Endometrial hyperplasia

Hi RuthieSun,

Thanks for reaching out to us here at the Macmillan Online Community. I’m sorry to hear you are feeling worried by this recent test result.

It’s reassuring that your Consultant has referred you for a hysteroscopy (camera test into the womb) as that is the only way they can definitively establish a diagnosis of endometrial hyperplasia (thickening of the womb lining). The hysteroscopy will allow for a biopsy of the tissues there and this in turn can tell them if there any changes to the cells that need further investigation. Usually this thickening is a sign of hormonal imbalances which can be caused by a number of things. The doctors will be looking for signs of further changes to the cells during the hysteroscopy and biopsy and it is this factor that is important in establishing if anything worrying is going on or not rather than the exact thickness of the lining of the womb.

The Royal College of Obstetricians and Gynaecologists publish the guidelines for the Management of Endometrial Hyperplasia and I think you’ll find this very useful. It succinctly summarises the evidence base for the way this is managed and details all of the papers used to form the guideline in the reference section at the end.

I hope this is helpful. Please feel free to reach out to us again if we can help with anything further.

Kindest regards,

Kirstine – Macmillan

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf/ BG

Thank you. This is very helpful, and thank you for giving such a clear and non-patronising answer. I think this may be the paper I already read, however. Are there any other good papers, for instance from the US?

Thank you. 

 Hello again,

I’ve already done the basic research as I said, and I understand what a hysteroscopy is (have to say I don’t find it reassuring at all that I need one, but I think I know what you mean!) and I also understand what endometrial hyperplasia is, with and without atypia.

I understand that EH may or may not be accompanied by atypia.

However, I still have no context on whether 7mm is a bit too thick or a lot too thick. I am not overweight, not on HRT and don’t have any of the usual reversible risk factors.

What’s bothering me here is that even if it’s EH without atypia, they will still want to bring it down and how will they do that because I’m not overweight and not on HRT. I understand they will try progesterone and if that doesn’t work, the next line is hysterectomy.

But that seems drastic as a preventative if there is no cancer and  no atypia. Even if there are atypia, but no actual cancer, why do they recommend hysterectomy as a first line treatment? Why not do  watchful waiting?

• I’m surprised they don’t monitor, as with prostate cancer? It seems odd to use such a drastic operation as a preventative - presumably women are having major surgery who might never have got cancer.  Now, I can see that you might want the op just for peace of mind. But I’d like to have a fuller picture of the reasoning and the risks before potentially going that route, especially if there is EH without atypia. 

I’m trying to find out how the 4mm cut off was established (I believe it was 5mm until recently). Also, has anyone studied endometrial thickness in asymptomatic women? As in, maybe there are loads of asymptomatic women walking around with more than 4mm perfectly happy, no cancer, but no-one knows because they’re not being tested. 

You'll probably say don’t get ahead of yourself but you need to research and think ahead in advance, otherwise you just get swept along in the process. If you’re not prepared you feel paralysed by fear and don’t think of things. That’s why I’m trying to get to the bottom of all the angles in ahead of time. 

thanks! 

Good morning RuthieSun,

Thanks for coming back to us. I can try to offer you some further sources of information to read but your Gynaecologist will always be the most qualified person to discuss this with.

Guidelines and recommendations are usually based on a large number of studies that have been carried out to high calibre and the data scrutinised for robustness. It can be misleading to look at single studies or papers as their results may not be an accurate reflection of the sum of information available. Established guidelines have combined all of the best quality information that we have to date on their given topic. The science is always evolving though as you know and the data can be updated and replaced over periodic reviews.  

Another source of high quality information is in a well constructed literature review. These look at the summary of the evidence from a large number of sources and can often make recommendations based on this collation. We have access to an American website called UpToDate that carries out regular literature reviews of the most up to date research on any given topic and doctors will often look at these recommendations as well as local guidance. Because of the way our access to this database is licensed I cannot provide you links to their articles on this platform. However, if you wish to be emailed separate copies of their pages then please call us on our Support Line. We can arrange to have those sent to you directly by UpToDate after establishing the necessary permissions, data protection and privacy issues. They go into more detail about the statistics that have informed the guidance to offer the interventions you mention in order to prevent development of endometrial cancer. The pages you may wish to request from us are:

 “Endometrial hyperplasia: Clinical features, diagnosis, and differential diagnosis”

and:

“Endometrial Hyperplasia: management and prognosis”

and:

“Endometrial carcinoma: Epidemiology, risk factors and prevention”

and:

“Overview of the evaluation of the endometrium for malignant or premalignant disease”

The World Health Organisation reclassified the way that endometrial hyperplasia was categorised in 2014. You may find this article of interest in its explanation of this. The key consideration is on the presence or absence of atypia (abnormal cell changes), and less about the thickness of the lining. The thickness of the lining may be an indicator that doctors use to progress to the hysteroscopy, but in itself is not sufficient to inform best treatment.

As always with healthcare choices, the doctors can make the recommendations to you based on the evidence base and guidelines, but the choice will be yours about whether you wish to take those options.  

The literature reported in UpToDate seems to suggest that less than 10% of ladies with atypical endometrial hyperplasia may progress to an endometrial cancer. The management of this is of course dependent on the persons preferences and often guided by perceived risk. If that person has low risk factors for progressing to an endometrial cancer then watchful waiting can be an option. However, treating with progesterone can reduce risk in other ladies, and hysterectomy is considered to be definitively curative for endometrial hyperplasia and thus preventing cancer being a possibility. How this is received by different people will vary and for some it might feel like the best option for them. Comparing this option to the way prostate cancer is managed is not a good comparison as they progress at very rates, and carry significantly different disease burdens and side effect burdens following intervention.

They further mention that thickness of less than 4mm is unlikely to be cancer, and that the frequency of endometrial cancer becomes increasingly more frequent as the  thickness approaches 20mm (which was the average womb thickness in a study of 759 patients that had a diagnosis of endometrial cancer).

I’m not clear on the issue you raise regarding the 4mm versus the 5mm but your doctor should be able to shed some more light on this I hope. I suspect that data is mostly available from ladies who have presented with symptoms such as postmenopausal bleeding rather than asymptomatic womb lining thickness.

We’d be happy to chat this over with you and arrange for those pages to be sent if you’d like to call us.

Best wishes,

Kirstine – Macmillan

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref KDf/ SMJ

Hi there, thank you so much for this very detailed reply. I appreciate the time and trouble you have taken. Which number do I need to ring, just this one you provided? 0808 808 0000 

Bless you. 

Sorry, the WHO link doesn't work - is there another one please? thanks 

Oh, I'm sorry about that. It seems to work from this end. You could try pasting this into a google search and it may come up? Fingers crossed. 

doi: 10.1055/s-0034-1396256

That has worked - thank you! Do I just phone the 0808 808 0000 number to obtain the Uptodate material please? 

thank you 

Yes - that number is correct.