Scan queries

[Watedaha]

Confused x-rays and pelvic scan show no problems what do I need to get confirmation and treatment of this awful illness 😭

[Consumer_researcher]

Hi,

I had my scan (ultrasound and internal scan) last week ahead of my laparoscopy a week on Wednesday.

Prior to this, I had an ultrasound about 18 months ago (but not an internal scan).

Many Doctors have explained to me that the only way to diagnose and treat Endo is to have keyhole surgery.

My ultrasound scan from 18 months ago showed absolutely nothing. I was concerned by this as I had struggled with the pain for years so wondered why nothing showed up. They explained that you can still have Endo and it not show up on a scan.

However, after not having an internal scan 18 months ago (only an ultrasound), I had an internal scan last week and they found something near one of my Fallopian tubes. They cannot confirm what it is or if it is Endo but that is what they will hopefully be able to discuss post.

My advice would be to push for an internal scan as something may well show up on that!

Frustratingly, the only way they can confirm is keyhole surgery.

Hope that helps! ❤️

[Immy2000]

I am the same I had blood tests and external ultrasound nothing has come up. I get constant really bad unbearable pain, I have my internal scan in October to see if I have endometriosis or not. I haven’t been able to go sooner because of covid. I have been in pain for over a year, they are only just doing something about it. Til then they have put me on depo provera injection (contraception) it should help my pain.

[Chrissie66 in reply to Immy2000]

Immy, an internal scan can’t diagnose endometriosis; they have to have a proper look inside - do you mean you’re having a laparoscopy in October?

Endo can show up on scans, especially cysts, but only after you’ve been diagnosed. Until then, anything that shows up could be anything; until they’ve actually opened you up and seen it with their own eyes they can’t say exactly what it is.

[Immy2000 in reply to Chrissie66]

They said they were gonna do an internal ultrasound.

[Chrissie66 in reply to Immy2000]

An internal ultrasound when they put the probe up into the vagina sometimes picks up more than a general ultrasound that goes over your belly, but it cannot diagnose endometriosis.

They may well pick up a cyst that was ‘hiding’ during the normal ultrasound but even if they do, they cannot diagnose it as endometriosis.

The only way to diagnose endometriosis currently is via surgery.

It may well be that they won’t do any surgery until they’ve done an internal scan, but that seem’s like a strange way to go about things.

Have you actually got an appointment for the internal scan? x

[Immy2000 in reply to Chrissie66]

Yeah I have it on the 10th of October I think

[Whoisthis]

All my scans have been clear, including a 3D expensive bugger in London.. I went for excision surgery and had endo on my bladder, pounce if Douglas and pelvic walls. So I’m a walking example of how scans don’t always show- my MRI was clear etc.

I’m the end I had to pay privately as the NHS wouldn’t listen to me as my “scans are clear”

[Chrissie66 in reply to Whoisthis]

Hi - how did you go about getting your incision surgery? Were you able to do it ‘just’ on the basis of your symptoms? x

[Whoisthis in reply to Chrissie66]

I had to take a massive leap of faith and pay privately I found an excision surgeon I can pass his name, we agreed the symptoms all pointed to endo and he agreed to do the surgery, so I went into surgery not knowing for sure. I can’t tell you what a relief I was to wake up with him telling me what he had removed, full video of the operation and pathology results. It would never of been the same outcome via the NHS and I’m so so grateful to him and the fact I was able to find the money to pay and had amazing aftercare - I was surprised to be honest as the total was approx 5k and that was Harley street, London hospital and two nights stay.

It’s been the best thing I’ve ever done, to self advocate for my own care and prove the GPS wrong.

I’d prefer not to have it, but I’m confident with the surgery I’ve had I now have the best change of lower recurrence rates.

[Chrissie66 in reply to Whoisthis]

It’s ok, I was just being nosey to be honest 😄

So much of endometriosis involves leaps of faith- yours was huge but you must feel totally vindicated. And I know what you mean about advocacy, although I am sure that most of my friends and family could live without the constant graphic descriptions of what’s going on in my nether regions 😂

I am extremely lucky with my gynae, I would trust her with my life. But I was diagnosed in 1992 and it horrifies and saddens me that generally speaking the NHS don’t seem to have made much progress across the whole board. And they must be frustrated that they don’t get the funding or even exposure around endo. I’m sorry that you’ve been on the receiving end (or not) with the NHS but so glad that you finally got the result you needed 😊 x

[Watedaha in reply to Whoisthis]

Yes please 😊

[Whoisthis in reply to Whoisthis]

“Pouch of Douglas”