Post menopausal bleed.

[twiddlingthumbs69]

Has anybody experienced this? I’m 20 years post and started very light bleeding yesterday.

Ive got a GP appointment in the morning but I’m worried they are going to try and do an internal.

Its so painful I simply can’t tolerate it, even with the heavy breathing, thinking of England etc 😂.

so, just wondering if anyone else has had this, what was it, what happened (I’m assuming they’ll refer).

im not on HRT etc so cant point it to that

anyway, any advice would be much appreciated

Hi @twiddlingthumbs69 Not sure if this will work for you, but I dealt with the waiting for updates in the same way that I used to deal with waiting for exam results (albeit many years ago). When I was waiting, anything good was possible, I would have aced it, got the highest score ever, but because I could not change anything at that point, there was no point in worrying... so I just got on with enjoying the freedom it gave me to do nice things for me.

Just some other bits, get yourself some nighties for hospital (easy access for the repeated looking at your tummy, and loose dresses, think SeaSalt styles for the day time, definitely lipbalm and wash your hair before you go in. Try to get a feel for how many days you will be in and pack just for that. Take an Amazon Fire and tether it to your phone for internet access, so you can watch crap and take ears with you... wards are noisy places and you are woken up seemingly every time you drift off...

@LatteLadythats a brilliant idea, thank you. I definitely need a decent couple of nighties so I’ll get onto that. I hadn’t thought about tethering my phone and kindle, makes perfect sense. I’ll load up some good books as well. I might actually get to watch some stuff that DH won’t entertain as well. 😄

@twiddlingthumbs69 how are you? Any news?

@Eggybreadwithnuts hiya. Yes, I had the phone call after the mdt yesterday. Not what I was hoping. They can’t tell what it is, it’s 50/50 benign or malignant. It’s the worse possible thing she could have said to me really. Sent me spiralling. I have a meeting with the consultant tomorrow morning to discuss. I am in a very fortunate position that I could go private with him, but that all depends on timescale. NHS is saying 4-6 weeks for surgery. It wouldn’t surprise me if he’s no quicker. They have downgraded my Orad score from 4-5 to 3-4 which is something I suppose. I have to admit I’m not dealing with this at all well. My anxiety is through the roof and I’m finding it difficult to function really. Thank you for asking x

Sorry to hear that @twiddlingthumbs69. Sending you lots of love and strength.

They couldn’t tell what my mass was until it was tested, after it was removed. I had to wait four weeks after my surgery to get the results.

It’s absolutely not knowing and waiting that gets to you. Your brain goes into overdrive and I thought I was definitely going to die. I saw my GP, who was lovely to me. She gave me some sleeping tablets to take when I was desperate for a good sleep.

You will get through this @twiddlingthumbs69 , I promise you. ❤️

@Booomerrranger thank you. At the moment I feel as if I’m in a constant state of panic. Just want it over and done with, as everyone does. It’s the reliance on the NHS that bothers me really, I feel I have no control as to when CT/surgery will happen. I know they say within 4-6 weeks but without a firm date that’s just random. I want to know exactly when. I don’t want to wait a month and then know, with complete radio silence before then.
I know I like to be in control in any situation anyway and hate waiting for other ppl so this is my worse nightmare. I have got some propranolol which helps a bit. I had a nervous breakdown last year after a family traumatic bereavement and it’s exactly the same feeling now. I’m fully aware that there are 1000’s of ppl, just like me at the moment, going through the same thing on the NHS but that doesn’t help. Sorry, I seem to have gone into a bit of a rant now!

Completely understandable and valid feeling the way you are. If you have contact details it may be worth feeding back your anxiety and trying to get some further info on CT/operation timing. When I was waiting for a scan they did contact me offering an earlier appointment because they had a cancellation, so it could be an idea to make them aware that you would be available for short notice cancellations (if you are).

Hi @twiddlingthumbs69 Well the first thing to say is that you are no better or worse off than you were before the call, nothing has substantially moved apart from your anxiety exacerbated by the lack of firm information. Whilst you may not appreciate this, the wait for the operation is pretty good when you realise what else will need to happen. My timeline was:
27 July - Referral to 2 week pathway
14 Aug - 1st Gynae app't
4 Sept - Biopsy under GA
16/17 Sept - Diaganosis, MRI & CT Scan
7 Oct - Treatment plan discussion for hysterectomy
16 Oct - Bloods & ECG
20 Oct - Hysterectomy

You will be seen by the hospital a couple more times before the op, to discuss the initial treatment plan and then the pre-op assessment. You will be fed titbits at each app't, ie, they will not really discuss post-op options until they have the histology but if it would assuage your anxiety, tell them, "It would be helpful to me to understand what I might be facing post-op, if it is non-malignant does that mean this is it done and dusted? Or if it is malignant, what might we be looking at? Knowing this would help me to plan and get organised both at home and in my head."

Every patient is different, you also have to guide the team as to what you want to hear and what you can hear without it tipping you into the abyss. Keep a notebook with you and scribble down questions, then the night before your appointment order them into a list with the most important question at the top and the least at the bottom, that way you will get the most important to you question, in first.

It may not feel like this now, but the weeks will speed up and you will have a number of other app'ts too. We will be rooting for you.

On a personal note, I had hoped my MDT might have been this morning, but as there has been no call, think I might hear next week exactly what chemo and brachytherapy I will need and over what period.

@LatteLady crikey, your timeline seems long, makes mine look positively stratospheric.
Ill see what the consultant says tomorrow morning, hopefully I’ll glean more information.

Im sorry to hear you didn’t hear after the MDT meeting today. It’s such a waiting game.

Ive never had anything like this happen to me before. I’ve never had surgery or been through the system so your advice is invaluable to me, I’m completely in the dark, so thank you.

Really hope that I’ll be able to post some positive information tomorrow after this meeting.

BTW: I know different Trusts behave differently, I’m in East Sussex (Brighton). Where are you? X

The other thing I forgot to mention was my GP advised me to stay with the NHS. She said the NHS is far better than the private sector for this sort of thing. She said you are better looked after in an NHS hospital for surgery, as absolutely everything is available. For example if you need extra care during surgery it’s there, or if you needed ICU or high dependency it’s all on site. The other thing she said was every healthcare professional you might need to see is right there in the NHS.

@Booomerrranger thank you, that’s a very good point.

Explain all of this tomorrow how yr feeling etc. Agree nhs is prob same timescale as private. But yr on the system and its moving. Keep posting here of it helps you 🌸

Update:
Seen consultant. Bit worse than I thought. Uterus lining 20mm and irregular. Mass is 5mm.
Blood markers are very high.
Will need biopsy of uterus and CT scan to check lymph nodes.
He will ring me on Wednesday when he has final report back for MRI.
Op will be before Xmas, either ovaries out or hysterectomy. May need chemo if it's spread.
Still 50/50 at this stage.
I have to wait until the further tests are back so he knows which op he's doing.

So sorry to hear this but at least you’ve got some answers and possibly a timeframe for op. Stay strong xx

Im glad you have answers now, give yourself time to process. There is a plan in place. Keep posting if it helps you. I think there are a few on here that can give good advice having gone through this. Deep breathes op sending a big hug ❤️

Hang in there @twiddlingthumbs69 . Sending love and strength ❤️💪.

Sending you hugs for tomorrow. Take a deep breathe, there will be a plan @twiddlingthumbs69 ❤️

@twiddlingthumbs69 Just wanted to say that I am sending positive vibes over to you... am also hoping for a call today as the MDT mtgs are held on Weds am, so may get to know when my chemo and brachytherapy may start.

Can I also offer some reassurance, I was expecting a long and protracted recovery time from my hysterectomy but the robotic surgery really cut down on this. Whilst not exactly weight lifting, I have been out for long walks with friends, am catching up with my ironing and apart from needing a nap sometimes in the afternoon, I am coping really well.

One thing I wish I had been aware of, was the number of people who will come and visit you and why... I think it would have been really helpful to have known who was scheduled to visit, so that I could have had questions and a note book handy.

@LatteLady that’s great news, it sounds as if your recovery is going really well.

my only update is I now know I’m having open surgery for a full hysterectomy with staging.

i have the dreaded hysteroscopy tomorrow morning and that’s the last piece of the puzzle so hopefully I’ll hear a date after path lab results are back.

apparently my surgery date has been pencilled in but nobody seems to want to tell me when.

good luck with the MDT meeting hopefully you’ll get a date to start your treatment. 🙏

@Eggybreadwithnuts thank you 🥰

It’s great that things are moving for you @twiddlingthumbs69 . I had open surgery for the 6cm x 10cm tumour, plus full hysterectomy and removal of omentum. I made a full recovery. I have everything crossed for you.

Good luck for tomorrow. 💪❤️‍🩹

@Booomerrranger thank you. Strangely, the hysteroscopy that was booked this morning has now been cancelled by the surgeon. I have no idea why

Pleased you know whats happening. Sounds like your surgery will be very soon, even the next week or so maybe.
Can you get in touch with the consultants secretary for an update? Sending you hugs and positive vibes...and to others on here, that are or have gone through similar.
I do keep thinking of you...if it helps @twiddlingthumbs69 post on here...sounds like there's some good advice.

I had a phone call with the surgeon this afternoon. Apparently the ct picked up a 12mm “disease” on my liver as well.

They will take it out with everything else. She didn’t expand on what it was, presume they don’t know.

Id just about got my head around the other stuff and now this. I don’t know what to think now, it’s the final straw really.

I feel like I’ve gone back to the beginning, mentally.

Im dosing up on Propranolol now just to function. Haven’t left the house in days. Can’t be bothered to get dressed. Can just about summon up the energy to feed the cats but apart from that I’m broken now