Extreme flooding at 70 years old

[Pigriver]

Posting for advice as I am beyond frustrated. Mum is 72 and has had slight bleeding since Christmas. Had a vaginal ultrasound, scope and biopsy earlier this year. At this point they found nothing untoward other than a slight thickening of the womb. Should have prescribed oestrogen but she only got this 3 weeks ago. Been given antibiotics 5 times for UTI that were actually just blood in urine!
The bleeding started again in June and has become progressively worse. In the last week has progressed to flooding when moving. Through 3 large pads and into clothes. During one particularly distressing incident all over the bathroom floor. Looked like a murder scene. Rang GP who advised 999 who initially refused to come and when the finally came refused to take her in as after 5 and no capacity to scan.
Had a scan 2 days later, vaginal again. Bleeding so bad the couldn't actually see anything.
Booked in for an exploratory op on Thursday with the promise of 'doing what needs to be done' but no idea what this could be.

Everything I read online suggests that this is highly irregular and required A&E and treatment but hospital and GP very lacklustre response. She is now anemic and struggling to walk due to weakness from blood loss.

Is there anything else I should be pushing for?

A&E. Ultrasound uterus, MRI lower abdomen. That much bleeding is very concerning.

Sorry, missed Op on Thursday. Bed rest. iron rich food esp red meat taken with orange juice/vitamin C. Plenty of fluids.

No this is not normal. But you say that she is booked in for an exploratory op (EUA) on Thursday?

If she bleeds again or feels like she is about to faint, i would suggest another trip to A&E. Do you know whay her blood count was? Did tgey say she is anaemic? Is she on sny blood thinning drugs?

When was the last time she had blood tests?

You can buy her over the counter liquid iron supplement like this https://www.boots.com/vitabiotics-feroglobin-capsules-30-capsules-10131412

To start taking straight away. I hope the scan reveals a benign cause.

I am now mid 70s. When I had this degree of post menopausal flooding in 2022, I went to A & E and they put me on a fluid drip and also a tranexamic acid drip. The bleeding slowed down after about three hours.

The cause of my bleeding was large, degenerating fibroids (I'd had a previous diagnosis of fibroids some years before and had also had a bleeding uterine polyp removed). I also had a thickened endometrium for which biopsies were taken. I had endometrial hyperplasia without atypia, which is low risk for developing abnormal cells.

I had ultrasound and internal ultrasound, a CT scan and an MRI scan because bleeding after menopause is considered potentially malignant until proven otherwise and I was fast tracked for the scans.

Unfortunately the radiographer who had done the initial ultrasound report considered that one of the fibroids, which had enlarged in size over the preceding 5 years to around 10cm rather than shrink, looked highly suspicious for a uterine leiomyosarcoma, which is a very fast growing malignancy with a poor prognosis and total hysterectomy was recommended. Because of the size of the three fibroids, my uterus was enlarged and I would have had to have had a large vertical excision to remove the uterus.

However, the radiographer who reported on the MRI considered it was a highly vascular degenerating fibroid (it can be difficult to differentiate between the two). The MDT agreed to conservative treatment and I declined total hysterectomy in preference to trying hormones to reduce the thickness of the endometrium.

I had a Mirena coil fitted to release low dose progestin but that expelled a week later. I was then put on 12 months of low dose Provera which did control the bleeding and reduced the thickness of the endometrium to the width expected in a postmenopausal woman.

Your mum needs to ask her consultant about blood test results and starting prescription strength iron supplementation. I became very anaemic with low ferritin and was put on ferrous fumarate for several months.

I hope she can get this sorted.

Feroglobin contains only 17mg per capsule. If she is anaemic she will need a much higher dose.

The prescription strength ferrous fumarate is 210mg per tablet. These can be bought over the counter but her GP or consultant should be discussing monitoring her iron levels and the need for supplementation

Absolutely, but she can take the liquid one now to help a bit until she gets appointment, bloods and prescription.

See, this is the response I expected. Yes it is very concerning and NHS website says A&E job. But seemingly all healthy professionals are rather blase about it all.

Oh yes we are sorry you've waited 8 months for the suggested estrogen.....or that they repeated said she had a UTI and prescribed antibiotics.

She hasn't had an MRI or CT. They did a hysteroscopy which had to be carried out under general due to how much pain she was in. This is when they said she was ok (slight uterine wall thickening) but things have progressed rapidly since then.

I live 70 miles away and get so frustrated as she explains the repeated confusion and downplaying by the health care system. They can never see the GP and are sent to urgent care but then seem to be at the doctor's a lot. It's so far removed from my experience of the NHS it's laughable.
They did bloods at the pre op assessment last week but no results from these. She isn't aware of who her consultant is or if she even has one.

I think I need to try and go with her on Thursday which is a logistical nightmare given a full time job, 2 kids and only one family car!

I think you should go with her if you can.

Does she have access to her medical notes via the GP online record system or via the NHS app?

The local NHS Trust will have a pathway for referral for postmenopausal bleeding - these are often posted online and there are also NICE guidelines available online for older women with bleeding on HRT and for older women with bleeding who are not taking HRT. There are also guidelines for suspected ovarian cancer. These are worth reading.

You've said: "Booked in for an exploratory op on Thursday with the promise of 'doing what needs to be done' but no idea what this could be."

Do you know what the "exploratory op" on Thursday involves? Is this laparoscopy under GA or another hysteroscopy? Ask her whether she been given pre-procedure leaflets explaining what to expect on Thursday.

Try and establish whether she has a named gynaecologist yet.

The GP may not have access to the blood test results that were done in hospital but you can ask the hospital for these.

Unopposed oestrogen (ie oestrogen with no progesterone) can also cause the endometrial lining to thicken and potentially bleed.

Does she recall for what specific reason she was placed on oestrogen without progesterone?

I found this Royal College of Obstetricians and Gynaecologists (RCOG) guideline useful:

Management of Endometrial Hyperplasia (Green-top Guideline No. 67)

https://www.rcog.org.uk/media/knmjbj5c/gtg_67_endometrial_hyperplasia.pdf

This page is also useful:

https://www.menopausecare.co.uk/blog/bleeding-on-hrt

I'm sorry to sound blunt, but what are you waiting for? Get her down to A+E asap. Speculating online about what they might or might not diagnose elsewhere is a waste of time. Your poor mum. I know she is having investigations on Thursday, but she will lose a lot of blood in the meantime, that's awful and must be very frightening for her.

No one knows what is causing it, but at the very least in A+E they will scan, investigate, rehydrate, and if haemoglobin is on the floor might IV iron infusion and Tranexamic Acid to stem the bleeding. If she is not in good pre op shape then the procedure on Thursday might be deferred anyway.

This is not normal, she must be in bits and scared, the poor woman.

If there are several GPs at your mother's practice, I'd encourage her to ask for a different one when she does need to see or speak on the phone to a GP in the future if the current one is dismissive and disorganised.

Also, the hospital should be asked to send copies of all GP follow-up letters and copies of scan reports and investigation reports to the patient. If these are not sent, the consultant's secretary can be asked to provide copies. The patient has the right to ask for these.

Prior to Thursday's appointment A & E may not scan or investigate but they might put her on a fluid drip and tranexamic acid.

Or they may be able to get her a bed on a gynae ward for stabilisation and rapid assessment.

Hi @Pigriver This situation is a complete mess.
This is a very urgent situation.

Your mum may need a blood transfusion if she is bleeding as much as you describe- iron tablets won't do the job.

I am extremely puzzled why you said she was prescribed estrogen.

Do you mean vaginal estrogen ,or systemic HRT? Because no one aged 70 (or any age!) should be prescribed systemic estrogen if they have undiagnosed bleeding from the womb. I assume this was vaginal estrogen, which is different.

Losing that amount of blood is serious. She ought to be prepared, emotionally, for a hysterectomy when she is admitted for investigations.

Does she know what investigations? I'd be thinking that her first investigation missed something. Thickening of the womb lining at 70 is not normal. It's now almost a year later and it's become worse.

Please if you can, advocate for her. It may be fibroids but you and her must realise it could be endometrial cancer. Can you find out who her consultant is and contact them? And go with your mum for her appt?

@koffielepeltje I think OP may mean vaginal estrogen.

She was given oral tranexamic on Tuesday but it had no effect.

I would love to drop everything and take her to A&E but I like 1.5 hours away and have a full time job and small kids.
She called 999 (instructed by GP) and they refused to come. When they did come they refused to take her. She has seen multiple health care professionals but no one seems to be doing much until this op on Thursday.
No one has suggested admitting her or doing anything to make her comfortable.
Surely the gynecologist who saw her last week and witnessed bloody pumping out of her while trying to do a vaginal scan would have suggested treatment?

I will ring her tonight and see if/when she started the estrogen and whether it has progesterone. If they have any paperwork and if she has recent blood results.

@karrapo we are both worried but she only actually told me the full extent of the most recent heavy bleeding last night. I'm a teacher and haven't been able to organise time off to see her.

Thanks to those who made suggestions of things to ask.

Does your mum have a husband or partner? Or a close friend who can help her?

Does she find it hard to advocate for herself with medical issues?(ie ask enough questions.)

Maybe she needs to call her GP and explain how things are- GPs are the ones to chase the consultant.

I doubt very much she has been given systemic estrogen- far more likely it was vaginal cream/ tablet to help with her other symptoms.

HRT (estrogen) is for menopausal symptoms and you have not mentioned your mum having those.