Endo not showing up on CT or Ultrasound... Has this happened to you?

[Sabrina52]

If you'd like to read my previous post, it has a lot more about why my doctor and I suspect that I have endomentisosis...

I had a ruptured ovarian cyst in June and had an ultrasound and CT scan, my doctor said that there was no mention of endo on either of the reports from these scans. I'm going on birth control for 3 months to see if it helps and my doctor said she would possibly consider a laparoscopy in a few months depending on how I respond to the birth control.

Unfortunately my doctor is moving out of province and is referring me to a new doctor and said that it will be up to her to decide how she would like to go along with things.

I am nervous because as someone who also has fibromyalgia, I am used to other doctors dismissing my pain. I even went to urgent care with what I suspect was another ruptured cyst, and the doctor didn't do any tests or anything, all he said was I don't look sick (by this time it had started about 7 hours before and the pain had subsided) and told me that my bowl may have twisted and to take some stool softeners...

Anyhoo.. I'm just nervous that this new doctor will see that endo wasn't found on my CT or Ultrasound and just keep me on birth control with out actually investigating whats going on. I've heard that birth control can take away the pain of endo but still allow it to progress and women have gone years while the endo had progressed and a lot of damage was done. I'm only 20, but fertility is very important to me.

Have any of you had scans that didn't show endo but when it came to the laparoscopy actually found endo?

[weekari]

Sorry to hear about what you're experiencing, it sounds stressful.

Clear scans really mean nothing. I had a clear ultrasound (well, they just found 2 large fibroids) and a clear lap, just over 2 years ago now. I was discharged but continued with terrible symptoms, mostly disabling chronic fatigue, back /hip pain and abdominal pain. I was eventually seen by orthopaedics and had an mri which has shown severe endo throughout my pelvis and endo cyst behind my womb.

I don't believe that I didn't have endo 2 years ago, just that it was less obvious and I don't think he had a thorough look. Now it seems that my endo has progressed extensively and I'm very angry that it's had the chance to get to this stage. My life has been so affected by it.

My advice is to trust your instincts. If you know something is wrong, just keep on going back to the doctors. I didn't do this, I just gave up and went to alternative treatments to manage my pain, which helped but didn't prevent the development of the endo.

It does seem to be the case that if you're young and want to preserve fertility, they are much less keen on surgery as surgery, even exploratory can cause internal scaring which can affect your fertility. There's no perfect outcome in afraid.

I'm guessing you're not in the UK?

[Sabrina52 in reply to weekari]

I’m so sorry it took so long to find out what was going on! Thanks so much for your reply! And no... I’m in Canada 😂☺️

[Holleymuzz]

None was found on any of my scans or mri. They thought my lap was going to be quick because of this but was in operation for over 3 hours due to endo being all over pelvic walls, rectovaginal and rectum x

[Sabrina52 in reply to Holleymuzz]

Wow I’m really glad that they ended up finding out what was going on!! That’s too bad

I wonder why they use these scans if it doesn’t show anything for a lot of women. I understand it’s less invasive, safer and easier than surgery but it’s unfortunate that women are told that they are fine according to these scans only to find out they aren’t years later, when it’s progressed so much more

[weekari in reply to Sabrina52]

My endo was discovered on an mri. If its deep and/or severe then it can be seen. I think the scans are often used to rule other things out and check for any masses.

I'm now being seen by a specialist centre and they're used mri & ct scans to plan my surgery, so they must be helpful for something.

I think ultrasounds don't really show too much though. But they're cheap and very easy to do.

[Peren]

Nothing was found on my scans or MRI and I had endo everywhere - bowl, bladder, all over pelvis, rectovaginal endo. Scans reallh don’t give a picture. Ovarian cysts tend to show up well but I have deep infiltrating endo and didn’t even show on mri. I would always push for a lap even to rule it out.

[Alarna]

Endos dose not always show up on them it did not for me