Hysterectomy?

[SoUtterlySickOfThis]

Hi all, looking for advice.

I am 50, have had problematic periods for around six years. Problematic as in flooding, pain etc. Four years ago had a huge ovarian tumor finally diagnosed, big open operation etc. Bleeding still problematic, got diagnosed with polyps and fibroids, got polyps removed but nothing done about fibroids, got a mirena. It sent me batty even with hrt so I got it took out this week privately, no chance of an appointment with my GP.

But now I'm bleeding like a bastard again, honestly it's just not stopping. Here I am early hours Sunday morning changing my big kotex all the time. I'm so fucking sick of this, I think the best thing rn would be to have everything out. Honestly these cramps are unreal.

But even that won't happen because there's such a wait. I haven't even seen my own GP, had to go private to get the mirena out.

Is this what healthcare is in the UK now, bleeding like a maniac and a 28 day wait to see a Dr then a christ knows how long wait to see someone who can actually do something?

Also am I right in thinking I just need a hysterectomy?

Yes, you need a hysterectomy. I’m three months out the other side of one for a massive fibroid and honestly, it’s life changing. I can go out without worrying about whether there’s a loo nearby, I’m so much less tired, have much more energy, and My quality of life is just so much better. Strongly recommend it.

Mind you, I had to wait for 4 years. Hope you don’t have to wait that long.

You will be lucky to get a hysterectomy on the NHS,they will fob you off with a mirena coil. Best thing to do is join something like Benenden it's £11.99 a month, when you have been in 6 months you can have it done privately.

I had a hysterectomy in feb this year best thing I've ever had but I had to do a year of medical menopause before making the decision as I am only 31.

Which could be an option for you due to your age they could keep you on it until you actually reach menopause, it does stop all bleeding and you do experience menopausal symptoms

Thanks all for your thoughts. They've already fobbed me off with a mirena and it hasn't worked. I mean it stopped my periods but it also made me insanely angry at everyone and everything so I couldn't function. Hence paying a private GP to get the damn thing out.

But now it's out I'm bleeding like a murder victim. Again. I am so very very bored of it all.

Plus given my history of massive tumour am worried. It's not as though I'm living in a country where these things are picked up until it's crisis time. As I know to my cost.

So where do I go from here?

I still haven't heard back from my GP despite filling in a form three fucking weeks ago . I paid £150 to get the coil out but I sure as shit can't afford a private hysterectomy.

I'm feeling quite despairing tbh with you.

I had the same symptoms and massive fibroids. Had a hysterectomy on the NHS. Only had to wait there months and feel so much better. Good luck.

Yes you do.

It maybe quicker then you think.

I also suffered constant heavy bleeding and tried coil etc but both came out.

Referred last year to consultant (April) had hysteroscopy (oct) and hysterectomy in June.

During that time I took northisterone (which really did affect my moods badly but pros outweighed the cons) daily and never bled.

You need to request an emergency appointment or if your bleeding so heavily your heart rate is elevated seek emergency treatment today.

They might want to try ablation first.

I was like you but had a hysterectomy a few years ago. Best thing I ever did.

You filled in a form three weeks ago!! FFS! That will just be sitting in a pile somewhere under the Passive Patients - we don’t need to bother with this lot heading. You need to be a squeaky wheel here. Chase up that GP appointment - stay calm but be very clear and detailed about your debilitating symptoms; your medical history gives you another lever too. Be determined, be graphic. Don’t let go. Make this a project that you stay on top of until you get a result.

As with most interactions with organisations these days, no one actually cares, so you have to send the indirect message that it’s going to be easier for them to deal with you than ignore you.

I still enjoy a quiet sneer as I bypass the sanpro aisle in the supermarket every week.

@Nat6999 Are you sure? Most private health insurance does not cover pre existing conditions. This is one of those!

You could perhaps get an ablation but you need to see a consultant who will offer the options.

A private hysterectomy is around £6500. Worst case can you put it on a credit card?

Meantime, badger your GP or maybe fork out for a private consultation (not with a GP- it needs to be a consultant gynae) and then they can write to your GP with the recommendation and it may help speed things up.

Look on the website, it is one of the allowed operations, someone else on Mumsnet joined so she can have her op in 6 months

But you won't know all the details of her medical history or her age (which the annual premium is based on.)

Most private health does not cover existing conditions or you have to wait for between 2-5 years to have cover for an existing condition.

Surely someone doesn't pay £11.99 for 6 months (£72) and get an op costing £6500?

And the monthly/ annual fee varies according to your age and medical history/ health.

Most policies are at least £40 a month and up to £150 a month ( or more.)

@Nat6999 Ok had a look :)

They are different. They are not a health insurance company. What they say (and I've not read the whole site) is that they exist to work alongside the NHS by stepping in to provide an earlier op (after 6 months' subscription) IF you have been referred by a consultant, have an op planned, and the wait is longer than a certain number of week/months. (not gone into the small print there, but they seem to follow NHS waiting times - so I assume if this means the waiting time was 24 weeks and you are told 26 weeks, they will step in.)

I had to wait 3 years for a hysterectomy. Even the day before my op I had the surgeon on the phone to make trying to make me change
my mind and take the pill!!!
after my op she apologised after removing 7lbs of fibroid.
I bled every day after the birth of my youngest until I finally had the op and within 3 weeks I was bouncing around with a new lease of life!! Worth the wait but at the same time utterly ridiculous to have to suffer for r such a long time.
I hope you get success!

Was your ovarian tumour malignant?

I had a hysterectomy 10 weeks ago after 5 years of horrendous fibroid bleeding. Anaemia, panic attacks, flooding, clots the size of an egg!

They tried ablation, Mirena, mini pill and nothing worked.

I wouldn't rush to have a hysterectomy. I only found out afterwards that there's a significant risk of having a prolapse afterwards! Plus the scar is huge and your stomach stays swollen for ages, if not forever. I went straight into surgical menopause and my hair is currently falling out. I regret having the operation, to be honest.

There are other treatments for fibroids. Ask about embolisation.

Doingjustfine I had mine done keyhole, one night in hospital & 4 tiny cuts.