Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Rosie Roo on October 20, 2023, 02:17:53 AM
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Am I correct in thinking that if you are on HRT and you have been for a few years ….that the only way to know if you are peri or post menopausal is to come off it and see what happens ???
Thank you x
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Which hrt are you on and how old are you ? x
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Yes, I've been told repeatedly that the only way to know is to stop taking all hormones and see what happens.
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I’m not on hrt anymore . Had a total hysterectomy due to womb cancer . Bleeding more or less all last year . Presented a lot at GPs . Am now questioning why it took 8 months for referral to be actioned . Hospital are saying that I wasn’t put on two week pathway due to me being perimenopausal !!! I’m 59 and was on hrt for years ! So I don’t know how the hell they came to that conclusion ! Had I been classed as menopausal I would have been seen within 2 weeks !
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I mean classed as POST menopausal
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At 59 most are menopausal though not all. Given your age and change in bleeding imo even if they couldn't use the 2 week pathway it shouldn't have taken anywhere near 8 months.
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I’m not on hrt anymore . Had a total hysterectomy due to womb cancer . Bleeding more or less all last year . Presented a lot at GPs . Am now questioning why it took 8 months for referral to be actioned . Hospital are saying that I wasn’t put on two week pathway due to me being perimenopausal !!! I’m 59 and was on hrt for years ! So I don’t know how the hell they came to that conclusion ! Had I been classed as menopausal I would have been seen within 2 weeks !
That's awful. I hadn't realised you wouldn't get 2 week pathway if not post menopausal. As you rightly point out, how would you know unless you stopped hrt. Are you thinking of complaining?
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If you were diagnosed as post menopausal then that means you definitely should have been put on the two week pathway. Someone badly messed up with your care. I'm so sorry Rosie
Taz x
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I think you should have been referred on the two week pathway definitely. x
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I was put on the two week pathway twice in 15mths and I’m 56 . I too have had womb cancer and was on low dose hrt. The first time I had light bleeding my womb lining was just over the limit so had a biopsy and it came back normal. This time I was bleeding again at Xmas lost a lot of weight and my cuti drs felt something else was going on. I hadn’t mentioned I was bleeding again until I saw my Gp who sent me to rapid diagnostic team who sent me straight on the 2 week pathway. I was operated on 6 weeks after having the biopsy. All very quick hope you are ok.
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I’m not on hrt anymore . Had a total hysterectomy due to womb cancer . Bleeding more or less all last year . Presented a lot at GPs . Am now questioning why it took 8 months for referral to be actioned . Hospital are saying that I wasn’t put on two week pathway due to me being perimenopausal !!! I’m 59 and was on hrt for years ! So I don’t know how the hell they came to that conclusion ! Had I been classed as menopausal I would have been seen within 2 weeks !
Agree with Sheila. Eight months is an inordinate length of time to have to wait for any kind of treatment.
The bleeding should have been a give away, coupled with your age.
I would look at complaining to PALS about this.
How are you managing without HRT now? x
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I’m not on hrt anymore . Had a total hysterectomy due to womb cancer . Bleeding more or less all last year . Presented a lot at GPs . Am now questioning why it took 8 months for referral to be actioned . Hospital are saying that I wasn’t put on two week pathway due to me being perimenopausal !!! I’m 59 and was on hrt for years ! So I don’t know how the hell they came to that conclusion ! Had I been classed as menopausal I would have been seen within 2 weeks !
If I understand correctly you do not have a womb and as you have had a total hysterectomy this means you no longer have a cervix either?
I think the two week pathway is designed to identify potential womb cancer - but in your case you don't have a womb. However ANY such bleeding from the vagina is not normal and should be seen urgently.
If you say you have been bleeding for a year since your operation, then surely this should have been investigated as part of the post-op follow-up? I'm not clear about protocols here but I would most certainly want to know why I was still bleeding if I no longer had a uterus or cervix, and especially since your operation was due to womb cancer.
Do ask for an urgent referral.
Hurdity x
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Hi Hurdity. I think Rosie is referring to the fact she was bleeding for over a year before finally being found to have womb cancer and given a hysterectomy. She is querying why her cancer wasn't picked up earlier
Taz x
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Exactly that Taz2 x
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My head is mashed at the moment ..with the realisation that I may have been severely let down . Will post later xx
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So sorry this happened Rosie.
Were you on sequential or continuous HRT? I’m guessing continuous.
There has been a fundamental error made here on behalf of the health service. Post meno bleeding ( once settled on continuous HRT after 6 months ) absolutely must be investigated under the 2 week cancer pathway. They must do a scan ( abdominal or internal) to measure womb lining and if deemed necessary, a hysteroscopy.
Take your time, but start thinking about how you want to proceed with this. Starting with your GP. Did they do a referral to gynae? Did gynae contact you ? What made them think you were peri ?
Hugs 🤗 x
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Rosie, I'm so sorry this has happened to you. It is medical negligence and I would have no hesitation in initiating proceedings against the NHS.
I would find a lawyer to represent me. If you google NHS medical negligence a whole load of different organisations come up.
Something similar happened to a friend of mine years ago. The NHS refused to give her a hysterectomy when she was diagnosed with cervical cancer. God knows why, it was completely insane. They later told her husband he could sue but he couldn't face it.
If women were screened properly with regular scans, much of this could be avoided.
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Hope you are okay Rosie? X
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No I’m not ok Nas … it was when i mentioned at my post operation appt ( 4 months after op!) about the long wait for the hysteroscopy that I learned that I had waited so long because the Gp had me down for a routine referral as opposed to a 2 week one .
So with the back log at the hospital I waited 8 months for a biopsy . I wasn’t unduly worried because I was given the impression that the Gp wasn’t . Size of fibroids were mentioned etc . Had a diagnosis of womb cancer and then total hysterectomy . No further HRT allowed . When I asked how the hospital had triaged me I was told that because I was peri that I didn’t qualify for the 2 week path way ! My point is who the hell decided that ! I’m now 59 and have been on hrt for years so how did they come to that conclusion !
Going to talk to Gp tomorrow’ and take it from there . Missing my HRT as got loads of symptoms.. just feeling totally let down. And all the comments on here have validated how I feel really . Thanks ladies xx
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I mean if I had been seen sooner .. it may have not turned to cancer but remained a thick lining with a small polyp …that could have been removed .
🥴
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Rosie
My husband persued a GP's medical negligence for a different reason.
Emailed all written information available to a lawyer on a 'No win No fee' basis. First lawyer wouldn't touch it but second lawyer went much further asking for more information and sought advice of a medic. The second lawyer eventually went no further but it gave a feeling that they had at least looked at it in some depth. With the possibiltity of needing deeper pockets my husband went no further. Some consolation though through the second lawyer.
Think I'm trying to say that you might feel better just trying on a No win No fee basis and you may find that they take your case up.
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No I’m not ok Nas … it was when i mentioned at my post operation appt ( 4 months after op!) about the long wait for the hysteroscopy that I learned that I had waited so long because the Gp had me down for a routine referral as opposed to a 2 week one .
So with the back log at the hospital I waited 8 months for a biopsy . I wasn’t unduly worried because I was given the impression that the Gp wasn’t . Size of fibroids were mentioned etc . Had a diagnosis of womb cancer and then total hysterectomy . No further HRT allowed . When I asked how the hospital had triaged me I was told that because I was peri that I didn’t qualify for the 2 week path way ! My point is who the hell decided that ! I’m now 59 and have been on hrt for years so how did they come to that conclusion !
Going to talk to Gp tomorrow’ and take it from there . Missing my HRT as got loads of symptoms.. just feeling totally let down. And all the comments on here have validated how I feel really . Thanks ladies xx
I think you can make a complaint re PALS, although I think that may apply to hospital negligence rather than GP. I would very much want to know why the GP classed you as peri and would want it shown that they had followed guidelines in doing so. I thought they classed women as post menopause at a younger age but I may be wrong. It could be worth raising this with your MP as it sounds like a wider change is needed unless it was something limited to an error made by your particular GP.
Be careful with no win no fee though, they take an awful lot of any payout, plus they made my friend take out insurance to cover any potential losses their side.
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It sounds like the fault may lie with your GP, as they are your first port of call. They have your records and should ask the relevant questions.
When I had my third episode of pm bleeding in august, I literally emailed the surgery, telling them so. They then passed that information directly to the gp, who actioned a 2week pathway referral that day.
Appointment came through within days and biopsy done a week later.
Your GP has let you down. I would write to the practice manager and ask to arrange a meeting between you, the practice manager and the GP who did the referral. The GP will know you are post menopausal by looking at the type of Hrt you are on.
Did you get in touch with either gynae or the GP, after you had received no appointment within 2 weeks ? Gynaecology would be able to tell you if a referral had been made and if so, what type.
I think i would have also reminded the Gp that NICE guidelines recommend a referral on the 2 week pathway and could they double check this has been actioned, as you’ve been waiting so long.
Hope you get some much deserved answers soon.
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It sound like the fault may lie with your GP, as they are your first port of call. They have your records and should ask the relevant questions.
When I had my third episode of pm bleeding in august, I literally emailed the surgery, telling them so. They then passed that information directly to the gp, who actioned a 2week pathway referral that day.
Appointment came through within days and biopsy done a week later.
Your GP has let you down. I would write to the practice manager and ask to arrange a meeting between you, the practice manager and the GP who did the referral. The GP will know you are post menopausal by looking at the type of Hrt you are on.
It’s the fault of the GP, not the hospital.
Did you get in touch with either gynae or the GP, after you had received no appointment within 2 weeks ? Gynaecology would be able to tell you if a referral had been made and if so, what type.
Yes you're right Nas, the hospital would only be going on what the GP sent them, and if GP requested a routine referral, then thatis what would have been actioned. I think it crucial to find out on what basis the GP did it as routine, ie how did they make the decision of peri vs post menopausal. What do official guidelines say about when a woman becomes post menopausal.
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Exactly penguin.
The GP is totally at fault here (I think)
The GP did not read Rosie’s notes regarding her HRT regimen. Assuming she spoke directly to a GP, then she would have been able to convey the fact that she is 59, been on x type of HRT for a number of years, but is now bleeding. That should send alarm bells to the GP to initiate a 2 week pathway referral.
Nice guidelines stipulate, that any unscheduled bleeding once post menopause ( 12 months from last natural period ) should be investigated. Rosie was on HRT for years ( and settled on this regime I'm assuming?).
Unless the GP did an urgent referral but it got overlooked by the hospital and marked as routine?
Either way, start with the GP.
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Thank you ladies . Going to speak to her tomorrow and get some clarity . The issue is I’ve got to go forward under the hospital for the next three years and I’ve lost my trust at the moment. And feel totally like I don’t matter. As if the diagnosis wasn’t bad enough, then the op , then recovery… then finding out how they triaged me ! My head is spinning . X
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https://www.nhs.uk/conditions/menopause/
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Rosie the above link puts the upper age for 'usual' menopause to be at 55. It doesn't differentiate between whether on hrt or not, therefore you could quote this.
Also look at the NICE guidelines for diagnosing menopause - google it, there is a dedicated page for how to diagnose it. It again mentions women being over 55 and bleeding in menopause warranting a 2WW referral for endometrial cancer. Again, it doesn't say anywhere (from what I read) that hrt delays menopause. So what specifically was the GP using to decide you were peri and therefore didn't warrant a 2WW referral. Ask them to show you! If they can't, then that is the basis for your complaint.
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Thank you Penguin !! Really appreciate that .x
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Hi Rosie,
How are you doing? Any joy with speaking to your GP at all?
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My referral basically went through the wrong channel .. it should have gone directly to the hysteroscopy clinic at the hospital where I would have been seen fairly quickly but it didn’t… when the doctor realised she redirected it to gynaecology at the hospital . They downgraded it (by mistake ??) to routine !! Hence the long wait for me and a nasty diagnosis .. ( just for the record I did chase it up numerous times but got told to wait for a appt that would come in post . )
Just crap crap crap . The nhs is truly broken ! And i for one don’t trust it !
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So had the GP originally put you on the 2 week pathway? And the hospital then downgraded it? What a mess 😥
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Looks like you may have a case against the hospital then? I’d start with PALS and go from there?