Confused after ultrasound scan

[Mindfullness4791]

I am 48 and I have had crohnic pelvic pain for 18 months but have had painful periods and left hand side pain for 20 years. Every uss I have had has come back clear.I had an uss a year ago that came back clear. I saw a nhs gynae in October who said she could feel Fibroids pressing against my bladder and bowel and put me on Prostap for 6 months. For 2 months my symptoms disappeared. They added in hrt and my symptoms flared up so badly that I was off of work for 5 weeks. My gp wasn't convinced it was fibroids as I was having classic Endometriosis symptoms - pelvic pain, bleeding from the rectum, urinary incontinence, constipation, pains down my legs, bloating, painful sex. All very debilitating. Morphine didn't touch the pain.

I then saw a private specialist who said that he didn't agree with the nhs gynae as my scans were clear and I would need a Laparoscopy as Fibroids wouldn't cause those synpoms.

As you can imagine, I was so confused and my gp agreed that I needed further scans.

I had my ultrasound yesterday and they found a Fibroid, the size of a large orange, at the top of my uterus. Pressing against my bladder! She said the previous ultrasound missed it, as they didn't scan the top of the uterus. She said (her words, not mine) that the only way to tell if I have endo, is if I have a Laparoscopy. I have been expedited for this. Please note, an experienced sonographer can diagnose Endo via uss. Has anyone experienced anything similar. I am just so confused now. Is it the Fibroid causing all of this and do I need a Laparoscopy after all?

Thank you if you got this far 💕

[Starry1977]

My ultrasound came back only with an endometrioma. I had stage 4 when I had a lap to remove it. A further MRI also showed extension disease. Could you request an MRI.

[dot7]

I was diagnosed with severe endo 15 years ago only because I had a cyst that needed removing and whilst doing the laparoscopy they discovered endo all over the place. I had already had multiple ultrasounds and an MRI and none of these showed any endo.

I went on 5 years later to have another laporoscopy as I was in a lot of pain and my previous diagnosis of severe endo made it harder to dismiss me. Again the ultrasounds (nhs and private) only showed an ovarian cyst. When I had the laparoscopy they found deep infiltrating endo and an endometrioma. Again nothing had shown on any of my scans.

Got referred to NHS Endo clinic a few years later and again ultrasounds showed nothing so I was dismissed despite my symptoms.

Saw a private gynae two years ago for severe pain and had an MRI, which showed cysts but no endo. I explained scans never show any endo for me, but he was very dismissive (blamed it on me being fat and offered me weightloss injections), so I stayed in pain for a couple of years due to exhaustion with the medical world. Finally decided to see another gynae privately, they did an ultrasound and shocker nothing showed up. But I advocated for myself to have a laparoscopy based on my symptoms and the fact I had to have surgery anyway by that point for a vaginal cyst, so as they were knocking me out can they do the lap too. They agreed tentatively and only because of my existing history with endo.

I had the lap last week and wouldn’t you know it I had endo on my uterus, ovary and behind my uterus, and my specialist agreed the laparoscopy was needed.

This long message is to say ultrasounds are not the gold standard test for diagnosing endo. I have had ultrasounds that have reported I have a bifurcated uterus when I do not. They are painfully subjective in there quality, and I have never had one done (even by specialists working in the NHS endo clinics) that have spotted a single dot of endo in me, despite me being consistently riddled with it when I have eventually had surgery.

So my point is in my opinion you should definitely get the laparoscopy because the pain is telling you something is going on, better to be sure and have something take a look then assume the scans are telling you everything.

[Mindfullness4791 in reply to dot7]

I'm sorry to hear the battle you have had to go through. It is so unfair :(Fingers crossed I have my Lap soon amd get some answers 🙏

[Haru17]

In all honesty, you can imaging forever, but it will never show an accurate depiction of endometriosis. Imaging just doesn’t show it. The only way to truly diagnose is a laparoscopy, and while they are doing that, if they find something they can often remove it.

[Mindfullness4791 in reply to Haru17]

This is true. Hopefully I'll get some answers soon 🙏