Scan saying Adenomyosis disappeared?

[Missingpieces1]

Hi everyone,

A few years ago I was having lots of pain and bleeding between periods and periods were bad too. I got referred for a scan and they said I had adenomyosis. I had never heard of it at the time but researched it to find out about it. Last year I had a fertility scan and they said they could see the adenomyosis too.

Ive been having terrible pain in my right hand side of my pelvis since having a polyp removal and biopsy last year so I got referred for another scan (by a different GP as we have moved) and the scan has come back saying no sign of anything including adenomyosis and now my GP is talking to me like as if I made it up (he doesn't even know what adenomyosis is and put in my notes "says has adenomyosis" like im lying.

As I am sure you all know, adenomyosis does not go away and only worsens with age and believe me, I suffer worse than ever with it now.

What am I meant to do now when I have been told I have it from 2 different places (an NHS gynecologist [which IS in my medical records] and a private fertility clinic. This GP is so dismissive and now this scan added fuel to the fire by making him think it is not there.

I have a feeling the person who did this most recent scan just did not know what they were looking at because they did not take no where near as much time as the original diagnosis scan they took loads of pics and was turning me round and upside down and all sorts!

It is so frustrating because not only do I not have an answer to my pain but now they are trying to gaslight me into saying its not there (when it cant disappear and been diagnosed by scan from 2 different people/places before that.

I don't know what to do now any ideas?

Sorry for the rambling its just stressing me out this is why ai hate going to the doctors when most of them act like you are lying about everything (when I am nothing at all like that and hardly ever go docs unless I HAVE to)

OK!!!!

Adenomyosis can only be definitively diagnosed by examining the uterus after a hysterectomy, where the tissue can be analyzed under a microscope.

so it is possible that different specialists will have different view. The latest thinks - no evidence. The previous one did think evidence.

Perhaps go for a private scan? They will forward on to your surgery.

Either way…. If no treatment available for you, what would be the point anyway?

Hey there. So sorry you are going through this. No medical background but was finally diagnosed with endometriosis in 2017 at age 34. Since then have had 2 laparoscopy surgeries (cyst removal then fallopian tube removal), hysteriscopy for polyps, 6 rounds of IVF (9 embryo transfers).
I’ve probably had creeping up to above double digits now in trans vaginal ultrasounds and have also had MRI… my adenomyosis only showed up as we approached round 4 of IVF. My experience was some of it is down to the skill of the person scanning and diagnosing. A lot is done to where you are in your cycle as even now we know it’s there it isn’t always visible on scans but when I have any surgery done it’s always in the notes that my uterus appears adenomyotic. I hope this helps you as I know it can feel like you’re not believed/validated. Unfortunately a lot of it is coming across the right people who are skilled and know their s@@t
best of luck with it xx

Only treatments for it are hysterectomy and also a laser treatment that removes the lining but not the uterus - but this would mean you would be able to attempt to carry a pregnancy. Xx I have found my symptoms improve when I am induced into medical menopause (prostap) but that treatment itself has unpleasant side effect, impacts on bone density plus you need to take HRT as an add back xx

Yes I know thats the only way to get a definite diagnosis but obviously they are pretty confident in what they are looking at and as I said before one of my scans that confirmed it was private. I just don't want it becoming an issue later down the line if I do decide to start treatment etc

Hey! Yeah I have seen that too... not sure I have much time left to try that to be honest

I have adenomyosis and it was only found after 5 scans. The fifth scan was by a specialist trained in spotting endometriosis and she picked it up. Definitely change your GP, there's one at my surgery who has a particular interest in women's health and so it might be worth researching if there are similar in your area. Keeping pushing though

Hi! Thank you... yeah I will look into that.

I’ve just been diagnosed with the same thing, he was a student sonographer so I wonder if it’s a new thing they’re teaching, as previous scans have never shown anything (I’m 45 and peri, on HRT).

Very frustrating isn't it? Especially when GP's that don't even know what it is say you don't have it because it wasnt spotted on one most recent scan 🤦‍♀️🤦‍♀️

Was it a GP or a specialist that said this?

GP

And he interpreted the scan?
or he’s going on the basis of the specialist report?

He just got sent the report which (in short) said no fibroids, polyps adenomyosis (etc) seen. "Normal pelvic scan" apparently even with one of my ovaries being double the size of the other on there apparently lol (seen the report myself). And obvs had actual specialists see it and diagnose adenomyosis before and one even showed it me on a scan (seen it for myself) also had a hysteroscopy last year (camera inside the womb) and there were patches of it spotted then... so been confirmed on 3 occasions before that and one was actually by a camera inside me 🤷‍♀️. Guess he either didnt look at my records or just didnt want to take them into account

I had a hysterectomy 3 weeks ago due to Adenomyosis and Endometriosis. I’m sorry you are going through the pain and can totally relate. Can you afford to go and have a Private vaginal ultrasound at your local Nuffield hospital? The Dr who performed mine at the Nuffield is an expert at finding both Endometriosis and Adenomyosis and trains others at my local university hospital. She told me that many who perform these scans simply do not know what to look for and so it’s often missed?

Hi OP, I haven’t read the full thread. Am I correct in assuming your scan was an ultrasound? I would ask your GP to refer you back to gynae and ask for an MRI. An MRI is much more sensitive for picking up adenomyosis and is how my adenomyosis was diagnosed (Not sure they’ve ever picked it up on US, but it’s there). Whatever is causing your pain hasn’t been identified or resolved in any case, so even if he doesn’t believe you I don’t see how he can reasonably refuse.

I would also echo PPs suggesting you ask to be seen by somebody else at your GP practice.

Good luck, sending a handhold x

Hi, one of the scans I already had last year at a private fertility specialist was done by a gynecologist and she spotted it there too and its on the report from there. It was originally seen on scan in 2022 (I think). After bleeding and pain etc then had a scan at the hospital. I can believe exactly what you are saying as alot of the doctors I have spoken to haven't even heard of it. .. very frustrating.

Hi, thanks. Yes it was a transabdominal and transvaginal scan. Yes I think I will ask to see a different GP.

Same thing happened to my colleague. Scan 1 showed indication. Scan 2 didn’t show. Because they can only definitively diagnose post hysterectomy.

Hi, I have Adenomyosis and I was really suffering with extreme bleeding, pain, anaemia and repeated pregnancy losses and it took years for me to get a conclusive diagnosis.
I've not read the entire thread because some of the rude and antagonistic replies you were getting, were really riling me, but I was hospitalised repeatedly due to the issues above (I was finally diagnosed after losing my last baby 2 years ago and the sonographer actually said that it had been written in my notes but because I was seeing different medics etc it repeatedly got overlooked).

Desogestrel has been a wonder drug for me - I was literally told that it was a case of Desogestrel or a hysterectomy and I really didn't want a hysterectomy even though I won't be pregnant again (as I'm 48 now) and within weeks the Desogestrel began working to stop the excessive bleeds and it's also stopped the vast majority of the pain too.

I hope you get your resolution.

Shouldn't it all be in your clinical records, can you see your NHS records? If for some reason it isn't in your notes your new doctor is starting from scratch and if the scan he's seen says they don't see any problems then that's all they know. What sort of scan was it, ultrasound, MRI or something else?

Hi yes I know that you can only get a definite answer after hysterectomy but I had 2 scans from 2 different places/people (both gynecologists) who confirmed it and it was also seen on a hysteroscopy that I had done last yr by a third gynecologist who even pointed it out to the nurses and myself. So i'd say I think I can most likely safely say thats enough to say I have it.

Hi yes it is in my records and I can see it and so can the GP (if he bothers to look, which he clearly didn't)

Hello,

I am so sorry to read what you have been through, I myself have lost 6 and 2 of those I was almost half way there ☹️.

Yes some of the replies were like vultures wasnt they?

So glad that it works for you but, I would rather not have the desogesterol because I have a genetic mutation which puts me at higher risk for blood clots and I was advised not to go on the pill (they did say that that one is a slightly safer option but still a risk). Also we have been trying for another baby for 4 years (not sure it is going to happen again for us now as time is ticking and with adenomyosis supposedly getting worse with age I am not sure).

Thank you so much for your kind words. I really hope you managed to have a child at the end of all of that.

Did you point the gp to those records? As in look at the report dated xyz. If you didn't do it next time.