please feel free to pm me. x

[hilkora]

I gave up with NHS ultrasound and only do private with an endo specialist. NHS ultrasound was 5mins and diagnosis 'possible' endo. Private was 30mins with consultant checking for endo in my kidneys, bladder, bowel, pouch of douglas and ovaries. Diagnosed with stage IV endo and endometriomas. Cost £290 but money well spent x

[Noodle1984]

I had so many scans over the years and I would show nothing. It wasn’t until later when I had an mri that they saw adenomyosis and two fibroids. Then I had more ultra sounds that showed nothing. It wasn’t until last year that I went to a Endo and pelvic pain (center of excellence, I’m in Canada) that they could tell with a trans vaginal ultra sound that I had stage 4 Endo. But only a super knowledgeable specialist can do this. And it isn’t definitive. Only a lap can for sure say you have endo.

Keep fighting for what you deserve. It isn’t right that we have to but it’s the only way to keep on top of things.

Some things you can do now to make your life a bit easier. I would try and get onto a contraceptive now if you can. Endo feeds on estrogen so the more your hormones are free to roam your Endo grows more. You can do back to back birth control pills and skip your period or get an iud. There are a ton of options. Any Endo specialist you see will tell you that it’s important to control the disease. Eliminate wheat/gluten, dairy and sugar from your diet as these cause inflammation in the body. It’s super difficult but really will help, it’s just something you have to be strict with. This is something that takes a while for it to show it’s helping as your insides have to heal. Remove as much processed food from your diet and eat as organic as you can. Something else you can do is find a specialized pelvic and Endo physiotherapist. They will give you specialized exercises for certain issues you may have like incontinence, pain on penetration, how to strengthen your pelvic floor, etc.