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[Violetta808]

I’m 55 and my last natural period was four years ago. I began HRT in October last year and started spotting after two weeks. It is now a continuous bleed so my nice GP referred me. i just had the ultrasound results which show polyps, tiny fibroid and 13.5mm endometrium. So the next step will be a hysteroscopy to remove the unwanted stuff and do a biopsy (the gynae registrar actually tried to do a pipelle biopsy at the appointment but it was too painful). I’ve asked for a general anaesthetic for the hysteroscopy given my previous history of fibroid removal where the consultant who did the procedure very strongly recommended a GA, suggesting awake would be 'far too painful' (no kids, retroverted uterus) – so I'm not just being a wuss!

I feel like I’ve a fair bit to unpick. Is 13.5mm endometrial thickness really as alarming as it sounds? I thought the recommendation is it should be less than 5mm post-meno, but I found an old post on this site with a link to a paper suggesting between 8-15mm is acceptable while on HRT, even for post-meno. The registrar I saw last week said there were very differing views about this and no real consensus. She was very nice but her parting words were ‘don’t worry, nine out of ten times it’s nothing cancerous’. Hmm that makes a one in ten chance that it is then!?! Anyway I thought that stat was for post-menopausal bleeding when NOT taking HRT.

However I do wonder if I’ve woken up a sleeping monster by starting HRT in the first place and perhaps I should have just left well alone as my symptoms weren’t so bad compared to some. That said it has really helped me feel more ‘myself’ again, in spite of the bleeding. But it’s not been as simple as just sticking on a patch and forgetting about it.

Should I go for a Mirena while I’m having the procedure? I’m very unsure about having one but it does seem the best option for keeping the endometrium thin. I do worry about having it removed/replaced in due course, given my increasingly ancient, impenetrable cervix.

Also the registrar suggested I try decreasing the oestrogen (I’m currently on Everol 50 + 200mg Utrogestan) and maybe try a 25 patch instead and just see how I go.

So I’m feeling slightly ‘rabbit in the headlights’ and I’d appreciate any advice or reassurance from those who’ve experienced similar - I know there are many posts on this subject so apologies, also, for starting yet another thread!

[Northerngirl]

Morning Violetta808, your story doesn't sound too different to what I'm currently going through and many of the other ladies. Mine all began in October and I found out in December after an ultrasound  that  my lining is 8mm. Had bleeding, utis and blood in urine all since October. I finally had my hysteroscopy/biopsy on Wednesday 31st under GA ....I too had a failed pipelle biopsy.
I had been on HRT for about 10 years of trial and error until I thought I'd found the one that suited me (oestrogen and utrogestan). I stopped HRT immediately when they told me what was happening as I knew they would say stop for a while anyway.  I have been pretty anxious,emotional and teary, but not sure if this is the threat of cancer or lack of HRT to be honest.
I think you just need to decide for yourself what will give you peace of mind at least until these things are sorted out.
If I can be of further help please message me anytime.
A lot of the ladies on MM have been through this and will offer helpful advice as they have done for me and continue to do so.

[Violetta808]

Hi Northerngirl, thanks for replying and for your support. I'm really sorry that you are going through this awful, drawn-out experience.

I read through some of your posts and it’s appalling that you’ve had to wait for so long to have the investigations done, on what should be a two-week pathway, and some of the things some of the doctors have said to you are the absolute opposite of helpful and reassuring. No wonder it’s triggered your anxiety. But I’m glad you’ve had the hysteroscopy done at last.

I am absolutely no medic but your risk factors do appear to be low. You have had children, and there were no polyps, which I understand are the things that can sometimes turn nasty. You’ve been on quite a low dose of oestrogen recently too. I know that probably doesn’t help much but it’s just my two penneth. Could the blood in your urine be from the UTIs/VA rather than anything sinister?

I think endometrial cancer while on HRT is rare (unless taking unopposed oestrogen, and for a long time), and I am trying not to worry too much, but of course it’s there lurking in the background. I just want the procedure done asap now. I do think it's crazy they don't offer twilight sedation or even Entonox for hysteroscopies, and the choice is a GA or nothing for pain relief (apart from a couple of ibuprofen). Kind of brutal.

[Northerngirl]

Hi Northerngirl, thanks for replying and for your support. I'm really sorry that you are going through this awful, drawn-out experience.

I read through some of your posts and it’s appalling that you’ve had to wait for so long to have the investigations done, on what should be a two-week pathway, and some of the things some of the doctors have said to you are the absolute opposite of helpful and reassuring. No wonder it’s triggered your anxiety. But I’m glad you’ve had the hysteroscopy done at last.

I am absolutely no medic but your risk factors do appear to be low. You have had children, and there were no polyps, which I understand are the things that can sometimes turn nasty. You’ve been on quite a low dose of oestrogen recently too. I know that probably doesn’t help much but it’s just my two penneth. Could the blood in your urine be from the UTIs/VA rather than anything sinister?

I think endometrial cancer while on HRT is rare (unless taking unopposed oestrogen, and for a long time), and I am trying not to worry too much, but of course it’s there lurking in the background. I just want the procedure done asap now. I do think it's crazy they don't offer twilight sedation or even Entonox for hysteroscopies, and the choice is a GA or nothing for pain relief (apart from a couple of ibuprofen). Kind of brutal.

Thanks for your support ....I've sent you a DM

[bluemczoo]

I’m really sorry you are going through this, I understand how worried you must be. How long have you been on 200 mg Utrogestan? I think when we tinker with hormone levels, it can cause spotting/bleeding and this can go on for weeks. I have a thickened lining too and have had bleeding on/off for a few weeks. I have my Hysteroscopy/ biopsy on Friday. I fully believe though, it is because I was not absorbing progesterone properly- the pharmacist gave me a different brand and all symptoms coincide with this. Back on the old brand and bleeding has stopped (so far). We will see what they say on Friday but fingers crossed. Maybe having the coil fitted might be good for you, to keep that lining thin, rather than oral progesterone.
If you phone ahead regarding hysteroscopy and pain, they may have options available for you. I have been told to take my pain killers an hour beforehand, they will have gas and air available. I had one of these procedures years ago (recurring miscarriage), uncomfortable but not so bad. Lots of luck, and hugs to you

[Violetta808]

I’m really sorry you are going through this, I understand how worried you must be. How long have you been on 200 mg Utrogestan? I think when we tinker with hormone levels, it can cause spotting/bleeding and this can go on for weeks. I have a thickened lining too and have had bleeding on/off for a few weeks. I have my Hysteroscopy/ biopsy on Friday. I fully believe though, it is because I was not absorbing progesterone properly- the pharmacist gave me a different brand and all symptoms coincide with this. Back on the old brand and bleeding has stopped (so far). We will see what they say on Friday but fingers crossed. Maybe having the coil fitted might be good for you, to keep that lining thin, rather than oral progesterone.

Hi Bluemczoo and thanks.

I’v been on 200mg utrogestan since early January. The GP swapped me from Everol Conti to try and stop the bleeding. It seemed to work for a couple of weeks but then everything started up again. The gynaecologist said most of the bleeding will be due to the polyps.

I read your post about your change to from utrogestan to the generic micronised progesterone, and all the replies from others having exactly the same issues with bleeding. Maybe there's something in the capsule coating or carrier ingredients that interferes with absorption?

The more I think about it, the more the Mirena does seem like the best option for me.

If you phone ahead regarding hysteroscopy and pain, they may have options available for you. I have been told to take my pain killers an hour beforehand, they will have gas and air available. I had one of these procedures years ago (recurring miscarriage), uncomfortable but not so bad. Lots of luck, and hugs to you

Really sorry to hear that you've had recurring miscarriages. I hope your hysteroscopy goes very well and as pain free as possible on Friday.

I have the date for mine now, and it's under GA so I won't feel a thing. I reckon I could have got through it on gas and air/Entonox, but that particular hospital doesn't offer it for hysteroscopy, and I did ask. So it's all or nothing.

I've never given birth but when I had an excruciating broken bones incident a few years ago the paramedics gave me gas and air and it was *amazing*. I get why people might abuse it for recreational purposes.

[bluemczoo]

Thanks  and best of luck to you for your procedure x

[Violetta808]

An update: I had my hysteroscopy under GA this morning and it all went very smoothly and I’m now back home and feel fine - just quite tired.

However, the landscape on my gynaecological journey has changed… I was expecting to have a polyp removed and Mirena fitted, but instead of a polyp they found three submucosal fibroids ranging between 2 and 4cm, so they just biopsied everything and didn’t fit the Mirena.

The consultant said the endometrium looks normal and healthy for post-meno and thinks it is extremely unlikely there will be any dodgy pathology. So that’s reassuring.

But in the meantime I’m to stop all HRT 😔 (though am allowed to use external Ovestin, thank goodness).

So, no polyp, nor 13.5mm endometrium (I literally have no idea what they actually measured on the ultrasound to get this figure!!)

But the fibroids are an issue. They have probably been there a while, hibernating and causing no trouble, but as soon as I went on HRT four months ago the oestrogen woke them up and they started bleeding. (Honestly I am so sick of the constant bleeding).

The consultant said because there are three of them, and my endometrium is quite thin (normal post-meno), removing them safely might be quite difficult. Hysterectomy was mentioned (am not even going think about that option at the moment!)

Or I stay off HRT, do nothing and they probably go back to sleep.

But that means I might turn back into a tired, dried out, headachey, sad old lady, and I so don’t want that… 😞

Anyway sorry for the essay, and maybe I shouldn’t be oversharing all this so soon after a general anaesthetic! But thanks for reading this far.

EDIT - rookie question - as I’ve stopped both oestrogen and progesterone now, will I get great big withdrawal bleed?

[Northerngirl]

Glad everything went ok and now you're back home resting. It makes you wonder where they get all this information from when they do the tvs.
I would say take your time as there is no hurry to make any big decisions at this point. I stopped my HRT as soon as I had my scare in December and luckily have so far been ok so I'm staying off it for now.

[shrosphirelass]

Violetta808 is there anyone you can talk about this with and discuss possible options. Does your GP have someone who specialises in women's health, a nurse or GP?

Get some rest and glad you are feeling ok.

[Violetta808]

Thanks for replies Northerngirl and Shropshirelass. I feel bright as a button today and fully recovered.

I’m lucky that there is a wonderful meno specialist at my GP’s who is very supportive and takes time to explain everything. I’m going to see her as soon as I get my biopsy results to discuss options.

I’m none the wiser this morning though. I have just read my discharge note written by the registrar. It says ‘3 x submucous fibroids’ … ‘suitable for TCRF’ (transcervical resection of fibroids).

But why did the consultant say they’d be too difficult to remove? Or why didn’t he just pick one of them to remove yesterday while I was in theatre? Then I’d have time to heal and only two left to worry about! So many questions.

I have to say the care I got was exemplary - I felt incredibly safe and well looked after.

However some of the communication was less than ideal. The registrar came to see me moments after I’d woken from anaesthetic and had just had a dose of fentanyl for cramping.

The conversation I remember was:‘blah blah 3 fibroids blah no polyp, no Mirena blah various options including Myosure but you’d have to be awake, or hysterectomy.’
‘Oh gosh that’s a huge operation. Would you remove ovaries and cervix as well?’
‘Yes we can do that’
Huh?🤔

So then just before discharge the nurse mentioned I’d been informed that I’d need to stop HRT immediately. I swear the registrar didn’t tell me this - I may have not heard it, or forgotten in my woozy state, but honestly I don’t think so.

After some back and forth and phone calls by the very helpful nurse the consultant who did the procedure came to talk to me. I’d not met him before I went into theatre. I have to say he was very nice and extremely professional though.

So  I have more questions than answers at the moment. I’m just going to get on with life until I have results and more information and a follow up.

I’m an articulate, intelligent, professional, grown up boss lady ffs!!! And yet I still have no clear idea of what is really going on.

[Jules]

They shouldn't give you info when still under the effects of sedation or anesthetic.  They gave me endoscopy results whilst rousing me from sedation and I was the same. And I also feel the same whilst in the nhs system, like I'm at their mercy and lost my brain

[Hurdity]

EDIT - rookie question - as I’ve stopped both oestrogen and progesterone now, will I get great big withdrawal bleed?

Only if your lining has built up while taking continuous combined HRT, ie if it has thickened. Since it's a week since you posted that, you will know by now if you have bled but in case anyone else was wondering. A withdrawal bleed ONLY  occurs if there is lining to shed, otherwise there should be none. Not sure about fibroids though - whether cessation of conti HRT will cause bleeding in a woman who has fibroids, even if the lining has not thickened?

Hurdity x

[Violetta808]

EDIT - rookie question - as I’ve stopped both oestrogen and progesterone now, will I get great big withdrawal bleed?

Only if your lining has built up while taking continuous combined HRT, ie if it has thickened. Since it's a week since you posted that, you will know by now if you have bled but in case anyone else was wondering. A withdrawal bleed ONLY  occurs if there is lining to shed, otherwise there should be none. Not sure about fibroids though - whether cessation of conti HRT will cause bleeding in a woman who has fibroids, even if the lining has not thickened?

Hurdity x

Hi Hurdity

Thanks for that very clear explanation. It makes sense completely that there won’t be a bleed if there’s not enough lining to shed.

In my case I had a light bleed after three days and am still spotting very slightly but that might well be all from the fibroids as they seem to behave differently from normal endometrium.

[PearlJ]

It resonated with me when you said you felt like you had awakened a sleeping monster by starting HRT. I’m feeling a bit similar. My symptoms were not as bad as some and were mainly mood related. 3 months of HRT and I’ve now started bleeding heavily and been referred for a scan. I haven’t bled in at least 5 years. I had a scan several years ago that showed very small fibroids so maybe it’s related but at the moment I’m kind of wishing I hadn’t got on this train!