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!

Microgynon 30. I've been on it since 16 apart from two breaks to have my two children-youngest is now 6.
I'll have a look at that link though thanks.

I only had a two month wait for a hysteroscopy on the NHS. It helped massively. No more heavy periods or bleeding between periods.

Mirena coil. It has reduced my 10-14 day heavy periods to a ten minute smear (tmi)

At the same time go on NHS waiting list, if the coil works brill. If not you have a back up plan.

Good luck.

Another option for you - I have endometriosis and am on long-term treatment with GnRh meds. It gives you a fake menopause and will stop your periods pretty quickly - probably straight away. I use a nasal spray called Synarel which I liked especially at the beginning because it gave me the chance to stop it if I felt horrible. The alternative is an injection that lasts a month. I wonder if you could do this while you wait for the hysterectomy? Either privately (it's about £70 a month) or your private consultant might be able to persuade your GP to prescribe it. I've been on it a few years and it's been great, though the first couple of months were hard as it wiped me out. I could have had a hysterectomy but it has worked so well for me as conservative treatment that I haven't felt the need. I still may have one as I have permanent damage due to a late diagnosis - the plan is for me to continue the medication till I'm well past the average age for menopause, then come off it and see what happens.

Consultants won’t (or rather shouldn’t!) give GnRH analogs without an endo diagnosis (or one of the other conditions it treats obviously!). Now I know that menopause / reduction of oestrogen can in some cases shrink flibroids but I don’t think the drugs are licensed for this use (I could be wrong). That doesn’t mean you won’t find a doctor willing to prescribe it off label, but personally I wouldn’t. This might be a long story, so feel free to skip ahead if you’re not interested!

I was on zoladex from 2007-2009 for endometriosis - It was the first time in over 10 years that I had no constant pelvic pain and no heavy periods to deal with (even on the pill I had a lot of bleeding - no one told me I could take pills back to back until I was 23 and I saw probably four different gynaes in that time!), so when they offered me HRT alongside it, I said no thank you!

I stayed on it for two years because it was working well for me - at the end of that I saw an endo specialist who looked absolutely horrified I was still on it and recommended I stop right away. I had been discharged because the drug was working and my GP wasn’t given any info on when to discontinue so just kept going - it’s only licensed for six months use in endo sufferers.

Unfortunately I never saw that Gynae again, because I moved across the country shortly afterwards when I physically had to stop working full time. I’d been diagnosed with ME while on the drug, didn’t think it was related. When I came off the drug I had all the same side effects still, but also pain and heavy bleeding. I was mostly house bound or bed bound due to pain or fatigue.

I had some pretty horrid side effects - the usual menopausal stuff (hot flushes etc, which are worse than they sound!) but also lots of my hair fell out, I lost almost 4 stone, I lost breast tissue, I had zero libido to the point where even being kissed in a sexual way made me feel sick. And then of course the fatigue which was apparently ME and a coincidence.

I went straight back on the pill and waited for the side effects to improve - they didnt. I tried other pills, no change, I tried the mirena coil which was a complete disaster which took me a year to resolve. Went back on the pill.

Eventually five and a half years after I stopped (five years ago now), I came off the pill. After six months of unregulated cycles, my sex drive came back - I thought great, problem solved, all these other things should improve soon. Nope.

I managed to keep hold of my sex drive and gained back the weight I’d lost, but other things stayed the same. After about 18 months I got pregnant and that’s when everything went awry again - by the end of my pregnancy I had massive bald patches, for example, and my libido buggered off again.

I couldn’t produce enough breastmilk despite power pumping and feeding - is it related? I don’t know. About six months postnatally I was diagnosed with fibromyalgia because I am in pain in all over. I have peripheral neuropathy which means constant burning pain 24/7 in all of my limbs, numbness in my back, etc etc. When I stopped breastfeeding, my cycle returned quickly and after a few months my libido returned and my fatigue improved slightly.

I gave it a few months and went back on the pill because my periods were so bad. Within six weeks all of the old hormonal issues were back worse than ever. I gave it three months and things were getting worse so I came off the pill (incidentally also microgynon 30) and hoped things would settle again. That was almost 18 months ago and it’s only now I’m seeing an improvement.

Sorry, this is all very longwinded - what I’m trying to say is that a) gnrh analogs really shouldn’t be used off label because the longterm effects can be catastrophic and b) no one really knows what the longterm effects are because no one is researching it, doctors aren’t reporting things as side effects because they don’t think it’s related. Unfortunately I’ve spoken to a lot of women with eerily similar stories.

OP, weirdly enough it was microgynon 30 I was on too - I too had taken it for years before pregnancy, and again after pregnancy when I reacted very differently to it. My current theory is that the hormonal changes associated with having a baby and breastfeeding have changed the balance of my hormones and it’s no longer effective for me.

Female hormones and their effect on every part of our health (metabolism, weight, body shape, fat storage, hair, skin, sex drive, energy levels, thyroid, etc etc) are not fully known and there isn’t really anyone who’s interested in finding out. I’ve spent the last 11 years trying to figure it out and I’m mostly none the wiser.

Think about other hormones - eg thyroid. If you develop symptoms of hypothyroidism for example, you’ll be tested to check levels and medicated on that basis.

If you have heavy bleeding / pain / other Gynae issues and your doctor is recommending taking hormones, they’re not testing your hormone levels before that to make sure what you’re being given isn’t actually going to make things worse. Each combined pill has a different type of progesterone, some find one more effective at controlling bleeding, others will have a very different response. They also have different oestrogen doses. That’s why so many exist, because different women need different pills but in practice they generally are not prescribed this way. Doctors are very happy to chuck hormones at us but most really have no idea what the effects will be, and often they can exacerbate things.

Microgynon 30 is one of the most progesterone dominant pills available and I found it awful this time round whereas it worked okay for me years ago. Same thing happened with another pill I’d been on for 8 years that suddenly stopped working well for me.

If norethisterone worked to control your bleeding, there are combined pills that contain it - loestrin 30
for example. If that doesn’t work, you may need a higher dose oestrogen and / or a different type of progesterone, and you may need a phasic pill which varies the oestrogen or progesterone dose through the pack.

There are lots of options to try, personally I would start there. Alternatively a progesterone only contraceptive such as implanon or depo provera may work better for you.

I had terrible polyps , which resulted in periods which poured out like a fountain. Life revolved around my periods - or in fact I'd say that I had no life at all. I had a hysterectomy at 35 and it was the best thing I ever did. I got my life back, hallelujah.

MountainDweller I’m so sorry, I didn’t notice you saying you were on synarel long term, I never would have gone into so much detail about my experience if I’d spotted you were on it longterm. I really didn’t mean to worry you.

Thank you for sharing these experiences with me. And for offering another perspective/option. So much to consider really.

I was similar to you, on a constant period, passing huge clots...some days, I just had to literally stay in the bath!

An internal scan showed some small polyps but no real reason for all the bleeding.

I (reluctantly) opted for the mirena coil, fitted at the same time as a D&C & it's been life changing! I bled for a few months after but progressively less & have had no bleeding since at all!

Worth a try!

That's interesting! So did they get rid of polyps then insert one? Or insert whilst polyps still present? Sorry if I'm being dim.

No worries TammySwanson and I'm sorry you had such a bad experience. My situation is different because I was in my mid-40s when I started it and not wanting to get pregnant, so essentially it was just an early menopause for me. I am under an endo specialist privately in the U.K. - he did my third laparoscopy, which was pretty extensive. Although the surgery improved my symptoms a fair bit, I was still in a lot of pain, partly because he thinks I have some microscopic endo that he couldn't get to and partly because I have scar tissue behind my cervix due to a massive build up of endo there... because I waited a shitty long time for a diagnosis. The only other solution for me is a hysterectomy but at that point I'd had 8 surgeries in 8 years (not all for endo) and I really couldn't face another big op with no guarantees. Anyway, I had good results on the Synarel in the initial 6 months and given my circumstances he was prepared to let me try it long term. I agree it is unusual and off-label but I think it's merited in some situations. It's improved my life greatly - no horrendous bleeding and I've massively reduced my intake of opiates and pregabalin which I'm sure is good for my health in the long term.

I'm abroad now but still travel back to the U.K. to see him, though my gynae here is also happy with the long-term GnRH treatment given my age. She has said she has fibroid patients on it too.

The cynical part of me says one reason it's not licenced long-term on the NHS is because of the cost 🙄

Sorry for the derail OP and glad the info has been useful overall!

I would see if I could stay on the Norethisterone & get on the waiting list for a hysterectomy. Even if you have the Mirena coil you could have to put up with more bleeding until it settles down & there is the chance it won't work. The endometrial ablation carries the chance that the lining can thicken again. If you can get a keyhole hysterectomy you are in & out in under 24 hours normally, you don't have the pain from a large scar & will be feeling much better within a couple of weeks. If you don't want to go private, ask to use NHS choose & book, you can choose a private hospital that does workfor the NHS, you get exactly the same treatment as a private patient, but usually get done quicker & at a time of your choosing.

That's really interesting too! Does that exist all across the NHS? I'm in Wales.

Do you have to make any payment towards that choose treatment?

I use cirelle to stop my periods. They were very similar to yours. The hormone in the pill is the same as in the coil, so I'm told, why not try this first to see if it works.

No fibroids but periods like a monthly massacre and getting worse, heavier, longer and more painful each month. I got a mirena, now a little dribble, almost pain free, much better good luck!

It's the fibroids with the Mirena that's worrying me lost about that option now as it seems like a sticking plaster rather than a solution. Though that said, sometimes a sticking plaster is necessary in the interim I suppose!

I didn’t mean to worry you - but they need to be honest with women that it’s a higher chance it won’t work/fall out
You just need reassurance that the position of your fibroids won’t interfere too much but you don’t know how much or fast they will grow either
I know many women who had ablation with no issues at all and it works for them. Even though there is also a chance ablation isn’t long term as tissue regrows
Personally? I would push for the womb to be cleared out before getting a Mirena but that is just me!

Sorry OP, I may have missed how old you are but if a Mirena works and suits you it will be a much better than surgery. Even if it doesn't work well ( fibroids and polyps) it might mean that you can avoid heavy duty hormones or transfusion. If your consultant, who has seen your scan, thinks it is a good idea and likely to be physically possible, go ahead and give it a try.the reason I mention your age is that if you are eg over 45 then one mirena might see you out whereas if you are only 30 this question is going to come up numerous times in your reproductive life. What does your GP think?

^ excellent point re age
I am in my 30’s and not willing to tolerate this for another 15 years or so
But if I was older I may just keep trying Mirena and hormones etc as not long to go until menopause

I am on my 3rd Mirena. They stop my periods completely. Never had a problem with them. I had a break between Mirena 1 and 2 to have a baby. Was reminded how shit periods are!

I work in a Gynae clinic and 9 months to wait for an appointment is quite frankly, bloody riduculous.
You need a thorough gynae assessment. You need a biopsy and the polyp removing, you need a hysteroscopy to assess the endometrial cavity. No point in having a Mirena IUS fitted if there's a bloomin ' great big fibroid protruding into the cavity! Get yourself back to the GP, chase the referral, contact the relevant department at the hospital.

I had heavy periods from14/16 was till I went on the pill then they were light for 15 years with breaks on the pill .
Since having 3 kids in 2.5 years I now have the Mirena. I have not had a period for 3.5 years 😊

I had similar diagnosis to you. I stayed within the NHS and had a failed hysteroscopy, then a failed ablation (womb shape made it not possible), then a hysterectomy. I had a Mirena coil in when my heavy periods started, clots were so bad that it was expelled and I didn’t want another. My GP was a bit slow with the referral but and the whole process from 1st appointment with GP to hysterectomy took 12 months.

In your circumstance I’d probably try the coil first and follow up with the NHS gynaecologist. If the bleeding can’t be brought into a more manageable state then I’d look at going private.