Scan showed thickened uterus lining ... what now?

[GlomOfNit]

I'm on HRT (have been for about 3 years, am 51, perimenopausal and think if I wasn't on HRT I would probably still be having the odd cycle) - currently 3x 0.5mg sachets of Sandrena and 2x Utrogestan capsules for first 12-14 days of my cycle, and I'm also trialing testosterone (Testogel, one sachet spread over 8 days). I've been on testosterone for about 4 weeks.

I was referred for a non-urgent scan last summer and for various reasons missed the appointment. I had been getting weird 'smelly' periods (can't really describe it but it smelled like off meat!) and a GP thought it was worth checking out. They stopped of their own accord and having missed the scan, I didn't rebook the appointment, but in recent months I've experienced some urinary incontinence (not massive, but a bit more than a stray drop at times) so another GP suggested I get rebooked for a scan, 'just in case'. In the interim, I finally got round to downloading the NHS 'Squeeze' app for pelvic floor exercises, and I'm using Oevestin cream. The annoying occasional dribble has almost stopped, hurrah!

However, I had the rebooked pelvic/internal scan a few days ago. Today (2 days after the scan) my GP rang me to discuss the results. She says I've got a thickened lining over what they'd like to see (7mm) and while it's not thick enough to send me off for a 2 week wait hysteroscopy, she's referring me to a gynaecologist who will assess whether that's what I need, or how to go from here.

I asked whether 7mm was significantly thickened, she said it was below 10mm so not too bad, but they wanted to see 3 or below. (I have no idea if the point in my cycle at which I was scanned makes any difference - scan was on 23rd and I would have had my 14 days of Utrogestan from the 1st, then started my withdrawal bleed maybe a couple of days after that course ended ... so I guess I was pretty much mid-cycle.)

She asked if I've had any recent odd bleeding or mid-cycle bleeding. I do get a pinky-red discharge at point of ovulation (which I think still happens) but have had that for years - she wasn't bothered by that. I also get a sort of 'false start' period about 4 days before it starts properly - sort of starts then stops. She wasn't worried about that either, and I haven't had any bleeding that starts up mid-cycle. (of course this is now getting me worried and doubting my memory of what happens...)

Anyway, she said the referral is non-urgent, I'm not to worry, but in the interim I should either reduce my oestrogen or stop HRT altogether. I'm happy to drop a sachet of the Sandrena which would take me to 1mg daily. But now I'm dithering about whether I should just stop.

This is pretty common, right? I'm trying not to freak out but I do have health anxiety.

It's a shame women feel forced to go through with it to speed things up. Hopefully it won't take too long and you'll have a better idea once you speak to the consultant. I am sure you can change your mind at that point, if you want to that is. Good luck whatever you choose.

I keep reading about that.

Hopefully not too long to wait for it.

Updates, in case anyone is interested

Spoke to a medic on the gynaecological cancer clinic team, he listened to me and is booking me in for this under GA as requested. I asked him about the risks of waiting another c.2-4 weeks (his estimate) he said that since:
-thickening is only slight
-pre-meno
-on HRT

that it will probably be ok to wait another 4 weeks as it's not looking high risk.

Phew! Now just sit tight and wait for the secretary to ring me and book in.

Well done - I hope it turns out well (odds on that it will 👍)

Hiya, how did you get on? I have my procedure under GA next week, that's been a 4 month wait for an urgent referral which is not ideal. So relieved to get a date.

What part of Scotland are you in? I was told it’s over a six month wait in Grampian just to get the initial gynaecologist appointment for a semi-urgent suspected cancer referral so I am going private - but that’s still ended up as a 9 week wait for a hysteroscopy under GA as private is so busy here with the NHS being so overwhelmed - I’ve four more weeks to go. (I could not get it done in outpatient as my uterus was tilted and she didn’t manage a biopsy).

My lining was 10mm mid cycle and the gynaecologist said that was not abnormal but I need the hysteroscopy & biopsy (and will put in a mirena coil). I’ve had spotting in the week before my period over the past couple of years but the GP didn’t care about it pre-HRT and it’s just now that I’m on HRT I’ve been referred. The gynaecologist did say I shouldn’t worry about the 9 week wait and there’s a high chance it’s either benign polyps or just hormones. Of course I’m still very anxious about the wait as it’s not no risk…

Hi @abdnhiker I'm in Glasgow and Clyde and it is now 7 so months since my original doctor appointment so I'm hoping my urgent referrals are not as urgent as others. I'll just be glad to get it over with, i also has a failed attempt at outpatients. Good luck, it's hard having it hanging over you. I'll come back and tell you how it goes, if that would help. From talking to friends and colleagues, i do think it's very common to be sent for biopsy and can't wait until the less invasive options are available.

Oh that’d be great if you don’t mind telling me how it goes! I don’t even know how long I should plan to be off work afterwards (would I be fine the next day or do I need a week off etc).

When I called the hospital here to check on waiting lists before going private I was told they read through them and downgrade some of the urgent referrals to “semi-urgent” and that was where I ranked so guessing you might have had the same type of assessment in Glasgow. It’s hard to stay calm though and feel like this is okay when wait lists are much less elsewhere!

I will do, mine is on Friday so am glad to have the weekend to recover. I think you'd maybe need the day after off, depending on your job. I've to be at hospital at 8am, likely to be home again for 3pm. Scottish gynae waiting lists are shameful. Good luck!

Hope all goes well for your procedure @Sunset88. I’m in SE England but family have said how bad the waits are for so many things in Scotland now.

I was put on the urgent 2ww by my gp last week after US scan showed 15.7mm endometrial thickening with cysts. Been on HRT for 3 years but in last few months bleeding has been erratic and heavy. Also have the joy of adenomyosis and intra-mural fibroids…

hope all goes well tomorrow @Sunset88

it does help to know how many of us are going through this - @Pharos hope it’s not anything sinister for you either.

Thanks so much. Just be glad to get it over with. Will report back when I'm not high as a kite!

Wanted to update now as I've only been awake for 30 minutes but feel absolutely fine. Everyone was lovely, and it all went smoothly. Feel absolutely fine, tiny bit of cramping but been given pain relief. Bleeding is from frobroids so looks like a hysterectomy for me. Nothing worrying and results will be by letter in 3 (!) months. Good luck with yours, it's just such a relief to have it over with and you will feel the same.

So glad it’s gone well and you’re feeling okay - hope it doesn’t actually take three months for your letter and starting the next steps but at least they’ve been able to tell you it’s not anything worrying.

See Campaign Against Painful Hysteroscopy on Facebook. I’ve had one hysteroscopy fully awake with cocodamol and Tramadol. I will not be having another without a general anaesthetic.

I think it will be that long, but I took a sneaky photo of her report and photos when getting changed, and she really does have no concerns. Lining was normal this time so there might not even be enough to check. Hysterectomy waiting list is 1 to 2 years, and at least i can get on that list straight away if I phone the secretary.

I've not had to take any pain medication since getting home and feel fine. Everyone is different though, I think you should probably take the next day off if you can. Good luck, Please let me know if you want to know anything at all about it.

Well done getting the sneaky photo (so jealous of the NHS app in England that gives access to all this personal medical info).

Thanks for the advice re recovery too - that’s very reassuring to hear that you’re feeling fine.

This happened to me a couple of years ago and it turned out to be a benign polyp which they removed however I continued to have intermittent bleeding ever since sometimes with months in between. Went back to gp, had scan and slight thickness (6.5) observed but as on continuous HRT am being referred on 2 week path and am awaiting the procedure where they will have a closer look and possibly biopsy.

It's so stressful, isn't it? I and doc thinks it likely Adenomyosis (detected on scan) or HRT or both. I had never heard of Adenomyosis before and it wasn't diagnosed a couple of years ago when I went through procedure.

I don't remember the procedure being that painful before. Was I just lucky or is my memory failing.

@Sunset88 Apologies if your consultant said otherwise, but unsure from your post if your consultant said you'd need a hysterectomy. This op for fibroids is rarely done now.

Post menopause, fibroids shrink, so unless your life is being made a complete misery with terrible bleeding and anaemia, they are often left alone if you're close to menopause, or they can do an op to remove the fibroids only.

All the best whatever happens.

I have a thickened lining with irregular bleeding (periods are 2.5 weeks long and one week gap between them). I am still waiting over a year later for my hysteroscopy, saw the gynaecologist who did a transvaginal scan after two ultrasounds and she was suitably concerned after she scanned me (she had been very dismissive before the scan saying why does it matter if my periods are 2.5 weeks long). I was also on a two week wait. I wouldn't expect anything to move quickly, it is very frustrating. Meant to say not on HRT.

What a shame you've been waiting so long, gynae appointments are a national disgrace right now. Are you still having 2.5 week periods? Can only suggest tranexamic acid, and ferritin testing. Hope you get your appointment soon.

Thanks! I am being treated as post menopausal and fibroids are the same size as they were 10 years ago. They are too big to be treated surgically. I suspect that I'm not actually through menopause yet so plan to go on the waiting list and see what happens with bleeding. The consultant thinks the bleeding is from fibroids, but it feels exactly the same as a period to me. There is an impact on my bladder and bowels and severe pain at times though, so I will investigate private options too as I've let this rule my life for far too long, just keeping thinking it'll resolve.

@TippledPink that’s a horrible wait, have you followed up and asked about cancellations at all?

How on Earth are these wait times acceptable and not national scandals that take down governments? Are we all just too nice about it? Distracted by government focus on other things?

I did have pre op tests done in February but they are now out of date, booked in for pre op tests again 4th July then hopefully will get a date this time!

Just as an update, bleeding started on Sunday and hasn't stopped yet which is a pain. Recent bleeding episodes have lasted a long time and followed a similar pattern of pooling and flooding, but I'm hoping it stops soon. No signs of infection and I've read in some hospital pamphlets that bleeding can last 6 weeks. Just as a heads up for others, hopefully you'll be luckier though.