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)

I got referred for a scan and they said I had adenomyosis.

who is “they”?

I can't give any real advice (apart from change your GP if at all possible!) but just to send best wishes💐. Women's health is so downplayed and ignored still, and being in pain is the worst.

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)

nonsense. Absolute nonsense

Absolutely NOT nonsense... almost every doctor I have ever seen acts like you are lying about whatever you have gone in with... there have been very few that have actually listened and actually helped. And this is a post asking for advice not for some stupid comment about different experiences you may have had

Obviously the proffessional that did my scan then the gynecologist that reviewed my scan... then also the fertility consultants at the fertility clinic 🤷‍♀️🤷‍♀️... who else??

Thank you so much for your kind response. This is meant to be a supportive forum but seem to just get a lot of replies from people with a problem out of nowhere 🤦‍♀️. I agree about women's health. My mom suffered for years with fibroids and they wouldn't do nothing about it aside from try to give her tranexamic acid tablets... she ended up getting releif through menopause... lots of suffering and doctors visits before then though (and she did suffer very much).

Thank you again for your kind response.

The pictures will be on your record

you can ask the GP to ask for a re-report of the scan particularly asking about presence/absence of adenomyosis and someone will look at the images and issue a new report addendum answering the question

https://www.endometriosis-uk.org/jos-hot-topics-adenomyosis Try contacting their helpline (at the bottom) for advice on how to get your GP to take notice.

I'm sorry to hear of your experience OP. I can only echo, avoid this GP at all costs, is he part of a practice? Try to get one of the other partners. I wonder why he thinks all the other medical professionals say you have this condition? The cynic in me says he will 'believe' whatever the cheapest option is.

What's with all the bullying on this thread??

Hey thanks, I have the original letter of diagnosis too and it is on my NHS app. That is very interesting. I may just do that. Thank you.

Thank you. I haven't seen this doctor before so maybe he is not a permanent fixture there but I will certainly find out. Yes I feel like they want to say you don't have anything case closed... less work and money but it doesn't stop me being in pain and suffering.. I suppose it depends how much I am willing to fight

Oh thank you for that! I will take a peep now

So despite all this written evidence that you GP will have sight of… the GP says you don’t have it?

But the GP will have access to this and will have seen. In fact the consultant will have sent through the diagnosis to the surgery!

The latest scan report that this Gp has in front of him states you don’t have it?

He hasn't said the words I don't have it!

On the most recent scan results saying "No adenomyosis seen!"

And my diagnosis IS on my record, but my point was he clearly hadn't bothered looking on there!!!!!!!

And the consultant sent it to my old surgery who I was with years ago so yes he would have to dig through the last few years of info on there to find it, but NO, it wasn't sent directly to him because I wasnt with that surgery! Which I have already mentioned if you had bothered to read it all!

And they can't possibly say I don't have it because I have had 2 scans previous to that in different places done by different people with the evidence that I DO have it... I think 2 trumps 1! And it is attitudes like yours what I was talking about the Doctors being like! I have all the evidence I need and one thing I do NOT appreciate is people insinuating I am a liar! As that is one thing I am NOT! And do not have any reason to lie about it! I'd rather not have it but my absolute agony and horrific periods and evidence from 2 other reproductive/fertility doctors say otherwise!!

But the most recent scan, the conclusion of which would have been by the scanner and / or consultant, is telling him that no evidence that present.

All I’m saying is that it’s not the gp concluding no evidence

it is others, specialists.

What treatment did you have following the earlier diagnosis you had?

It's not a "conclusion" because the scan wasn't even for the Adenomyosis it was to investigate some pain I have been having since a polyp removal and an endometrial biopsy a year ago! The point of the scan wasn't to even look for that but that is what they have put in there and regardless of whether that particular scanner could see it or not it factually does not disappear. It gets worse with age (until menopause). 2 confirmations/diagnosis' at a private fertility clinic and by an NHS gynecologist at a hospital shows that it is MUCH more likely that this last scanner did not know what they were looking for or did not have the best equipment as they have only been able to recognise it on ultrasound properly the last few years and even that can be hit and miss even now. It is not that well known and alot of staff are not trained up on it! So as I said... much more likely that they do not know what they were looking at or the machine was not as high tech as it was done in the GP surgery building this time and NOT a hospital or a fertility clinic! I will be speaking to the GP regarding it but make no bones about it... it is not a question of IF I have it or not... I already have my diagnosis AND had it confirmed after too in a different place!

They never gave me any treatment because the only "cure" is hysterectomy and we have been trying for a baby. Other options that help mostly I cannot do because of trying to conceive also having a blood clotting issue.

I thought you said you’d done research?

there’s a number of very effective treatment options before a hysterectomy

Worth pursuing

I have! And AS JUST MENTIONED, we have been trying to conceive and I also have a genetic mutation which can cause blood clotting issues in pregnancies and with the pill! So please do your own research! There is nothing I can have and adenomyosis cannot be cured! Can only help keep symptoms at bay temporarily whilst taking contraceptions etc and very few places offer UAE but not really recommended when trying to conceive !!!