diagnosis

[LunaLucca]

Can endometriosis be diagnosed or dismissed by a scan alone? Thanks.

[Scme]

No , I believe good standard is lap . Prior to my operations nothing really showed up other than a small cyst on my USS and MRIs . It turned out I had stage 3 widespread Endo .

Hope that helps .

[Kirsty360]

Hi,When I read posts on the forum I feel I have been really fortunate... My endo showed up on a CT along with bilateral endometriomas, was told it was likely stage 4... I was booked in for surgery and had extensive adhesions removed an 8cm cyst and a 6cm one which where both drained, was given the official diagnosis of it being stage 4... But the op was a 74 week wait in total.

[Goiaba in reply to Kirsty360]

The scans will only show DIE, so if someone has stage 1, 2 or even 3 it will most likely not show, unfortunately

That’s why at the moment only lap with an endo specialist is the way to get an official diagnosis.

[Kirsty360 in reply to Goiaba]

Thats why I am extra grateful to have had it picked up on a scan as I know how many other females are dismissed, even if it's blatantly staring at the sonographers/drs on the images 😔

[MrsJEllis]

Hi lovely,

I got diagnosed with endo 2 weeks ago now via a laparoscopy. I had scans before this and it showed nothing. The only way they detected it was via the lap xx

[MD22]

Definitely not! This was used on me for years as my pain grew worse and worse, doctors saying there was nothing wrong with me and that it was all in my head. After years of agony and my pain becoming 24/7, a specialist finally did an MRI on me with vaginal and anal gel inserted. My GP looked at that scan and still said I was fine. However, luckily the specialist saw that I had Stage 4 Endometriosis, in which my bowel and ovaries were all fused to my uterus and it was growing into my back. This was further confirmed with a laparoscopy, which is the surefire way to know.

It was a lot of years before I realised how unqualified doctors had used scans to dismiss my illness and even with it so bad, they still couldn't see it on my scans, so don't be discouraged. You know your body, no matter how much they make you question. Also, some will tell you endometriosis won't grow if you are on hormonal contraception which is not true either. Just another thing that was used on me, then I got that special scan again and, shock horror, it was back lol.

Best of luck on your journey and keep faith in yourself ❤️.

[Emmy31]

I have had to fight for years to try and get referred to gynae and then push for further investigation. I used the NICE guidelines to help support me in getting an MRI scan booked from my GP whilst awaiting my last gynae referral.

My current gynaecologist is amazing, she has started my treatment due to my clinical presentation. I did have a large endometrioma previously which has helped in pushing that I likely have endo. My last USS has now shown changes which suggest Adenomyosis. Previous to this all my scan and MRI have been ok.

She has said the only definitive way to diagnose is a laparoscopy, which I am in the list for. So officially I don’t have the diagnosis as yet but it is strongly suggested that I have it. She has started treatment to aid my quality of life whilst awaiting surgery. Despite a few issues at the moment, this has helped massively.

[littlemisstaxi]

I was lucky where mine showed up on scans but it didn't show the severity of it and all the places it had grown. Mine has resulted in a hysterectomy only recently due to the other problems i have faced over the 25 years ive struggled. My daughter had multiple ultrasounds and transvaginal scans and nothing showed up. She decided to go private and had a laparoscopy this week which showed extensive Endometria inside her uterus. The gynae told her that they were unable to remove it because of where it is, and her uterus was so heavy they couldn't lift it. He said it weighs three times more than it should. She is only 25.

[Reethi19]

Hi, I had a thorough scan from a consultant radiologist who diagnosed endometriosis in 2 areas. I assumed that this was a diagnosis until recently and I was told I need a laparoscopy. The gynaecologist was very dismissive of the scan and said I probably don’t have endo as she couldn’t feel anything 🙄 I am planning on seeing a specialist privately. From what I understand from speaking to another person who also has the condition, some private specialists recommend a scan before laparoscopy given that it is quite invasive, However as others have said the laparoscopy is the gold standard in terms of making a diagnosis. Hope this helps a little x

[Rewe]

Hi there, my diagnosis came after US and MRI showed presence of endometriomas. They can't see anything else on my scans but I'm on a list for surgery and I guess there's a chance they'll see something. Word of caution though, ultrasound is so dependent upon the machine and the operator. I had one done the day before I had my appendix taken out and was told nothing seen on ovaries. The surgeon removing my appendix noted large bilateral ovarian cysts on the report, which is how I was able to pursue a diagnosis (after being fobbed off five years prior and told the day before that no gynae area issues). I paid for a private ultrasound and it was a good decision as even with those results in my hand, clearly showing endometriomas, the sonographer i went to for my nhs appointment downplayed it, told me they weren't likely to be endometriomas etc. Which goes to show the huge variability in scanning and interpretation. So I would say just cos a scan says there's nothing there, doesn't mean there isn't! If you have pain, there will be a reason for it. Good luck xx

[Kieraface]

I believe that only stage 4 DIE is diagnosed from a scan and adenomyosis. I have both and have been diagnosed via an MRI scan. You may find they are able to diagnose from there but gold standard diagnosis is a laparoscopy. So you may still have endo even if it doesn’t show on your scans x💛