Endometrial hyperplasia

[Loobie12]

Hi all, I just discovered I have something called endometrial hyperplasia, essentially a thickening of the enod cells, which has dangerous potential. Gyno wants me to come off the oestrogen patch straight away but I’m terrified. I had such awful anxiety and depression before I went on HRT and can’t bear the thought of it happening again. Has anyone been through this? Is there any possibility or staying on some level of oestrogen? If not any advice and support on coming off it would so appreciated.

Can you give a bit more background to this?

How was this thick lining discovered - and are you in the UK ? Have you had a biopsy? How thick is the lining?

A thickened lining is not cancer. It can become cancerous in time. But most hyperplasia is not cancer.

What type of hrt are you on? Have you been using progesterone as prescribed with the estrogen?

What's the plan now? Coming off HRT isn't the only answer. If that it all you've been told, that's not right.

Depending on the thickness of the lining, you can still carry on with HRT but the Mirena coil is a treatment for hyperplasia.

Thank you for you considered questions. No details other than a letter saying I have it. No clarification if it’s simple or complex hyperplasia, just to stop oestrogen (in fact my prescription was cancelled). I’ve booked a risk versus benefits conversation with the gynaecologist to determine if I can stay on oestrogen, reduce the level, or least gradually reduce before stopping. Any other thoughts or suggestions much appreciated.

They can't tell what sort it is (simple, complex) without a biopsy.

It also depends on what sort of HRT you're on- what are you using?
Are you using both hormones daily or on a cycle?
Why did you have a scan?

Are you in the UK- it's just what you describe wouldn't usually happen like this. It's more usual to take a sample sample with a biopsy at the time of the scan or with a hysteroscopy. And then have a full consultation over what happens next.

Hi there, I had a polyp removed so a biopsy would have been taken at the time. All benign so that's good but change in cell wall (hyperplasia), that eventually could become cancerous if not properly treated - oestrogen feeds those cell, hence what is probably a very sensible diagnosis, just wondering if there are alternatives to coming off oestrogen completely but a conversation with consultant I guess. Thanks for your help.,

How old are you? And have they established whether you are post menopausal?

I had to come off HRT, oestrogen patch and Mirena coil, suddenly due to breast cancer diagnosis. I was dreading it but was post menopausal ( blood test). Apart from one or two mild hot flushes I was fine. The mood swings I’d been experiencing prior to starting HRT didn’t reappear and overall my mental health has been fine.

I take hormone blockers so I don’t even have post meno levels of hormones. I do think that post menopausal is being painted as a “disease” rather than a normal state. A small number of women do suffer beyond the menopause, and many women suffer through peri and menopause itself. There are health advantages but many are still to be proved longterm. However there are also health risks such as endometrial hyperplasia, breast cancer and accelerated growth of fibroids that are footnotes currently in the risk assessment of HRT. I had rapid enlargement of fibroids due to stimulation by HRT and they cause severe sciatica. Since stopping HRT the sciatica has gone. I was referred to gyni when they couldn’t find any problems with my spine and gyni confirmed that fibroids were a common cause of sciatica in women.

The fear of breast cancer or sciatica returning far outways the other potential risks of a life without HRT for me. The main reason I started taking HRT was for muscle and joint pain, it had no impact on those symptoms. Luckily the type of breast cancer treatable, endometrial cancer is not as easy to diagnose and treat, it’s one of the silent cancers often symptom free until it’s at an advanced stage. HRT is an elective treatment, although at times it may feel like a life saver you can live without it and there are other treatment for specific symptoms. Those of us who have specific health conditions that mean we can’t use it can take other medications if necessary.

Is Mirena coil an option for you?

I was diagnosed with this and had the mirena coil fitted, which reversed it.

Good you've updated.

I'm still not clear if you are in the UK or US?
One reason was you aid 'gyno' which is often used in the US.
It's very poor that you've not been given much information and you say all you're getting now is a phone call to discuss this.

You should have a full report of the biopsy- the thickness of the lining, the type of cells and the treatment plan. (which cannot be just stopping hrt.)

As other posters have said, there's so much more we'd need to know to help.

It seems you're not being told anything. You should have given full consent for a biopsy, and it ought to have been explained.

If you have had a biopsy you need to know if it's simple or complex hyperplasia.
'Changes' would suggest your biopsy has shown atypical cells.

You also need to ask why you've developed hyperplasia if you've been using HRT as prescribed.

What HRT do you used? You've mentioned estrogen but which progesterone do you use as well? Are you peri or post meno? Do you use the progesterone daily or on a cycle?

I don't understand the lack of information you've been given.
There is no way you should just be having a call with your specialist - this needs a face to face consultation and a discussion of all the pros and cons.

For information, women who have stage 1 endometrial cancer are able to use HRT again. So there is no reason why you need to stop your HRT if your hyperplasia is treated.

Do your own research on it- it's all online. Yes, estrogen makes the lining grow but a Mirena coil stops it.

The treatment is usually the Mirena coil and that means that you can probably use estrogen again when the lining is normal.

endometrial cancer is not as easy to diagnose and treat, it’s one of the silent cancers often symptom free until it’s at an advanced stage

@Crwysmam This isn't quite correct. What you have said applies to ovarian cancer, but not endometrial.

The first symptom of endo cancer is almost always bleeding outside of a normal cycle, or very heavy periods, or when post menopausal.

It becomes more serious if women ignore the signs but found early it's 100% curable.

The biggest risks for it are being overweight or smoking. The natural estrogen produced by women who are overweight (especially post menopause) is far riskier than the small dose of HRT.