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Menopause Matters magazine ISSUE 76 out now. (Summer issue, June 2024)

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Author Topic: Terrified now and in tears  (Read 2716 times)

CLKD

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Re: Terrified now and in tears
« Reply #15 on: August 07, 2023, 02:16:38 PM »

.. and breath.

Take a list of concerns with you.
The examaniation doesn't 'cut' the skin, it's a scraping action [look away now if you are eating]; to take cells from a wide area.  This may include a little bleeding if the area is dry.  Often an incomplete sample may arrive at the Lab., similar to a mammogram that needs repeating.  We are lucky that we have access to these investigations even though the waiting lists have become longer over the years, with Covid not helping.

I was lucky that I didn't suffer with sweats.  Often progesterone part of a regime is badly tolerated. 
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Kathleen

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Re: Terrified now and in tears
« Reply #16 on: August 07, 2023, 02:40:25 PM »

Hello again meno-mel

Your comment about all your HRT regimes causing bleeding struck a chord with me.

I have had post meno bleeding a few times and one investigation showed a slightly thicker lining but a hysterectomy revealed nothing untoward so the conclusion was that a recent increase in patch had caused the problem. I reduced the patch and the bleeding stopped.

More recently I had a similar experience and yet again my womb lining was fine, no polyps or fibroids and a thin lining of 2mm. Again my HRT was the culprit so I lowered the Oestrogen and the bleeding stopped.

My point is there was nothing in my womb or my ovaries to cause the bleeding, the lining was thin and healthy so where the bleeding was coming from I have no idea and actually I didn't think to ask. All I know is that the HRT I was using was making this happen and when I changed that everything settled.

 It is possible that you are in the same position and that there is nothing sinister going on at all  it's just that your body is reacting this way to your HRT

I hope this brings you some comfort and that you can find some peace until your scan on Friday. I will be thinking of you.

Wishing you well and take care.

K.
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meno-mel

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Re: Terrified now and in tears
« Reply #17 on: August 10, 2023, 08:28:46 AM »

Thank you both, I've calmed down a good bit now.

Getting older isn't for the faint hearted and while the NHS can't do what it was managing to achieve ten years ago by any stretch of the imagination, we still have what is left of it and so long as you don't mind other people around you dying on trolleys or while waiting hours for the ambulance then hey, no probs, you can wait a few days for admission!

At least these days the NHS are telling patients the whole story, they have no choice but to give all the details when the patient has no choice but to take it outside the NHS for treatment. So I will have that at least. In our region alone the guy on the BBC news said it's in excess of a hundred unnecessary deaths each week due only to the funding/staffing crisis and nothing else whatsoever. These are people who would live in the south, or in Scotland, if they'd thought to move. That was a scary estimate considering it was July at the time. I don't know whether it's considered vulgar for a female to talk about the relevant money matters or politics here, but I imagine mentioning what was on the BBC news is ok, I get my info from there and ITV, I don't do social media and I'd like to think it's obvious I'm not the tabloid type, so it would be shocking that there is something wrong with quoting the BBC on a UK website, but there is so much prejudice out there, we just didn't know about it until seven years ago because it used to be considered vulgar to be racist. Sad times all round.

I wish I'd done something before now about the bleeding, I've gone private often enough before, I wish I'd thought it might be serious at the time, but I didn't, but being mocked for waiting instead of paying privately, not by any nice ladies here, just two sniders, shocked me into the realisation they were right, I shouldn't have waited ten months for my (more than six months of) post menopausal bleeding to be first investigated, I should have paid to get a private scan because it's kind of scary that in some places the NHS will scan you as an emergency.

I hadn't known that, learnt it here, it's called 2WW and it is a frightening prospect that those women didn't have different symptoms from me, they just live in areas more favoured by the purse string holders.

That was the scariest thing I've read on this website and we aren't supposed to scare each other, but it can also be viewed another way, as women empowering themselves by seeking out and finding correct information. So even though the fact some women are treated as an emergency for my symptoms is indeed terrifying, I wouldn't want to have that information withheld from me for the purpose of not scaring me!

So now that it's 15 months since my post meno bleeding began, I can have my scan for free tomorrow and there was no cancellation of course. Who would wait a year then cancel? They'd never get off the basic waiting list onto the pending, never mind have an appointment to cancel because they'd go private months beforehand.

I told the nurse over three weeks ago the scan is booked on day 28 of my cycle and she was looking for some way to change the appointment to a more suitable time of the month, but the appointments department have been moved to a central location where they will never know when is the right time in the cycle for any individual, it's assumed that patients are ready to be scanned 24/7.

I don't feel in a position to make a fuss because it's not even my own NHS trust scanning me, the menopause clinic is in the neighbouring trust in a place I'm not familiar with. It's called a gynae clinic on the letter but they said it is the main HRT clinic.

It's noteable that only women are affected by the stupidity of the appointments system change. Men don't have cycles, so for men the best appointments are simply asap, easier to ignore that women are different.

These are my main worries, if I stick to the cause of the hold up, then I needn't think so much about the outcome of the hold up  :-\

I'm sitting with sweat dripping off every part of me, a fan blowing on and off as I try to keep up with the way I'll freeze then overheat as it passes. I lay soaked in sweat last night again, since utrogestan started 14 days ago I've not had a single dry night because utrogestan seems to cancel any effect I feel off Estradot50. I'm still on the starting dose, it's still not working well and I'm not allowed to increase my oestrogen to a level that feels right for me until I've had my scan!!!!!

So why don't I stop HRT? My patch fell off before I put my new one on on Tuesday and I had felt really ill on Monday when I assume it wasn't there. That was what I was afraid of.

The Estradot50 isn't anything like enough to control my symptoms. It works way better for me than Evorel50, so I think it's the dose rather than not getting on with the brand. Utrogestan wipes out all the good effects of both Estradot and vagifem, I start wetting myself as soon as I get to use utrogestan vaginally, I've been told 200mg vaginally for 12 days a month, if I take it orally I simply become someone else who might kill herself with very little pushing.
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meno-mel

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Re: Terrified now and in tears
« Reply #18 on: August 10, 2023, 08:34:56 AM »

And the postman just passed, leaving my cancelled appointment letter with me.

"Due to unforseen circumstances we have had to revise your appointment."

They plan to see me in five weeks instead, 15th September and given my cycle is usually a bit longer than four weeks we'll be in the same situation regarding being just before my period.

Fffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffflaming funding crisis.
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CLKD

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Re: Terrified now and in tears
« Reply #19 on: August 10, 2023, 08:38:43 AM »

Firstly - what is 2WW?

2ndly - ring your surgery and tell them about the postponement - ask if there is another Hospital that will offer the scan

3rdly - if you are able to take a cancellation appt at very short notice, ring the Dept and tell them

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Penguin

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Re: Terrified now and in tears
« Reply #20 on: August 10, 2023, 09:07:46 AM »

2WW is the pathway that the NHS GP refers you via if you have symptoms that could be cancer. This is supposed to guarantee you have an initial appointment, I.e. scan etc, within two weeks. There are then other targets which kick in after the first appointment.
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Penguin

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Re: Terrified now and in tears
« Reply #21 on: August 10, 2023, 09:13:36 AM »

Meno-mel, in one of your earlier posts you said that if the scan hadn't been on Friday, you'd have booked a private scan by now. Please, put yourself out of this misery and do that. It sounds like your stress and anxiety levels are through the roof now. If you can't, as CLKD suggests, get your GP to help, or get a cancellation at a time that coincides when your lining is likely to be thinner, then this really might be a good option for your mental health given how worried you are about this.
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meno-mel

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Re: Terrified now and in tears
« Reply #22 on: August 10, 2023, 10:37:24 AM »

Yes, Penguin, I've been searching and there are two local doctors that do private consultations, the one whose named speciality is postmenopausal bleeding is £200 plus £336 for an ultrasound.

I've got the savings to do it and the fact is I only have until January to pull myself together and get back to work.
I had tried to quit as it was so embarrassing being off every fourth week for HRT side effects.
Bless them they want me back and extended my contract that I was letting lapse last month, for another six months unpaid leave, so I've got until January to get better now and I would quite like to go back then I think.

I hate to spend that kind of money when I've nothing but PIP as my income, but I will.

Besides my husband always wants to pay for everything anyway and I've no doubt when he wakes up and I tell him it's cancelled he'll want to pay for this too.

I've not discussed it a lot with my husband, his mum got breast cancer at exactly my age and died, I know it would internally rip him up if he was aware of a cancer risk being involved in this.

He had a coronary bypass, done privately of course or he might not still be here. Who would wait on the NHS list when they told him they'd never seen such blocked arteries still working away? He was on the 100th centile for the level of blockage, only that he's an ex-athlete saved him they said, his other risks were lower I guess. The consultant told him he couldn't afford to wait.
All done to sidestep the heart disease that killed his dad young, after it was all done the consultant was happy with the outcome, he gave the definite impression people on the waiting lists are dying when they weren't even as bad as my husband was and that was back in 2019 when doctors weren't often saying people were dying from the cuts.

It's all you hear now from NHS doctors unfortunately.

It cost £14,000 for the op, done in 2019 in an NHS hospital with all the NHS aftercare, but none of the waiting months then years for a heart attack until the NHS can save up to do it "free of charge" out of all the thousands we were paying in taxes every year at the time.

I think we can find it again if we need to. I was surprised the clinic doesn't take insurance, but that's good for me because we don't have any, best quote was £2k a year for both of us, too much now my husband has taken early retirement, so by now that theoretical pot of money that would have paid for insurance that wouldn't even have covered menopause has £6k in it.

I wonder if they take theoretical currency?  ;)
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alibeau

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Re: Terrified now and in tears
« Reply #23 on: August 10, 2023, 10:38:37 AM »

Meno Mel, I know it really doesn’t help but wanted to send love and strength to you.

You will get through this.

Book a private appointment if you can for the sake of your mental health.

Different circumstances but we booked a private MRI for my daughter a few years ago, worth every penny as my mind kept taking me to the worst case scenarios.

Sending best wishes xxxx
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Clovie

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Re: Terrified now and in tears
« Reply #24 on: August 10, 2023, 11:01:32 AM »

Meno mel -  My story is that (in brief) I am still having periods at age 59. Complete with all the associated PMT syndrome beforehand.
My doctors did not believe I could possibly be having periods at 59, despite them being regular predictable blah blah blah.  (I've posted loads about it on this forum...)
Anyway
I was sent for a scan as I 'must have womb cancer.' YES she said that. Out loud. :(

I had one about 6 weeks later. First of all if they actually DO suspect cancer you are sent on a fast track and need to be been within 2 weeks. At the appointment i asked the sonographer if I'd been fast tracked and she said no.  I'm not sure where you are in the UK but surely wherever you are, if you are at real risk of cancer you'd be seen before now? :(   I know there's waiting lists but?  I'm in Scotland. When they thought my anaemia was due to internal bleeding I was fast tracked for colonoscopy and endoscopy and my appointment came just 2 days later. No joke!

Anyway, back to my scan for 'bleeding'.  They will never refer to it as possible menstrual periods, late onset menopause etc etc. Just irregular bleeding :(
Everything was fine.
no signs of anything at all untoward.
perfect lining thinness
And she told me she could tell by looking at the size shape and condition of a womb if it was post menopausal or not. She told me mine was that of a still menstruating woman.

All fine! 

Please do try not to worry - stupid empty words, I know. But worrying myself sick beforehand, like you are, did me no good at all :( :(  Worry when there is something to worry about. My periods have never stopped - but they have been through varying years of being pretty scanty to very scanty at times, to heavy and all manner in between.  Maybe your stopped 'time' was just very scanty indeed. The human body follows no rule book :)

I do think from what you've posted that you are not being fast tracked?  If when you have the scan your cycle is not in an ideal place, I'm sure they can allow for that anyway.

If you can possibly, because you're so stressed, get a private appoint. I really do know how you feel Mel, I too have anxiety. Major health anxiety, and I spiral into bad scenario thoughts at the drop of a hat. It's wearing. Wears you down completely. So I'm sending you huge hugs, lots of good luck and more importantly right now - calming vibes xxxx


« Last Edit: August 10, 2023, 11:34:42 AM by Clovie »
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Mary G

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Re: Terrified now and in tears
« Reply #25 on: August 10, 2023, 11:38:34 AM »

meno-mel, why don't you try and book a private transvaginal scan?  That is what I would do because there is no guarantee they won't cancel your next scan.

I don't use the NHS but agree that it is starved of cash, resources and staff.  Basically, it doesn't have the bandwidth to deal with complex menopause issues and an honest conversation needs to be had about that.  Their HRT prescribing guidelines are very rigid and they deliberately overdose women with progesterone because they don't routinely offer uterine scans.

I found 50mcg patches very ineffectual and my symptoms only began to disappear when I started using Oestrogel so I would definitely try gel.

Bleeding on HRT is very common be it a continuous combined regime or cyclical.  Progesterone acts as a moderator and forces the womb lining to shed (often sporadically) when it starts to build up so it is doing its job but book a scan for peace of mind.

I think it's appalling that you have been subjected to all this unnecessary worry.
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meno-mel

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Re: Terrified now and in tears
« Reply #26 on: August 10, 2023, 11:51:23 AM »

Thank you Clovie for sharing your story.

If there were more of us then the doctors might have a clue, but they are still in the infancy of learning what menopause is.
Yesterday I read about a study that demonstrated it's not just declining hormones that are causing all the havoc during menopause, there are other systems involved to cause this or that in the study but they didn't pinpoint what, the brain was heavily involved but I'll not pretend I understood it properly.

It's all such a huge unknown and maybe like Rhesus disease which was so devastating right up until our grandparent's generation just because they hadn't found the cause, now it's treated preventatively whether you want to be treated or not!

My hope is that someday they can test, like for Rhesus factor, to see what type of menopause the woman is likely to be having and give the right treatment without so much trial and error.

I have some family moved to Scotland just before the indi-ref happened and I've heard how well sorted things are there by comparison!
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flutterby

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Re: Terrified now and in tears
« Reply #27 on: August 10, 2023, 12:06:38 PM »

Hi meno- mel so sorry you’re having a rough time
In my early 60s I was on sequential HRT and bleeding every morning. GP suggested continuous, but I had breakthrough bleeding on and off. Ultrasound showed thickening of womb and hysterescope confirmed but nothing else. Continued bleeding for more months. Next scope they found a fairly large polyps which the consultant said they should have seen last time. Once it was removed the bleeding stopped.
I hope my story might help you, not worry as much
Flutterby x
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meno-mel

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Re: Terrified now and in tears
« Reply #28 on: August 10, 2023, 12:23:48 PM »

Thank you alibeau for your kind wishes and flutterby for your experience too.
Thanks MaryG as well, I'll ask again whether I might be allowed the gel, my GP said no when I asked for it before, so I'll ask at the private appointment, I am counting on it being more useful!

I suppose if they thought it was cancer they would refer me quicker, but why would they think that when I have been unable to even speak to a GP most of the time? It took the HRT clinic two weeks to return my calls when I had a query about taking utrogestan vaginally, I've had no face to face appointment for menopause, noone has so much as looked at me across the room, never mind get close enough to know whether I might have cancer or not.

I now have an appointment for the 4th September, couldn't get earlier but I can phone daily for a cancellation if I like, the receptionist was lovely, they don't do a cancellation list, but I can phone as often as I like to check for any individual cancellations.
So that will be £567.50 in total if she does the ultrasound, six weeks PIP will pay for it, I suppose that is what it's for after all. They take your card details up front, then charge you on the day and I'll have another payment in my bank by then anyway.

So after all this time I'm going to end up paying anyway, but I don't see I have much choice any more. Enough is enough, the nice guidelines are not being followed, I'm glad my head is out of the sand now. Those people who upset me did me a favour I guess because they made me angry enough to actually do something about it.

Just on the lighter side I had a laugh when I asked whether my GP's practice has a menopause specialist. The receptionist didn't realise, but she named MY GP (the one who says northisterone can't possibly cause side effects and also said she isn't allowed to prescribe the oestrogen gel as a GP, that needs a specialist). ;D ;D ;D
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Donna-paul

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Re: Terrified now and in tears
« Reply #29 on: August 10, 2023, 12:46:34 PM »

Please don’t let me worry you but every bleeding post menopausal should be checked by 2 week pathway where you get a scan and a biopsy. I only know as I’ve had a full hysterectomy 19 weeks ago because of cancerous cells in my womb. I’d had a clear biopsy and slight thickening of womb 15months before. This time I had bleeding again lost a lot of weight sent for 2 week pathaway lining ok but thank god the nurse said will I do another biopsy. Within 2 weeks I was seeing the cancer surgeon and 2 weeks later everything removed and it hadn’t spread. Most Drs and hospitals take post menopausal bleeding seriously. Good luck
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