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

[Howaboutthisone]

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.
Thanks!

The problem with Mirena (for me) is the presence of fibroids and womb shape can make it difficult to stay in there. I’ve lost 2.

I have had no luck with ablation either or 2 mirenas I am not the best person to ask. My ablation has distorted my womb shape and given me bladder nerve damage I’m still bleeding like I was and am going for my next consultation about the next step in a few weeks

And FYI they don’t really make this clear to you ^

You need to know your womb shape and polyps or fibroids will not obstruct or expel it but you can’t know - I now wish I knew before!

My mirena made the bleeding from my fibroids lighter but still constant and it made me crazy. I think it depends on the position/type of fibroids you have. I was told that ablation wouldn’t do anything for the bleeding, and that I’d have to have the fibroids removed at a hysteroscopy and then another mirena, which I refused due to MH. They really push the mirena. I had a hysterectomy in the end, privately because my consultants were awful and obstructive (trying to put me on GNrH androgens when I already have bone density issues). Best decision I ever made.

Get the coil ,while on waiting list for hysterectomy.keep medication close Incase coil dosnt work...either way ,get on waiting list quick for hysterectomy

To be honest OP you have nothing to lose by trying the Mirena.I have no experience personally but as a medical professional I have seen it used in numerous patients and it has been successful in the vast majority. Worse case scenario it expels itself or it doesn’t work but you’ll still be no worse off than now. To the poster who suggested 2 week referral this is not how it works. If the Gp or consultant thought this was necessary they would already have done so. If we referred everyone with fibroids or a polyp in this way the system would not cope and serious cases would be delayed. ( can you tell this type of advice annoys me 😄)

I wouldn't be paying out that kind of money but then I don't have it so would have to wait. So I would be on the waiting list and trying the coil in the meantime.

Sorry for annoying you baggiegirl. I suggested it because it was what my GP did after the ultrasound and I then had a hysteroscopy and removal. Been problem free since and all dealt with quickly.

Thank you for these replies. They're really helping. So sorry @PookieDo that you're having such a hard time with it all. I have to be honest that these are the types of things I was worried about. The private consultant who recommended trying it as a first step had the results of my internal scan in front of her but did see the actual scan if you see what I mean. I assume the scan results write up would say where the fibroids/polyps are and if it would make it a no go but now I'm not sure if this is the case.

My heavy periods were making me steadily more anaemic. Repeated visits to the GP had resulted in a lot of fobbing off. GP couldn't get his head round the idea that heavy periods and long periods are not the same thing. My periods would only last a week but in that time I was losing more blood than could be replaced during the rest of the month.

By the time I was in hospital being tested for a spontaneous DVT (hence warfarin) my blood count was only 50% of what it should have been. Doctor expressed surprise that I was upright and still managing to carry on with life.

Once periods stopped my blood count returned to normal. I had a lot more energy. I hadn't realised that my constant exhaustion was caused by the anaemia.

Being on warfarin for life is a pain in the bum but nothing compared to the problems my heavy periods were causing. That DVT was actually a blessing in disguise and I do rather treasure listening in to the phone call when the nurse practitioner in the DVT unit phoned the GP and gave them a rocket for not having investigated my anaemia properly.

I think position/shape of fibroids is important as to whether an ablation will work. For me the shape and position of the fibroids were both causing the problem (inside the wall of the uterus so preventing the uterus clamping down to stop bleeding) but also meant they weren't in the way for the ablation procedure.

Mirena worked for me too. I had always had heavy periods and developed anaemia which for some reason we never connected to that. Anyway about 18m ago the periods just went mad, I was bleeding for 4 weeks heavily and tranexamic barely did anything. I was very lucky to get referred for tests/scans quite quickly, all the while taking norethisterone to stop me bleeding. This does seem to mess with my mental health though, as does all hormonal contraception.
i ended up with a Mirena 15 months ago, was going for ablation (im 45 and want no more kids) but that wasn't available in the day I went in.
The Mirena has been amazing for me. No bleeding and no side effects. My anxiety is much better and it is I think keeping a lid on some peri menopausal symptoms which were starting to show.
Really worth a try, good luck x

@Howaboutthisone

That’s what I meant - someone actually seeing your womb and the contents and making a judgement
All too often women are being given bad advice about procedures doomed to fail IME!

@gnomedeplume

I had 4 fibroids one growing from the top down 5cm big. This only came to light because it pushed the Mirena out. If I had been investigated correctly before just being told to get a Mirena I could have avoided the months of severe anaemia and horrendous bleeding it caused. Mirena is often seen as a great non surgical option but if can cause a lot more problems than it solves if you don’t have the correct info - OP sounds like you have had a thorough scan which is good. When you have uterine growths it does feel like you cant contract properly - I don’t get ‘proper’ period pains anymore just simply flooding blood for weeks.

I think they just need to be honest that it can happen (expulsion) is way more likely with fibroids and the signs of it. I was told to feel my strings regularly but no one ever explains to you about expulsion properly. You get a tiny leaflet with it and I was not aware what was happening to me the first time at all.

Sorry to bang on

www.ncbi.nlm.nih.gov/m/pubmed/20682142/

If you have all the info you can make a decision right for you. It is more likely to expel with fibroids just no one tells you that . Women should be told!

This is an older study but this is the info people don’t always give you

@PookieDo I couldn't agree more. Heavy periods get fobbed off. You get stock treatments with no investigation. No joined up thinking at all to see that anaemia and the constant stress of dealing with heavy periods will play merry hell with physical and emotional health.

And this costs the individual and the state. Lost days at work, MH treatment, the list goes on. How many women get trapped by heavy periods? Unwilling to risk embarrassing leaks in public, exhausted by anaemia.

I was lucky, I was able to access private health insurance. It wasn't just being able to be treated quickly but having a gynaecologist who took the time to talk, listen and do tests and checks to make sure I was given the most appropriate treatment.

There is no reason not to try a mirena as it might work really well and there are very few serious risks if you are comparing fitting and use of mirena with surgery. Most consultants would consider it ethical to give it a try before more major surgery. Of course it might not suit you and your body in which case the next step is often ablation or if you have fibroids a subtotal hysterectomy. In the first few months women often have very erratic bleeding but the amount one loses lessens month on month so as far as anaemia is concerned so you should get some benefit .if your consultant thinks it is worth a try go ahead before spending a lot of money. They can be miraculous and if they don't suit you are easy to remove.

I'm so glad I posted here. These replies are all so helpful. Thank you!

I'm minded to disagree with lots of people saying there's no harm in trying the mirena - you only need to advanced search on here to find many stories of women asking for it to be removed and having their doctors refuse to do so. It's a real issue with women having control of their bodies taken away.

I would also sound a note of caution re this. It's a long term intervention. By way of contrast, my hysteroscopy took around an hour and a half including recovery (I went a bit white!), I had three days off work and that was literally it. Nothing further.

Perhaps also worth noting that my (NHS) consultant recommended the hysteroscopy as the first option, and advised to come back for mirena/ ablation only if it didn't work.

That is interesting! It's just difficult as I can't just keep the status quo while waiting for the nhs appointment if it's not going to happen very soon. Maybe I need to bite the bullet and pay. Just can't quite get my head around that.

I would honestly really press for a quicker appointment. It's disgusting that you have to wait so long. My GP was quite no nonsense that I needed to go on the two week pathway and my consultant, when I saw her, didn't piss around either, just because a growth is a growth and she was of a mind that it should be investigated promptly. From scan to removal, including biopsy, it was around ten weeks.

Ten weeks?! That's amazing! Well after having the nice norethisterone break from the bleeding hell I've just passed a clot while on the loo and am now wearing a pad to bed. Really hoping this was a blip and not it all ramping up again after so little rest from it!

Which combined pill are you on? Have any of the doctors you’ve seen actually talked to you about the different types of combined pill and the different side effects / how good they are at controlling bleeding and how to choose the right one for you?

Unfortunately so many doctors, even gynaes, don’t seem to know this information and I have no idea why - certainly I’ve been on hormonal contraception for endometriosis for almost all of the last 20 years and no one ever told me any of this!

Info is here:
www.gpnotebook.co.uk/simplepage.cfm?ID=738590790

Best viewed on a computer - if you view it on a phone you have to scroll sideways to read it all.

I’d try to use this info to find a more suitable pill for you and see if that helps - you might find that things improve enough to wait.

Personally I’d rather perform a hysterectomy on myself than have the mirena coil ever again - I’m not sure if it’s wise with fibroids and a polyp either?

Personally I’d be asking for a laparoscopy and hysteroscopy - things like endo and adhesions can’t be seen on an ultrasound or hysteroscopy.