Need a diagnosis

[Argghhh]

Could an ultrasound scan show endometriosis?

[Jenn2022]

In theory it can. But it's not guaranteed. Mine showed I had a cyst, but it didn't show any of the other endo anywhere else. If I hadn't had the cysts I suspect I'd have been told there was nothing there

[Argghhh in reply to Jenn2022]

Thank you JennWe'll just have to keep wading through the process and hope to get some answers then

[Jenn2022 in reply to Argghhh]

Just make sure *if* it comes back showing "nothing" that when you talk to your gp you remind him that u/s aren't reliable ways of diagnosing endo, and that you have been on endo forums and talked to loads of women who had endo which wasn't spotted on an u/s.

[Argghhh in reply to Jenn2022]

Do you think it would make a difference if the scan was performed when the symptoms are at their worst?

[Jenn2022 in reply to Argghhh]

Honestly? Probably not. Ultrasounds are really designed to look inside the womb, and endo by definition is not inside the womb. So it's really hard to see it. You might be lucky and it shows up, but just be prepared in case it doesn't.

[Avourneen in reply to Jenn2022]

Ultrasuonds aren't designed to look inside the womb that is a hystoscopy, completely different scan.

[Jenova]

In my case, neither ultrasound nor MRI showed endometriosis. It is difficult to determine in the initial stages ( 1 or 2) if it is external. I had two cysts in both ovaries (this was exactly what was visible, but without histology it is impossible to say exactly what type of cysts you have), when surgeons began to perform surgery, they found foci on the intestine, bladder, ureters and in the abdomen. No ultrasound or MRI showed it. I have a third stage of the disease

[Argghhh in reply to Jenova]

Foci?

[Jenova in reply to Argghhh]

"Endometrioid foci", when endometrial cells "germinate" on other organs causing inflammation and impaired organ functions. For example, in a sigmoid lesion, there may be bowel obstruction and severe defecation pain, etc.

[Brambledoggy]

Not in my experience as the lesions can be really really tiny (and STILL cause diabolical pain) and be in areas not picked up via vaginal ultrasound. For example on bowel, bladder etc. I’ve had dozens of vaginal ultrasounds, examinations and only way my horrendous and debilitating endo was found was by laparoscopic examination. One so called male gynaecology surgical “expert” examined me with his hands and said he couldn’t “feel” anything but then upon surgery unearthed literally dozens of dotted around lesions, ranging from bladder, bowel, pouch of Douglas, uterine ligaments etc etc…..not sure his burning off by cauterising did any good whatsoever as the roots of the endo remained, only to return later in life and be twice as painful. Hope this helps. Nina.

[Avourneen]

Yes it can and does. MRI and TV ultrasound are now considered to be the gold standarad for diagnosing endo according to tehlatest studies. But you will need to see an expert scanner not just a normal sonographer with little knowledge of endo. I had an MRI and it showed up where all my endo was and really helped the surgeon with the operation. All good surgeons use one or the other. I think the women getting it missed here have probably had their scans done by generic sonographers. But it is true it is not guaranteed diaphramic endo for example is apparently really hard to spot on scans. My MRI was done by a specialist sonographer at Bham Womens hospital for ultrasound the best guy is meant to be prof Jurkovic in London. I'm sure there are other specialist sonographers who are really good someone at Southampton has been mentioned lots of times. SO find a really specialist sonographer not just the one your GP recommends who might not know anything at all about endo and try that if it comes back with nothing and you have symptoms do keeping pushing though because nothing is 100 percent.

[Argghhh in reply to Avourneen]

We're in Shrewsbury so there is not much hope of seeing a specialist in anything!

[Avourneen in reply to Argghhh]

Shrewsbury is not far from Birmingham only about 1 hour there is a massive womens specialist hospital there you can ask your GP to refer you there or there is a private place that does scans called heathlodge in Solihull (bit further away for you) they send the scan on to be read by the specialists at the womens hospital. They will see you withing a couple of weeks ,scan will come back in a week but MRI costs quite a lot. I think 5 or 6 hundred pounds when I got mine. But I think you need a gynae to refer you for this. Try getting too see a gyane locally and insist you need MRI.Good luck x

[PABA00]

In my case, it showed up on transvaginal ultrasound scan but not everyone gets lucky. And usually, ultrasound is the first course of action, sometimes they would go for MRI as well but it not guaranteed to be shown in these tests. A laparoscopy is what determines if you have it or not.

[laura98]

They seem to always refer for an ultrasound as the first step to investigation, so it’s probably just going through the motions. I’m waiting for a lap (have been for one year and had to go private to get on the list) and my ultrasound showed that my ovary is stuck to my uterus, which can be a sign of endometriosis. My consultant said that this may not have been picked up if the sonographer hadn’t tried to move the ovaries around during the exam, (which I don’t think they bother doing normally).. so it can, but also likely won’t pick anything up!

[Argghhh in reply to laura98]

That's useful to know. Thank you

[Brambledoggy]

1.5 Diagnosing endometriosis

1.5.1 Do 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.

Ultrasound

1.5.2 Consider transvaginal ultrasound:

to investigate suspected endometriosis even if the pelvic and/or abdominal examination is normal

to identify endometriomas and deep endometriosis involving the bowel, bladder or ureter.

1.5.3 If a transvaginal scan is not appropriate, consider a transabdominal ultrasound scan of the pelvis.

Serum CA125

1.5.4 Do not use serum CA125 to diagnose endometriosis.

1.5.5 If a coincidentally reported serum CA125 level is available, be aware that:

a raised serum CA125 (that is, 35 IU/ml or more) may be consistent with having endometriosis

endometriosis may be present despite a normal serum CA125 (less than 35 IU/ml).

MRI

1.5.6 Do not use pelvic MRI as the primary investigation to diagnose endometriosis in women with symptoms or signs suggestive of endometriosis.

1.5.7 Consider pelvic MRI to assess the extent of deep endometriosis involving the bowel, bladder or ureter.

1.5.8 Ensure that pelvic MRI scans are interpreted by a healthcare professional with specialist expertise in gynaecological imaging.

Diagnostic laparoscopy

Also refer to the section on surgical management and the section on surgical management if fertility is a priority.

1.5.9 Consider laparoscopy to diagnose endometriosis in women with suspected endometriosis, even if the ultrasound was normal.

1.5.10 For women with suspected deep endometriosis involving the bowel, bladder or ureter, consider a pelvic ultrasound or MRI before an operative laparoscopy.

1.5.11 During a diagnostic laparoscopy, a gynaecologist with training and skills in laparoscopic surgery for endometriosis should perform a systematic inspection of the pelvis.

1.5.12 During a diagnostic laparoscopy, consider taking a biopsy of suspected endometriosis:

to confirm the diagnosis of endometriosis (be aware that a negative histological result does not exclude endometriosis)

to exclude malignancy if an endometrioma is treated but not excised.

1.5.13 If a full, systematic laparoscopy is performed and is normal, explain to the woman that she does not have endometriosis, and offer alternative management.

[Brambledoggy]

This is copied and pasted from current National Institute for Clinical Excellence (NICE) which should clear things up.

[Argghhh in reply to Brambledoggy]

I shall definitely take the NICE guidelines with me. Thank you

[Pacotj]

I paid for a private ultrasound after unfortunately getting nowhere with gyn. It wasn’t able to detect any endometriosis however it did show up adenomyosis. It was worth the money to know these symptoms aren’t just in my head and often adenomyosis and endometriosis go hand in hand too.

[Argghhh in reply to Pacotj]

Can I ask if you've had any treatment that has improved your condition?

[Pacotj in reply to Argghhh]

Not as yet been on gyn wait list for 17 months thus far. The pill really made my mental health unstable though the symptoms did ease, at the moment I’m on norethindrone which I’ve to take the first 3 days of me period only, tranexamic acid, 30/500 cocodomol and 500 naproxen. With this though there are still days I have to call in sick as I’m unable to move and in excruciating pain.

[Heloo85]

Yes, of course! And in the next breath, no it can’t! It’s subjective! I’ve a nodule between my uterus and bladder that shows! I have a cyst on ovary that shows! It doesn’t matter that I have disease on scans though as it would appear it’s been seen for the last 5 years while my consultant took a watch and see approach! Even after the cyst on the left ovary abscessed, causing sepsis, so who knows 🤷‍♀️

It doesn’t even go on symptoms either it would appear, cuz been crippled for 5 years, complaining of worsening symptoms for them to be ignored 🤷‍♀️

Oh but at least I was put down for a hysterectomy! First told it would take around 12 months! Now at least 2 years 🤷‍♀️

Who knows anything about endometriosis and what goes through Drs heads? I don’t!

Get a referral through the choose and book system to see a gynea and pick a private hospital! It’s your quickest route to a diagnosis!

Best of luck xx