to ask you to help me decide by sharing your experiences?

(131 Posts)

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Howaboutthisone Fri 03-May-19 23:41:29

So, my periods have been getting gradually worse for the last year. I've been put on Tranexamic acid, Mefanemic acid, and told to combine the two. Over Easter weekend I was going into week 4 of my period (despite being on combined pill) and the flow got so bad I was (tmi) flooding and destroying two pairs of trousers in two hours. Needed iron tablets as reserves had gotten low. Was given magical norethisterone which stopped the flow and I've had a week's break. I've had a scan. I have fibroids and a possible polyp.
Seen private consultant today who can't speed things up unless I pay for private treatment but gave me the following options. Really interested to hear about people's experiences/opinions.
She's said that really what I need is a hysteroscopy which I can get on NHS by waiting for my appt which could take up to 9 months even with my urgent referral. Or I could pay private and have it for £2500, raising to £4000 if they remove anything as part of it.
Other options:
1)Try Mirena coil
2)endometrial ablation- can wait for my NHS gynae appt to come though and hope they offer it, or pay £4400 to have it done privately. We could scrape the money together, but it would be from savings we've managed to squirrel away rather than from surplus cash, and I'd feel like I'm stealing a holiday/experience from my kids even though DH has pointed out that nothing is really more important to them than their and our health. He's a good'un.
3) Hysterectomy-I think the consultant would do this privately but obviously wouldn't be first course she'd recommend.
4) Wait up to 9 months for my NHS appt with consultant and take the letter explaining today's findings in the hope I'd have some control!
5) Doing nothing and just riding it out -This isn't really an option as my periods (if you can call them just that when they're lasting all month) are controlling and limiting my life.
I could really do with hearing from others with similar situations or even just hearing another take on things.

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OwlBeThere Fri 03-May-19 23:46:54

I had a hysterectomy at 26 for different reasons, but before that I’d had horrific periods where I’d pass out from blood loss etc and when they went in to do the operation keyhole, they soon realised I was riddled with endometriosis and adenymosis (I’ve spelt gosh wrong, dyslexia hits sorry) and the up shot is that it was the best thing that ever happened to me. No more searing pain, no more fainting. I never knew how bad I’d felt til I didn’t feel it anymore.
Of course that comes with needing HRT to stop my bones thinning etc, but as far as I’m concerned it was worth it.
I don’t know if that helps at all. Good luck xx

Suze1621 Fri 03-May-19 23:50:17

Mirena coil worked for my sister in similar circumstances so may be worth a try.

Suze1621 Fri 03-May-19 23:51:31

Marina coil worked for my sister in similar circumstances so maybe worth a try.

Suze1621 Fri 03-May-19 23:52:10

No idea why that posted twice!

DramaAlpaca Fri 03-May-19 23:52:11

The Mirena coil worked for me too, stopped my debilitating periods completely.

Howaboutthisone Fri 03-May-19 23:52:49

Thanks both. I'm currently leaning toward me trying the Mirena while waiting for my NHS appointment to come through so I can at least say I've tried it. Really unsure at the moment though hence the post.

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Vellia Fri 03-May-19 23:53:20

Is it possible to be on the waiting list for a hysterectomy while trying the Mirena coil?

Vellia Fri 03-May-19 23:53:52

*hysteroscopy, sorry

Howaboutthisone Sat 04-May-19 00:04:57

At the private consult she said that she could fit the Mirena there for £160 or (she advised me) to go to the family planning clinic and ask them to fit one. If I go down this route I could go there next week I think and get one fitted and my NHS referral is still in the system and I haven't yet had even initial appt with them so I could have tried it out before my appointment comes through I think in theory.

OP’s posts: |
DramaAlpaca Sat 04-May-19 00:14:13

I think the Mirena might be worth a try then. I know some women don't get on with it but for me it was truly life changing. It sounds like you are going through a horrible time, so it might be good to get something sorted quickly while you wait for an appointment. And if it works, that's a big win.

RedSheep73 Sat 04-May-19 00:15:00

I've not had problems like yours at all but I have had Mirena for 11 years, and I have to say it is fantastic - I barely have a period at all. I don't think there are any downsides, it's a bit unpleasant getting fitted but no worse than a smear test, and it can stay in for 5 years. So I would say that was well worth a try. Surely they would just give you one on the NHS in any case, if you wanted it?

Howaboutthisone Sat 04-May-19 00:22:48

It's good to hear positive Mirena stories for a change thank you!
Yes- I can get one on nhs. My gps surgery is overstretched as are many so if I decide to try it I think my local family planning clinic will be my best bet.
Really appreciating you sharing your experiences. I know mine won't be exactly the same but it really helps. Thanks!

OP’s posts: |
Onlysocks Sat 04-May-19 00:25:47

I had periods like the one you describe for several years. I didn’t realise it was so far from normal until I passed out from anemia. I’ve had a mirena coil for about three years and love it. It took about 3-4 months before my periods completely stopped but in that time all I had was a light period for about 4 days each month. No waiting around for post-surgery recovery, no side effects, no brainer

Howaboutthisone Sat 04-May-19 00:39:40

@Onlysocks I'm so glad you found a solution. It's awful isn't it?! Another encouraging experience. Thank you!

OP’s posts: |
Reasonstobeearful Sat 04-May-19 00:48:50

Why is your referral taking so long? I would push for the hysteroscopy sooner. If your problems are caused by fibroids and a polyp then it's mechanical in that they need to be treated. Then once they are hopefully you won't need the coil. Our health service shouldn't be making you have a gynae intervention that can be problematic in itself and won't actually cure the cause of your problem.

I would go back to your GP and get put on the two week pathway as while your growths are very likely benign they may well not be and the only way to find out is a hysteroscopy and biopsy followed by removal and histology.

boredpanda84 Sat 04-May-19 01:00:58

The mirena worked for me...I did have an increase in bleeding for the first six weeks though and apparently that's not unusual. After that point, I didn't have a period in 7 years and totally loved it. I would try this in your shoes I think as it can be working whilst you decide on another course of action is it's required.

Howaboutthisone Sat 04-May-19 08:05:52

Thank you for these replies. I don't understand why it's taking so long either. I was put down as an urgent referral and my gp has also now written to expedite my appointment but still no movement.
I think this is why I'm so undecided. There seems to be no urgency for the hysteroscopy as I've had a scan and they've seen the fibroids/polyp and don't seem concerned that they could be more sinister. But I don't understand how they can decide this without the hysteroscopy either to be honest. I think it's down to my age (38) which seems crazy to me.

Like I said I am leaning towards trying the Mirena but I agree that it doesn't treat the underlying problem really. That's why I'm wondering whether to just book in for the private one or even just go for the ablation.

OP’s posts: |
Leyani Sat 04-May-19 08:14:02

Try Mirena - I was a step away from hysterectomy but it’s a biggish operation and recovery can be lengthy. Glad I did, whilst still have migraines occasionally and a light period (pad every 6 hours type), it’s improved my quality of life hugely! So much so that I’m not tracking periods at all, if I’m on, it’s just not an issue whereas before I’d have to organise my life around them. After first coil, it got better quickly but took about 3-4 months to settle down properly

Howaboutthisone Sat 04-May-19 08:19:32

Interesting to hear about the settling period. I hope you don't mind me asking what the issues were during this time? Thank you!

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GnomeDePlume Sat 04-May-19 10:44:50

Endometrial ablation worked for me. I think what helped was that the fibroids were actually within the uterine wall. This meant that there were no obstructions to the ablation procedure.

Procedure was done under GA. No problems afterwards and my periods stopped completely.

By the sounds of things it would be worth giving the Mirena coil a go but keep your referral options open.

MingeOnFire Sat 04-May-19 10:52:51

Definitely try the Mirena while waiting for NHS appointment. Who has told you it's a 9 month wait? That would be very unusual.

Howaboutthisone Sat 04-May-19 11:05:18

My gp and the private consultant who also works for the nhs in this area.
With the ablation that means no more periods ever yes? Did you have a hysteroscopy first?

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GnomeDePlume Sat 04-May-19 14:32:35

As I understand it the lining of the uterus can regrow over time but I was just a few years off menopause so I havent had another period since (procedure done about 5 years ago I think).

No hysteroscopy. I had a biopsy taken of the cervix (I was having an awful lot of tests done at the time for a different reason so this kind of blurred into all the others). I had an internal ultrasound which confirmed the position of the fibroids.

Method used was NovaSure. Done privately (thank you health insurance!). A few days off work afterwards to get over the GA. Absolutely no problems afterwards. I wouldnt have known I had had it done except that my periods stopped.

Having no more periods was an absolute godsend. I take high dose warfarin so just dont stop bleeding once I start. My periods were heavy enough before I started taking warfarin then once I started on the warfarin they were unmanageable.

Howaboutthisone Sun 05-May-19 08:57:41

That's really interesting @GnomeDePlume I'm glad it helped you.

OP’s posts: |

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