Has anyone with endo previously had an all clear ultrasound?

[user2466]

Hi,

Ive been having pelvic pain, spotting, extreme fatigue, pain during pooping at certain times in my cycle along with other symptoms and for this reason my GP referred me for an US. Haven’t received the official results yet but the lady who did the US said she can’t see anything worrying.

whilst I’m glad that there’s nothing to worry about it does make me wonder what’s causing my symptoms and if it could’ve been missed? Like I said haven’t had the official report yet but she said there was nothing to worry about

thanks

Bump

DD2 had an ultrasound, as an initial test for her abdominal pain. It didn’t show her endometriosis. Only a laparoscopy did that!

Endo is very rarely seen on ultrasounds or MRI. Usually the only way to be diagnosed is laparoscopy. I think there are non invasive tests you can get done privately but I’m not sure how accurate they are.

I’ve had some clear and I’ve had it show up. I think it needs to be a fairly big mass to show on US. I had a 6cm cyst in my left ovary and they could easily see that a few years back.

the most recent US found nothing but I’m symptomatic again and have a lap booked next month. Will see what they find

How do I go about getting referred for a laparoscopy? Is there a criteria?

You have to be referred to gynae and they can put you on the list for a laparoscopy. If you can you might want to go private because the NHS lists are so long - it was going to be 2 years wait when I was referred in 2023!

They will also tell you to try birth control, which is annoying but it can help. I’ve got the mirena now and it’s been life changing honestly.

My dd is being investigated for this. Her ultrasound didn't show anything, neither did the initial examination at the GP. She was meant to have a follow up call Friday but it didn't happen, but she is hoping she can have the new mouth swab to see if that shows it up. She has been on Depo Provera for many years but had to come off it due to thinning pelvic bones. Very annoying as it worked so well in stopping her very heavy periods & pmt

Yes, mine never showed. I have endometriosis and PCOS - the PCOS showed up though.

Just because they cannot see endo on the ultrasound doesn't mean you don't have it. You need a specialist to read it. See if you can get referred for an MRI at a specialist women's health place. Again this is so you know someone qualified to look for endo is the person reading the screen.

Although the laparoscopy used to be the definitive test to diagnose endo it also puts you at risk of adhesions. My endo was diagnosed with a laparoscopy but that was over 20 years ago.

You can get a 2D and 3D transvaginal ultrasound at specialist clinics and they can diagnose endo/adeno from that. I would always advise a non-surgical route if at all possible.

Whatever is going on internally it requires investigating so it probably would be a referral to a gynae. As wait times are long you might want to think about self funding if you can. The 2D/3D scan would be cheaper than an MRI.

mine showed up on ultrasound and MRI but it was glaringly obvious - my ovaries were kissing and I had 6 endometriomas

What symptoms did you guys have? Would my symptoms warrant a gynaecology referral despite the all clear ultrasound? As mentioned, the doctor hasn’t told me it’s clear, it was the lady doing the scan that said ‘there’s nothing to worry about’ so still haven’t seen an official report yet

DD2 had:

1. terrible period pain. Sometimes she couldn’t walk - she could only crawl round the house
2. severe vomiting during periods - sometimes she just had to sit with her head down a bucket
3. severe ovulation pain - one time, she asked me to take her to A & E at 3 am, because she thought she could have appendicitis
4. frequent urination
5. considerable fatigue
6. loss of appetite, nausea and vomiting all the time. I used to have to ask her every afternoon, what she thought she could eat for dinner. She worked in a shop. Sometimes, she was in the middle of serving a customer and she’d have to rush onto the high street to vomit - because she didn’t have time to find out if the staff toilet was in use or not!

Every GP she saw, said it was normal period pain. I told her, I had never seen any woman in my life, suffer as much pain as she did. Eventually, I took her to the GP’s myself and insisted on a referral to a gynaecologist. The consultant said after ten minutes with her, she had all the classic symptoms of pelvic endometriosis. The theatre nurse told her, after the consultant removed extensive endometriosis, to change GPs!

The GPs told her the loss of appetite, nausea and vomiting were due to anxiety. Her boyfriend insisted on a referral to gastroenterology. The consultant gastroenterologist said, he could see the adhesions on her colon, which were holding food up, going through her system and it would cause her symptoms!

She made a formal complaint to our GPs and changed practices.

OP, if I were you, I’d ask my GP for a referral to a gynaecologist.

@LathkillDale I’m sorry your DD experienced that. Her symptoms sound very extreme and I’m glad she finally got help.

My symptoms aren’t as extreme as hers so I’m not sure if they’d refer me but these symptoms have been present for a while so I really just want to know now as I’ve had painful periods from when I first started. They’re not as bad since I had my DD via c section almost three years ago but the other symptoms are bad like the back pain, ovulation pain, fatigue, spotting etc

I had very heavy and painful periods, massive clots and I had a few instances of being in such pain I would vomit, terrible bloating on my period, was constantly low in ferritin and B12, I didn’t poo very often, ongoing lower back pain/spasms and latterly leg/groin pain and bladder pain when peeing.

I had many trips to the GP for pain and low ferritin over the years but was always just told it was normal. I didn’t realise the bowel issues and back/leg/bladder pain was the endo until I was diagnosed.

I was diagnosed on the NHS through ultrasound/MRI because they could see two endometrioma but I went private for my lap.

I was diagnosed with adenomyoisis after an US based on measurements they took

I have severe endometriosis (diagnosed via laparoscopy). It's not visible on ultrasound except for an endometrioma on my ovary. I'm also blessed with adenomyosis which is visible on ultrasound. Ultrasound is not an effective tool for diagnosing endometriosis.

My symptoms are horrible pain around 75% of the month with occasional fainting when it gets really bad, flooding during periods, issues with bowel movements, fatigue.

Even if the ultrasound is clear, I would push to speak to a specialist. Many of us have been where you are and have seen countless doctors before someone finally listens.

Mine showed up on an MRI.

Thank you.

Although I’ve never fainted I don’t actually throw up (as far as I can remember) do have nausea though to the point I’ll do a PG test most months as the nausea resembles being pregnant.

Hopefully the GP agrees to do a gyn referral although reading these comments I wouldn’t hold my breath especially as I’ve not passed out or anything

I’ve only had vomiting two or three times - it’s definitely not the norm!

@OneOpalOwl I thought this too, interesting how symptoms vary from one person to another

I do find it really interesting and I hope one day it will be studied properly. The NHS consultant I saw said there’s no correlation with severity of the disease to symptoms - some women will have a tiny amount and have awful pain, whereas some women will have deep infiltrating endo but have no or very few symptoms.

Also I’ve just remembered another symptom, I sometimes had pain during/after sex with certain positions. That was another one I didn’t realise was endo until after I was diagnosed!

I hope you can get some answers soon 🤞🏻

yes :) you’d need to have pretty severe Endo, with things inside all stuck together, to be visible on ultrasound. One needs a key hole surgery to be certain whether Endo is there or not.

The gold standard for diagnosis is a laparoscopy. It isn’t always visible on ultrasounds or MRI scans depending on where the lesions are or if you have endometrioma cysts or not. Mine was visible on MRI and ultrasound but my friends only showed up in the laparoscopy

@OneOpalOwl interesting that severity has no correlation.

Yes can defo relate to the pain during or after sex in certain positions too

Symptoms I had were heavy periods from being a teen. Period pain that went down my thighs. Shooting arse pain. Pain going to the bathroom. Feeling faint with period pain
then it all changed and I started getting random pelvic pain which had me sweating and shouting in agony when not on my period and specific ovary pain where I wanted to rip my ovary out. That got me a referral, diagnosed by ultrasound, confirmed by MRI, long long time in theatre with 2 surgeons