Adenomyosis misdiagnosis, baffled?!

[RoseStar]

I was diagnosed with adenomyosis privately 4 years ago after over a decade of heavy, painful periods. I had a laparoscopy at the time and it was clear for endo, had my tubes flushed and they told me to try and conceive as soon as possible because of the adenomyosis. Several NHS and private scans over the years have confirmed the adenomyosis since. Went to a new private gynae as was told my latest nhs scan showed an endometrioma but they weren’t going to do anything about it. He sent me to what he calls “the best endo scanners in the UK” who said it was just a corpus luteum and that I in fact don’t have adenomyosis either. He wrote to my GP with these results. WTAF?! Sooo I said how an earth have I been misdiagnosed for over 4 years and he said he couldn’t help with that because he didn’t diagnose me and he trusts these scanners in London. I’m completely baffled. Any advice?

[Chel91]

It's difficult to know what exactly is going on as I don't know all the details, but clearly something is amiss. First of all heavy and painful periods almost never come from nowhere, so unless they see fibroids or some other explanation then endo or adeno would very likely be the correct explanation.

I would go to a different doctor and ask for a referral to a specialist endo center. Have you checked the Nancy's Nook surgeon list, perhaps you can pay privately for a consult with one of those that do dual private / NHS and they can review symptoms and images (ask for a copy they belong to you), and refer you back to NHS wait list for surgery or treatment with an endo specialist (not regular gynae!).

Thirdly, I know there is some debate about this. But I have spoken to a few specialists myself who are extremely experienced and knowledgeable, plus my own experience, and endo (and adeno) is NOT 100% clear to make a diagnosis or an exclusion based on imaging alone. It's simply impossible in some / many cases. I have a very slightly bulky uterus, but they can't say 100% I have adeno, since the specific features are mild. There are other reasons for a bulky uterus. I also had clear (no endo) ultrasound imaging and clear MRI, but significant amounts of endo were found on several organs, but it was all very flat and superficial and patchy (but still caused me significant pain). Hence why not seen likely. The only way to exclude and treat endo is lap excision surgery. Good luck Xx

[RoseStar in reply to Chel91]

Thank you for your reply! Yeah he said superficial endo won’t show on a scan, so it would need a lap but agreed I have had a lot of surgery in a short space of time and I have a toddler to look after. Both the gynae that diagnosed me in the first place with adeno and the one that now told me I don’t have it are endo specialists at an BSGE-accredited centre 🙃

[Lindle in reply to RoseStar]

Be aware that Nancys Nook is totally unreliable for those in the UK. This is a site that promotes certain surgeons on no basis whatsoever and even the admins are clear they aren’t approved by them in any way. It is just based on a few good reviews with bad reviews not allowed. At the last count there were around 8 surgeons listed with most of the most highly skilled UK surgeons omitted and not allowed to be discussed. There are many bad reviews of some of ‘their’ surgeons on other platforms.

The sensitivity of imaging for adeno (so the chances of a positive report being correct) is high. There are changes seen in what is called the junctional zone of the uterine wall and when these are clear this does act as a definite diagnosis. But there can be differences of opinions when it isn’t very developed. Similarly diagnosis of endometriomas on imaging is treated as a definite diagnosis and has been the case for quite a long time but again there is always room for error. Even when sensitivity (and specificity - chances of a negative report being correct) is high it is never 100%. Imaging of endometriomas picks up the blood contents and can sometimes be confused with a haemorrhagic cyst which is a corpus luteum cyst, as they are blood filled. There is an ultrasound centre in London that is world renowned and specialises in detection of endo but rarely we have found they have made an error.

The best thing for now is to monitor symptoms, especially any that might suggest deep disease since that is usually associated with endometriomas, and have a rescan in a few months time. Haemorrhagic cysts will usually resolve on their own whereas endometriomas won’t do and the situation should become clearer with time.

[RoseStar in reply to Lindle]

Thank you! Yeah I was diagnosed with “mild” Adenomyosis consistently through ultrasound with one of the results saying “At the scan it was revealed that she has a bulky anteverted mobile nontender uterus of 84x65x44mms with some adenomyotic obvious changes which include striations and small intra myometrial cysts.”

My NHS scans in May 2023 and February 2024 showed the same size “Endometrioma” on my right ovary. I get pain around my right ovary, right low back and down my right leg and the scan was painful in that area. That may be the ultrasound centre I went to that’s world renowned - they said it was a corpus luteum cyst. So all I can assume is that for all of those 3 scans, I happen to have had a corpus luteum cyst that’s resolved and grown back 3 times. All very strange if you ask me. Sick to death of women’s health to be honest

[Lindle in reply to RoseStar]

Endometriomas are almost always associated with deep endo and the most common location by far for deep nodular endo is the uterosacral ligaments. A significant fact about this is that it will usually show on scans as thickening of the ligaments without an obvious nodule being seen. We still know little about the origins of endo but there does seem evidence that this type of endo can arise within a structure and grow outwards rather than from the outside in which is the common perception of deep endo.

Typical symptoms of US ligament endo are lower back pain, leg pain and pain with sex. So it seems very much like an endometrioma can't be ruled out no matter who has done scans. Do you have copies of all the scans you've had to see if US ligament thickening is mentioned?

[Chel91 in reply to Lindle]

Have you got a better suggestion for OP? Nancy's Nook does in fact allow negative reviews (but only privately). They do for a fact remove surgeons when too many bad reviews, or a change in their practices happen when they become aware of this. Nancy's Nook is not a discussion board, it's just a list of information and studies, with a file list of surgeons that was created through Word of Mouth + Nancy and her team trying their best to do due diligence. The team try to ensure that the surgeons values / practices align with their understanding that excision surgery is best practice. It is constantly updated, and the head of one of the BSGE Endo Centers is on the list. Obviously all the surgeons trained by him / work with him are not, and may be fine options too, but Nancy can only be made aware through patient feedback.

Personally, I've heard many countless bad reports of UK surgeons, including BSGE Endo Centers. Some clearly are worse than others, but there is no option about discussing this on this forum. If there is a better place for OP please do share as this can help her and many women (hence why personally I'll keep sharing the Nancy's Nook info). It was life-changing for me! xx

[Lindle in reply to Chel91]

Yes there is a far better UK resource where honest feedback is allowed and not decided by an American retired nurse. I'm very aware of what that group represents and have multiple screenshots of Nancy's comments including that her surgeons aren't vetted in any way and it isn't allowed to discuss any of the other outstanding surgeons not on her list, which is not constantly updated and has pretty much remained the same for decades. One recent addition, head of a BSGE centre, is giving the most damaging incorrect information on other social media platforms.

[Chel91 in reply to Lindle]

My experiences have been totally different with Nancy and her group. I appreciate you believe your FB group is much better, but maybe instead of denigrating a good endo resource, perhaps you can just add yours as another resource or an alternative one. We already have such few places to turn for information as endo sufferers. xx

[Chel91 in reply to RoseStar]

Totally crazy they can both say you don't have it, but also admit that superficial endo can't be seen on a scan. Superficial doesn't mean not significant, nor does it mean not painful. I was in agony with mine, and I had it on my bladder, appendix, uterosacral ligaments, recto-vaginal area, etc. I had it for about 20 years at the time of removal, but it had likely not changed much in that time, despite being found in places more associated with deep disease.

Every ladies experience with endo is different. Some ladies report having pain only for a few years, but the endo is extremely deep and severe. Others like myself struggle with excruciating pain for 20 years, and they find the endo is mostly superficial and the adeno is still mild. Don't let them fob you off. Are you hoping for a non-surgical treatment? Push for what you want and get all the options. You can always ask for a new GP, and ask to be sent to a different center it's your right xx

[poppy75]

Where were you diagnosed with adenomyosis? UCLH by any chance? I ask as they diagnosed me via ultrasound with it 5 years ago. Kindly told me no endometriosis (not ‘I can’t see any endometriosis’) , despite me telling them I’d had two surgeries to remove it, I’ve now suffered for 30 years and the last surgeon said it was so bad she had to leave a lot of it. To that the uclh sonographer said ‘no, she must have got it all. Our scanners detect everything’ (?!). Multiple women that week on the London Endo Facebook group had exactly the same experience. Fast-forward 2 years and I’m told by another hospital after mri no Endo or adeno. The Endo consultant there told me the fact I was on the progesterone pill could have got rid of adeno. Again - what? As for Endo, I told her mri and scans frequently miss Endo and a laparoscopy is the only sure way to see it to which she agreed. Honestly, you feel like banging your head against a brick wall with it all. I have no idea whether I now have adenomyosis or not. I’ve recently had an ultrasound and will be digging out all my past reports to check the measurements of my own uterus. You’re not the only one going ‘eh?’.

[RoseStar in reply to poppy75]

Oh man, it’s mental isn’t it! I was diagnosed in Oxford with the “mild” Adenomyosis (I think mine has never showed on MRI but consistently on several private and NHS ultrasounds in Oxford). I was diagnosed with a “suspected” Endometrioma on 2 NHS scans in Oxford but my latest scan at The Gynaecology Ultrasound Centre in London was where I was told no Adenomyosis and that the cyst was just a corpus luteum (although I thought they were supposed to disappear), so not sure why I’ve consistently had a small cyst on my right ovary for 3 scans over the course of a year 😩