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[Clovie]

I feel on the verge of a breakdown. it's 4am i haven't eaten and I can't sleep.
I cannot cope.

Where to start - a bit of background, I'll try keep it brief as I can.
I've posted before about my 'problem', I feel I am constantly at war with the NHS about my 'periods' . I feel not listened to, like a liar, treated like a freak, a deluded neurotic woman, who has no say over her own treatment....

I am 61.
My periods have never stopped.
I am still bleeding, predictably, regularly, reliably, and for a predictable number of days (currently every more or less/around 20 days). No red flags, no pain in my abdomen, no spotting between periods no bleeding after sex etc etc.

I am prescribed 100mg Utrogestan and estrogel daily. I've been taking this regimen for 2 years.
This was supposed to stop my 'periods' but it hasn't.

I put 'periods' in inverted commas because my doctors will NOT refer to them as periods. They say my bleeding is abnormal and will be treated as such even though I have never gone through menopause and I still get all the usual recognisable PMT symptoms before my bleed.

I have just had my HRT review. I explained all the above. I told the nurse I was happy that my periods were finally getting lighter and shorter and I felt I was getting closer to stopping finally.
Yet - I am being sent for another scan, in 3 weeks time, the letter refers to PMB. Post menopausal bleeding. I am not yet menopausal. I just got the appt through out of the blue without any explanation why. She had given me a prescription for more HRT at the review, no phone call from her or a doctor or anything, she said if she didn't call me back that afternoon then all was fine. She never called me!  Just this appt letter arrived on my phone!
I am terrified beyond belief.

I have an absolute terror of anything medical and severe health anxiety around this whole issue.
Ever since 2 years ago when I had all this with my GP, where they said I couldn't POSSIBLY be having periods at my age (I was 59) and it must be sinister bleeding.
The GP actually told me I had 'womb cancer' in those exact words!!!!
Cue 6 weeks of absolute HELL waiting for the scan . I cannot tell you how ill I made myself in that time.
Well, I had the scan and the sonographer told me I still had the womb of a menstruating woman and no problems at all, my lining was thin, no fibroids, ovaries OK etc etc.
So I WAS actually having periods still.  ( but they have never been acknowledged as such since!).
I had a follow up appt with a gynaecologist who would not refer to my bleeding as periods and insisted it was abnormal bleeding and tried to get me to have a Mirena coil. I cannot tolerate synthetic progesterone, I was diagnosed at the start of my HRT journey as intolerant hence the Utrogestan in the first place. Had the sonographer not been lovely and explained everything she saw to me on the day of the scan then I would have been led to beleive I had some awful disease by the consultant as he NEVER said everything was OK. Said my bleeding was abnormal and not periods. Yet after a blood test to check my iron I was not called back to him. And that was that. No reassurance about the scan being OK. Nothing. No acknowledgement that I had been right about my periods. Nothing.

I have been left feeling like a freak ever since. A neurotic woman who is deluded thinking I am still having periods, like I am in denial or something... I have grown to feel shame disgust and hatred for my own body each month when I bleed. i am in despair

and now I have to go through it all again. I understand that a scan is probably no big deal for a lot of women but it absolutely is for me. In the extreme. I have 3 weeks of absolute hell in front of me.
They told my husband (who speaks to them on my behalf with my authority, such is my distress) that I cannot have HRT unless I go for this scan. I am stuck. My symptoms such as hot flushes mood swings etc are unrelenting and debilitating without HRT.
I feel like a caged animal.
I am spiralling into a crisis.
No-one listens to me. No-one takes me seriously.
What if this time I don't get a nice sonographer who will go through what she sees with me?
What if I have to wait for results with the same consultant who will not reassure me?
and will try push me into a mirena coil like he did last time despiye it not being suitable for me and the ordeal of any medical intervention is abhorrent to me?
I am terrified of course, I mean, what if I DO have cancer?  I mean, don't feel I have any reason to think so, no red flags, apart from the GP saying my bleeding is ABNORMAL!!!!  and is classed as post menopausal bleeding despite my periods never having stopped?
The bioidentical hormones arent strong enough to supress my own hormones

Please please, if you've read this so far, thank you from the bottom of my heart, I have no-one apart from my husband to talk to about this,  I feel like I am going crazy. I hate my body. I feel like I am going mad.
its now 5.30am and I feel like I am a caged animal being led to the slaughter...    I know it sounds dramatic but I have such bad bad health anxiety that I cannot shake off no matter how I try....


 
 


 

[MrsMitch]

OK, Clovie,  it's good you have your husband to help you through this. My mum didn't stop regular periods until she was 66. She never missed one & then they gradually stopped over the course of the final year.
It's very likely you will get a nice sonographer, the ones I've seen have always been lovely & if you let them know what you've been told & how anxious you are they will tell you what they see.
If your husband advocates for you he or both of you need to start correcting every health professional you see & firmly explain you ARE having periods not pmb. Keep correcting them whether they like it or not.
You absolutely can refuse the Mirena - I did. They cannot force you. But again with your husband's help tell them you will not have it.
Looking at the bleeding through the month I get off & on, I do wonder if mine is because my periods never completely stopped but a GP early on in my HRT journey decided to prescribe hrt as if I had. So I've been down the scan, TVS route & was OK. Some months I get a 3 day light bleed other months just daily spotting most of the month but as it always stops, I don't do anything about it. I was told it needs to be continuous for over a month to report it again.
There are women who carry on having periods very late - apparently my nana (mum's mum) did too.
You are not a freak or neurotic. You're simply one of the many women whose body doesn't fit into the NHS stereotype & your GP doesn't have the knowledge to know how to help.
Are you able to see a menopause specialist either NHS which is a long wait or private?
I'm sure others will be along to offer advice.
But the bottom line is our bodies all work differently & unless you get someone who is experienced you won't get the right help.

[Dotty]

Hi it could be that you are still in peri menopause and that is the cause of the bleeding. If that’s the case then Utrogestan will not stop the bleeding. If you are in peri then you may be better on a Sequi regime.

If you are post menopause and you’re suffering with breakthrough bleeding and there is no cause for it then the guidance would be to increase the Utrogestan or use a different progestin. There is a new progestin just become available called Nalvee. It is the same progesterone that is in Femoston Conti….a kinder progesterone .

Hope you find something that works. Unfortunately it is trial and error. I have undergone hospital appts and had investigations 5 times….everything was ok every time.

[Clovie]

OK, Clovie,  it's good you have your husband to help you through this. My mum didn't stop regular periods until she was 66. She never missed one & then they gradually stopped over the course of the final year.
It's very likely you will get a nice sonographer, the ones I've seen have always been lovely & if you let them know what you've been told & how anxious you are they will tell you what they see.
If your husband advocates for you he or both of you need to start correcting every health professional you see & firmly explain you ARE having periods not pmb. Keep correcting them whether they like it or not.
You absolutely can refuse the Mirena - I did. They cannot force you. But again with your husband's help tell them you will not have it.
Looking at the bleeding through the month I get off & on, I do wonder if mine is because my periods never completely stopped but a GP early on in my HRT journey decided to prescribe hrt as if I had. So I've been down the scan, TVS route & was OK. Some months I get a 3 day light bleed other months just daily spotting most of the month but as it always stops, I don't do anything about it. I was told it needs to be continuous for over a month to report it again.
There are women who carry on having periods very late - apparently my nana (mum's mum) did too.
You are not a freak or neurotic. You're simply one of the many women whose body doesn't fit into the NHS stereotype & your GP doesn't have the knowledge to know how to help.
Are you able to see a menopause specialist either NHS which is a long wait or private?
I'm sure others will be along to offer advice.
But the bottom line is our bodies all work differently & unless you get someone who is experienced you won't get the right help.

I cannot thank you enough for this reply you've no  idea how much it helps. I do feel like I am completely unhinged about this. Both my husband and I do try to correct the medics when they say bleeds when I one hundred percent completely believe I am having periods still.  They will not have it.
I didn't mention, forgot, at 4am to mention that the HRT nurse had written on my notes, when read out to my husband, something like that I am having almost continuous bleeding!   I absolutely did not say that!!!!!! and thankfully my husband was there as a witness. I told the truth which is I am 'bleeding' every 20 or so days for 5 days with nothing in between, that I get the PMT symptoms beforehand which are noticeable, to me AND my family.
When my hubby spoke to the doctor on phone later in the day and corrected what the nurse had put, she just fobbed him off saying, nonetheless, bleeding at my age is ABNORMAL.

I am at my wits end. I am terrified, I feel like a piece of flesh with no say in my life. I am distraught.
I would start anti-depressants but none in the past have ever worked for me AND they take 6+ weeks to work anyway!

I feel I have no choices and nowhere to turn.

[sheila99]

Just wrote a long reply and it hasn't updated the post 
 The same thing happened to me. Aged around 60 I happened to mention the 2 recent periods I'd had and that led to urgent referral for 'unexplained bleeding'. I learned to keep my trap shut after that, carried on with sequential utro and never mentioned periods again (I could truthfully say I had no unexpected bleeding  ). They aren't watching how and when you take utro and the amount prescribed is the same for both. If you aren't meno utro is never going to stop you bleeding, better to leave conti until your body is ready for it.
You're not alone and you're not a freak. The problem is ignorance within the medical profession who don't know that some women aren't meno til their early 60s.
  If your anxiety and insomnia are meno symptoms you might ask for a higher dose of oestrogen to control them.

[Clovie]

Hi it could be that you are still in peri menopause and that is the cause of the bleeding. If that’s the case then Utrogestan will not stop the bleeding. If you are in peri then you may be better on a Sequi regime.

If you are post menopause and you’re suffering with breakthrough bleeding and there is no cause for it then the guidance would be to increase the Utrogestan or use a different progestin. There is a new progestin just become available called Nalvee. It is the same progesterone that is in Femoston Conti….a kinder progesterone .

Hope you find something that works. Unfortunately it is trial and error. I have undergone hospital appts and had investigations 5 times….everything was ok every time.

Thank you Dotty!  I really appreciate your reply.
i am perimenopausal, my periods have never ever stopped. i used to be on sequential but I couldn't sync my withdrawal bleeds with my own cycle so was bleeding too much and getting anaemia. I was put on continuous which was meant to stop my bleeding, but it hasn't, its still regular, predictable for a defined length and with PMT beforehand. So, to me they are periods.

I really am glad that your investigations turned out well, and thank you for the reassurance there , appreciate it so much. 

[Clovie]

Just wrote a long reply and it hasn't updated the post 
 The same thing happened to me. Aged around 60 I happened to mention the 2 recent periods I'd had and that led to urgent referral for 'unexplained bleeding'. I learned to keep my trap shut after that, carried on with sequential utro and never mentioned periods again (I could truthfully say I had no unexpected bleeding  ). They aren't watching how and when you take utro and the amount prescribed is the same for both. If you aren't meno utro is never going to stop you bleeding, better to leave conti until your body is ready for it.
You're not alone and you're not a freak. The problem is ignorance within the medical profession who don't know that some women aren't meno til their early 60s.
  If your anxiety and insomnia are meno symptoms you might ask for a higher dose of oestrogen to control them.

Sheila, that is spooky! Spooky that my husband and I just had this exact conversation, it would be the easiest thing in the world to have just gone in to the review and said my periods had now stopped!?!
Instead I was honest. and I am now being put through the wringer AGAIN for my trouble. I know I seem over dramatic about it but I do have overwhelming health anxiety so it is a massive huge deal for me whereas any other woman might not be concerned about it at all OR might have some level of anxiety. for me the next 3 weeks will be utter hell. 

Thank you so much for replying, its good to be able to talk to someone other than my hubby as i feel he imust be sick of me (deep down!) banging on about it literally nonstop, it must be hard for him to deal with me it really must... 

[bombsh3ll]

By the NHS' own definition if you have never gone 12 months without a period you are not postmenopausal.

The character of the monthly bleeds you describe is consistent with ongoing menstruation.

Some even supposedly bright people have a poor understanding of what "average" means, in that the "average" age of menopause is 51.

The same people are also telling young women with POI in their 20's or 30s that they "can't" be menopausal, despite their periods stopping and vasomotor symptoms.

I can understand the rationale for a routine scan just to check everything is OK given you are at the later end, but there is nothing clinically to suspect cancer and no need to keep repeating such scans if normal.

The PMB route is often used inappropriately for bureaucratic reasons as there are limited other options for requesting a gynae scan and they have to put something or choose an indication from a drop down list.

So I think you will have to go this time if your prescription is under threat, however you can ask at your appointment for an external scan to be done which is often perfectly adequate to visualise the endometrium and pelvic organs and can avoid the need for a vaginal probe. If you plan to do this, go with a full bladder.

I would not however keep telling them you are still menstruating, as they are not dealing with this information appropriately which is resulting in you being harmed by stressful and traumatic procedures, and only disclose any further bleeding if it is unusual for you, and that you want investigated.

You could if you haven't already consider a mirena IUS.

[Clovie]

By the NHS' own definition if you have never gone 12 months without a period you are not postmenopausal.

The character of the monthly bleeds you describe is consistent with ongoing menstruation.

Some even supposedly bright people have a poor understanding of what "average" means, in that the "average" age of menopause is 51.

The same people are also telling young women with POI in their 20's or 30s that they "can't" be menopausal, despite their periods stopping and vasomotor symptoms.

I can understand the rationale for a routine scan just to check everything is OK given you are at the later end, but there is nothing clinically to suspect cancer and no need to keep repeating such scans if normal.

The PMB route is often used inappropriately for bureaucratic reasons as there are limited other options for requesting a gynae scan and they have to put something or choose an indication from a drop down list.

So I think you will have to go this time if your prescription is under threat, however you can ask at your appointment for an external scan to be done which is often perfectly adequate to visualise the endometrium and pelvic organs and can avoid the need for a vaginal probe. If you plan to do this, go with a full bladder.

I would not however keep telling them you are still menstruating, as they are not dealing with this information appropriately which is resulting in you being harmed by stressful and traumatic procedures, and only disclose any further bleeding if it is unusual for you, and that you want investigated.

You could if you haven't already consider a mirena IUS.

Thank you so much Bombshell, your post made me feel a little calmer.
You're right, I have no signs of cancer, only problem seems to be that I am 61 and the continuous estrogel and utrogestan has not stopped my regular bleeds. Sorry, my PERIODS.
Honestly I am at my absolute wits end, I dont know how I am going to cope like this until 3 weeks time 

[MrsMitch]

Clovie,  if you take a look on this forum alone there are lots of us who have been through the worrying time waiting for scans, hysteroscopy & then results & by far the majority of us are absolutely fine. I know it's easy to say but if you can focus on that fact & accept that frustrating as it is, you're being well looked after in that you are being investigated,  it may help to calm your anxiety.
I know its hard but you do need to try to focus on the fact at the moment this is a means to an end to continue your HRT. As I said earlier I ignore my bleeding because I understand more about it now. I'm sure you'll find everything is OK.
If you want to get your noted corrected then it may be you need to contact the practice manager to let them know you aren't bleeding continuously.

[Clovie]

Clovie,  if you take a look on this forum alone there are lots of us who have been through the worrying time waiting for scans, hysteroscopy & then results & by far the majority of us are absolutely fine. I know it's easy to say but if you can focus on that fact & accept that frustrating as it is, you're being well looked after in that you are being investigated,  it may help to calm your anxiety.
I know its hard but you do need to try to focus on the fact at the moment this is a means to an end to continue your HRT. As I said earlier I ignore my bleeding because I understand more about it now. I'm sure you'll find everything is OK.
If you want to get your noted corrected then it may be you need to contact the practice manager to let them know you aren't bleeding continuously.

Thanks once again. It means a lot that you have taken the time to reply again. My husband is saying just the same as you and you're both right, of course.
It doesn't help me much though because try as I might I have zero control on this catastrophising mindset I always get with health stuff.
I'm sick of me.
I'm sick of feeling like this, it is awful and there's nothing I can do 

My husband has phoned the surgery this morning about getting copies of the nurse's notes and a copy of the referral letter they sent.
Apparently this request has to go through the doctor first so he can't collect them until tomorrow.  More stress. Why on earth does a copy of my information need to go through a Dr first?  Its a little thing - but added to how I feel it feels huge. 

[Emma]

Usual disclaimers. Here's what the robot says:

Understanding the Medical Side

Why they insist on a scan: In women over 55, any vaginal bleeding is automatically classed as "postmenopausal bleeding" by guidelines - even if the woman feels she’s still having periods. This doesn’t mean cancer is likely. It’s just a rule doctors must follow to be safe.

Her previous scan was fine: Thin lining, normal womb and ovaries, and lighter periods now - all positive signs. That history lowers the chance of anything sinister.

Most common causes of bleeding at this age are HRT-related or hormonal, not cancer. Endometrial cancer risk is low, especially with no red-flag symptoms (pain, heavy clots, irregular spotting, bleeding after sex).

Taking Back Some Control

Advocate via her husband: Since he already speaks for her, prepare questions for the scan day:

Can the sonographer please explain what they see in real time?

When and how will results be given? (Ask for a call rather than a silent wait.)

Clarify: “If the scan is normal again, can my bleeding be accepted as cyclical from HRT/ovarian activity?”

Ask for continuity: Request the same sonographer or at least note her severe health anxiety in the referral so staff handle her gently.

Second opinion: She has a right to request another gynaecologist if she feels dismissed or pressured toward unsuitable treatment (like the Mirena).


When It Feels Overwhelming

She described feeling like a “caged animal” and “led to slaughter” - those are signs she’s in crisis. If she feels she cannot cope or is at risk of harming herself:

In the UK, she can call 111 for urgent medical help, or 999 in an emergency.

Call Samaritans (116 123, 24/7 free) to talk to someone right away.

Tell her GP explicitly: “I have severe health anxiety and I am in crisis waiting for this scan.” They may fast-track mental health or support services.

Bottom line:

Her bleeding is most likely explained by hormones and HRT.

The scan is a precaution, not a verdict.

She has the right to be treated with respect, have things explained, and refuse treatments that don’t suit her.

She is not a freak, not alone, and not without options.

[Clovie]

Usual disclaimers. Here's what the robot says:

Understanding the Medical Side

Why they insist on a scan: In women over 55, any vaginal bleeding is automatically classed as "postmenopausal bleeding" by guidelines - even if the woman feels she’s still having periods. This doesn’t mean cancer is likely. It’s just a rule doctors must follow to be safe.

Her previous scan was fine: Thin lining, normal womb and ovaries, and lighter periods now - all positive signs. That history lowers the chance of anything sinister.

Most common causes of bleeding at this age are HRT-related or hormonal, not cancer. Endometrial cancer risk is low, especially with no red-flag symptoms (pain, heavy clots, irregular spotting, bleeding after sex).

Taking Back Some Control

Advocate via her husband: Since he already speaks for her, prepare questions for the scan day:

Can the sonographer please explain what they see in real time?

When and how will results be given? (Ask for a call rather than a silent wait.)

Clarify: “If the scan is normal again, can my bleeding be accepted as cyclical from HRT/ovarian activity?”

Ask for continuity: Request the same sonographer or at least note her severe health anxiety in the referral so staff handle her gently.

Second opinion: She has a right to request another gynaecologist if she feels dismissed or pressured toward unsuitable treatment (like the Mirena).


When It Feels Overwhelming

She described feeling like a “caged animal” and “led to slaughter” - those are signs she’s in crisis. If she feels she cannot cope or is at risk of harming herself:

In the UK, she can call 111 for urgent medical help, or 999 in an emergency.

Call Samaritans (116 123, 24/7 free) to talk to someone right away.

Tell her GP explicitly: “I have severe health anxiety and I am in crisis waiting for this scan.” They may fast-track mental health or support services.

Bottom line:

Her bleeding is most likely explained by hormones and HRT.

The scan is a precaution, not a verdict.

She has the right to be treated with respect, have things explained, and refuse treatments that don’t suit her.

She is not a freak, not alone, and not without options.

Thanks for this Emma, it helps.
I'm not at risk of hurting myself or anything, I just spiral deep into anxiety at times like this, always have done. I can't regulate my emotional responses. 

[sheila99]

Perhaps it's time the guidelines were updated as clearly the assumption that everyone is meno by 55 is just plain wrong and leads to unnecessary worry and intrusive procedures for those women still having perfectly normal periods.
  I've also been told by a meno specialist that I can't possibly be having periods at 57 (before any hormone treatment) because apparently 'all women are meno by 54'.

[Clovie]

Perhaps it's time the guidelines were updated as clearly the assumption that everyone is meno by 55 is just plain wrong and leads to unnecessary worry and intrusive procedures for those women still having perfectly normal periods.
  I've also been told by a meno specialist that I can't possibly be having periods at 57 (before any hormone treatment) because apparently 'all women are meno by 54'.

I totally agree!!!!! 
This was said to me too.
In fact a Dr at my surgery actually told me I had womb cancer, not 'lets rule it out' or anything,  but no - I had womb cancer as my periods could not possibly be periods. (I didn't, the scan showed age 59 I had the womb of a menstruating woman)
Its so frustrating and it's scary as hell.