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!

Ask about esyma. It's for fibroids but also stops your periods.

Thank you so much all. I'm really learning so much more from these replies. @PookieDo it wasn't that you scared me but gave me a different perspective which is exactly why I posted here. Thank you!
I'm going to research the thing mentioned in last post now.
And yes @Gynaegirl it seems crazy to me that I'm being told it's being put through as an urgent referral, then expedited also and still no progress!

@hopeishere ah I hadn't heard of that name but the consultant did mention a 'wonder drug' for fibroids which was currently under review for links to liver damage. Googling Esmya and I think this is the one.

Mirena has changed my life but I had two laser ablations first and don't have fibroids although I do have endometriosis. I'm sorry you're faced with such long waits. I'm with your DH though. I've never regretted a single £ spent on my health. It's important!

@Phineyj thanks! I do agree deep down. What is more important to spend the money on? It's just that we live where there is an NHS so I suppose that throws an extra decision in the mix. NHS is under so much pressure now that private is seeming like the option if you just cannot wait. I think I just need to work out if I can.

@TwoBlueFish how long did it take to get to the point where it was resolved and between increase of intervention?

Sorry @TwoBlueFish I've just reread and seen 12 month between diagnosis and hysterectomy. How long was it between interventions and decisions to take it up a level if you don't mind me asking?

My decision making was very much coloured by the fact said NHS had taken a year of very slow investigations to even diagnose that it was 'probably' a gynae issue. I just couldn't wait any longer at that point. The NHS (for all its points) is just not set up to investigate or fix individual patients on a case-by-case basis. On the plus side, it sounds like you may have completed your family, whereas I had the additional worry of the damage it was doing to my fertility.

I had a friend with similar issues. Horrific pain & periods. Her Consultant put her on the pill continuously with no breaks for periods until her NHS surgery. It's not dangerous apparently and he said it's commonly done to give your womb time to rest & recover a little (especially if endometriosis is also present). I'd go that route. My friend 'felt like a new woman' during the three month wait for surgery after the consultant appt.

hi @howaboutthisone yes it is associated with liver damage but that has been resolved so I get regular liver function tests.

Howaboutthisone

The D&C was to get rid of the polyps & then coil fitted at the same time. It was done under general anaesthetic.

I had a mirena which lightened periods for a year or so and then they returned. Eventually the mirena came out following a particularly heavy period. That was grim.

Had endometrial ablation a year ago and has transformed my life. Wish I'd done it years ago.

Mirena (or some new name) has worked really well for me. Should have had it fitted years ago.

Yes-my family is completed. I've been told that about continuing my pill without the break. The only thing is that I currently bleed all the time, while on my pill, though I've been told to keep taking it as it will still provide contraception and should lighten the flow. Both not really at the moment.
I got through to someone in outpatients this afternoon after trying so many different numbers. I was told that I'm currently likely to get my first appt with the gynae in... SEPTEMBER!!!! That's an urgent referral from March! I can't decide whether to scream or cry at the moment to be honest!
I've put a prescription request in for norethisterone to give me a break again-we'll see what the gp says. I think I'm going to have to go back to her to explain that I can't carry on like this until SEPTEMBER when I'll be first looked at.
Thinking of going to the family planning clinic this week too to get myself booked in for the mirena just to try something else and to avoid settin myself back by the consultant suggesting I try that in my first appt-in September!

Just be prepared you will probably bleed continuously for a few months, they do tell you this. Mine was a continuous pink sludge in between slightly better periods (TMI) but also the signs it’s not settling - clots will dislodge it so if they return go straight back. Myself and a lot of others who have lost with fibroids didn’t realise what was happening and not much warning. Notice from this thread that endo seems more successful than fibroids with an IUS
You just need to make clear that even with IUs this is not resolved - they WILL try to discharge you - they discharged me because I opted to have it back in and I’m back where I started!

Howaboutthisone I would try the mirena coil if I was in your shoes. At least that way you can tick it off the list of 'things tried'.

I agree but if you see them in September and the coil is still ‘settling in’ I 100% guarantee they will try to discharge you

Thank you! Yes- that's where I'm torn on it. At least if I try the mirena in this ridiculous waiting period I can tick it of the list of things to try before escalating to surgery. But I see it as a sticking plaster not a solution for the underlying issue so wouldn't be happy if they decided they didn't need to look any further for solutions if it works in the interim.
The constant bleeding wouldn't be any different to what I have now with my pill to honest so that's one side effect I'd be already used to I suppose.
I'm hoping to find the email addresses for the appointments people and harass them for cancellations!

I just wish I had been that firm the first time round so heartedly agree don’t agree to discharge! Same happened when I didn’t like the depot, they kept saying oh just 3 more months... no I don’t like it!

I was a bit wet and just thought oh well they know best...

it is worth a try!
The sludge is manageable for sure and much preferable!

Generally they will only agree to hysterectomy when you have ticked off the fucking list (same with when I spent 5 years trying to be sterilised) but they are more willing to do ablation - that is definitely worth asking for

I had horrendous periods, became badly anaemic to the point of passing out regularly. I used to have to take strong iron tablets and have injections which used to make me ill. The mirena stopped them completely for years, no more fainting, no more iron injections/tablets. I had it out about 6ish years later when we started trying for a baby.

Thanks both. @CreekyBeaky did you have fibroids present too?

@PookieDo It must be awful feel back at the beginning after all the waiting. This is exactly what I was just saying to DH. Im not happy that this is resolved even with a positive reaction to the mirena. There are still fibroids and polyps there causing problems that will still surely need to be dealt with, even if they take the mirena out to sort them and fit one back in! I'm just in shock I think after being told that it's likely I'll be waiting til September to even start the process of regaining my normal life. This is even with fibroids and polyp already identified. Surely they still need removing and analysing anyway. Is this right @Gynaegirl ?
Really grateful for all of these replies. They're really helping me consider different views and ideas.

Totally the best to go in knowing what you want because you only get 15 mins to make it clear 😂

It is worth trying to tick it off the list but at the same time asking for a follow up scan to see if any changes to the size of the growths. They also need a biopsy for your peace of mind - my consultant was pretty certain they were nothing sinister but I wanted to know so an ablation or laparoscopy will be able to test all the tissue when they remove it and hopefully no more having to worry about ‘the next time’ if it’s successful

With fibroids it depends on how/where they are growing. I did not have a 2nd scan before surgery and mine had grown significantly and he warned me when I woke up he didn’t think he got all the tissue as so big and also cysts not seen on US, and in hindsight I should have had the other procedure (I think it’s myomectomy) but he was already in so went ahead with ablation with the best intention

THEN DISCHARGED ME 😂

Mirena for me did reduce my periods and I had 18 months of good then it fell out then I had 5 months of ok the 2nd time around but it did get me out of tena lady for a while which can only be a good thing

Discharged you knowing you weren't sorted 🤦🏼‍♀️great!
Yes, some respite from it could make it worth it. But also asking for follow up scan to check size etc- great idea!
I'll have a list of things longer than my arm now- I'll still be talking half hour in and they won't have the chance to get me out of there now with all I've learnt here! They'll rue the day they allowed me 6 months of researching 😆

@Howaboutthisone I don’t think so. Weird answer but I remember they had to cauterise my cervix before the out the mirena in but I can’t remember why! It was 14 years ago 😬

I can't quite believe I'm posting this. I emailed the outpatients appointment department this morning basically saying how worried I am about not being seen until September with how much this is affecting my life, and asking them to keep me in mind for any cancellations. Had a phone call an hour later and I have an appointment on Friday! Of this week! I know it's just the first step but I'm so happy the first step is now and not in September!