I posted earlier about whether having the mirena removed is painful and whether I can have a smear test done at the same time as I have put off my next test for many years.
Now I have another issue - I want the mirena out urgently, as soon as I can get an appointment. However, last night I started bleeding - its not heavy but I'm passing large clots.
The guidelines say you shouldn't have a smear on your period but this isn't technically a period - I'm guessing the issue is getting a sample that's clear of blood rather than where you are in your cycle though.
Aside from the unpleasantness of having these things done when you're bleeding, can you have a successful smear done when you're bleeding? If not, how do you schedule a test if you have something like a mirena that means you bleed most of the time and unpredictably? It's making me think I should put it off until the bleeding stops as I don't want to have to go through it all again for a smear test, but I just want the coil out now!
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cupcakegirl
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They say that blood does interfere with smear results so they may wait until the bleed stops until they carry out the test. Do you have some clue to where you are in your menstrual cycle? I'm aware the test should be done roughly two weeks after you menstruate.
Just read this and am disheartened I bleed constantly and am having the mirena fitted in a week or so to try to stop this. Does the mirena not help the bleeding ?
It's different for everybody, but I had my Mirena put in specifically to cope with my bleeding and it's been a Godsend. I had the second one put in in October after the first one ran its course.
I used to bleed really heavily pretty much constantly but now it's down to a couple of pink spots.
Don't be disheartened. You tend to hear more Mirena horror stories than success stories because people don't report success as often as they report problems
As with all treatments for endo, it varies dramatically from person to person. However, your doctor should have told you that it's highly likely that you will have irregular and possibly constant bleeding within the first few months while it "settles in" - gynaes tend to say that it settles within 6 months but that's not always the case. The mirena reduces bleeding by making the womb lining thinner but it varies how effective this is - so in some women it will stop bleeding completely, some will get light bleeding and others will have much heavier bleeding. Most women do not stop ovulating so you should still have a cycle which can include regular periods, and ovulation pain won't be improved. There are various other side effects - you should have a look online for the patient information leaflet. In my case, I've had quite major depression, extreme mood swings and anger, increase in appetite and weight gain, insomnia and disturbed sleep as well as the pain and bleeding, but then some other people don't get these side effects, or may get different side effects. My doctor told me that the mirena has very few side effects because the dose is so low but the side effects have been as bad as depo provera, but with the addition of the pain and more bleeding. The side effects for me have been far more severe than anything I've had on the pill.
If you do a search of this board, you'll find lots of messages about the mirena - from what I've seen, endo sufferers have more problems with it than non endo sufferers. I had severe contractions every day for the first few months and lots of bleeding. Most of it was lighter than a usual period (but then I have really heavy periods). It has settled down since - I'm at almost 7 months now - but I'm still having pain and bleeding so I'm getting it removed. There are some women who find it helps a lot - I spoke to one woman who hadn't bled at all since it went in - she wasn't an endo sufferer, but it's hard to say for sure whether endo sufferers bleed more than others on it since its not been studied that way.
If you're going to have it put in, I would get the doctors agreement that they will remove it after a month or two if its causing you problems - my gp wouldn't take it out without the gynaes approval and my appointments kept getting cancelled or moved. It's been a nightmare - you might be lucky though
All I would say is, do they know why you're bleeding constantly? Are you on any hormone treatments? If there's no obvious cause for you bleeding constantly they need to investigate it as the mirena shouldn't be used for undiagnosed abnormal bleeding. Have you tried tricycling the pill so you only have a break every 3 months? That might be a good way to control the bleeding without the potential side effects of the mirena.
Remember, this is just my experience and others won't have the same problems - but if you do a search of messages here you'll find that quite a lot of ladies are struggling with similar issues.
Thanks for your reply. Yep I've tried the tricyclic pill and it worked for the first month only. I've bled constantly for almost 3 months now. Mefenamic acid made it lighter but also gave me the runs so I've stopped that and am just taking co codamol for the pain and the moment. I just assumed the constant bleeding and pain was my endo and adenomyosis.The registrar didn't seem concerned by it. She did to a biopsy last week mind, hopefully that will tell us more. Feeling very low today drained physically and emotionally.
It's a shame the pill didn't work for you as its such a good way to control bleeding - have they tried you on a higher dose pill? I found that I would have breakthrough bleeding on a couple of lower dose pills but when I tried a pill with a higher dose it completely stopped. It can take a few goes to find a pill that works for you.
Bleeding all the time when you're not taking any hormones is quite unusual as far as I'm aware - it could be that your periods are so long that that never stop but that would be pretty unusual. When you say you're bleeding all the time, are you having heavier periods and then spotting in between, or is it quite consistent. If you're spotting in between, it could be something like a cervical erosion (not as scary as it sounds!) causing the lighter bleeding - if you're essentially having a constant period, that might suggest some kind of issue with your hormones, perhaps low oestrogen levels causing oestrogen withdrawal bleeding? Or maybe some kind of infection - have they done swabs recently? Obviously I'm not a doctor and just going on my own experiences and what I've read.
It's good that you've had a biopsy to check for anything more serious - I'm guessing a cervical biopsy? I had one years ago with no anaesthetic and it was awful so I hope you're recovering okay. If that's clear, maybe ask your doctor for a blood test to check your hormone levels are okay - I think this has to be done at a particular point in your cycle and possibly repeated so they can compare levels, I'm sure someone here could give you more info on this as I'm trying to get this sorted out for myself at the moment.
Whatever happens, I hope the biopsy is clear and that they find something to get your bleeding under control. Constant bleeding is horrendous - make sure you're not anaemic too as this will make you feel worse.
I meant to add that I'm really sorry you're feeling so low at the moment - I'm really struggling with my chronic fatigue at the moment and it's awful. The bleeding is now doubt a big factor in this - maybe take some iron supplements if you're not already doing so?
Take care and try to keep your chin up - this disease is a rollercoaster and I'm sure you'll be on the up soon.
Gosh I've had more info from you there than all the doctors I've seen in years !! Thank you ! My bleeding is heavy and constant. Clots etc etc. I had bloods done last wk and the cervical biopsy (like you with no anaesthetis- that was character building !) I was on Yasmin but the GP changed it to Marvelon. That's made absolutely no difference at all. One GP kept trying to get me to go back on Celest which was very frustrating as the mini pill has never helped. Can you suggest a pill with a higher dose (what is it that I need a higher dose of ?) I am desperate to try absolutely anything. Years ago I was on Femodene. I got on great with that but they withdrew it as it was one of the ones to do with the whole 'pill scare' yrs ago. I have just had my hospital letter and I'm not booked in til 19th March. Am in floods of tears now as I thought it'd be next wk. I'm going round in circles and feel like having a good scream ! x
I've just done a bit of research for you into pills - each combined pill contains oestrogen and progesterone in different doses, and slightly different variations of the hormones. According to the NHS website, Femodene is still available and comes with either 20mg or 30mg of an oestrogen called ethinylestradiol and 75mg of a progesterone called gestodene.
If that worked for you and assuming its not available any more, it seems like Loestrin would be an excellent substitute for two reasons:
1) The type of oestrogen is the same type as femodene, and you can get Loestrin in 20mg and 30mg versions too, just like the femodene.
2) Loestrin uses a different progesterone called norethisterone - this is often prescribed on its own purely to stop bleeding so should be well suited to helping you with the bleeding.
That's all good in theory of course, although theres no way to know until you try it. If that doesn't work, you could try microgynon which is the most popular pill in the UK because it's effective in controlling symptoms without too many side effects. I've also heard that Binovum is used in people with problematic bleeding because the hormone dose varies throughout the month. So there are a few options you could try.
If the bleeding is like a continuous period it suggests that your endometrium is very thick and storing a lot of blood - I believe the thickness of it is controlled by your FSH (follicle stimulating hormone) so its possible that this is somehow imbalanced and causing your womb lining to thicken too much. Have they ever noticed on an ultrasound that your womb lining is quite thick? It may not show though if your bleeding all the time.
If you think about it logically, your hormones work to thicken your womb lining and release an egg, then shed the lining if the egg isn't fertilised (in over simplified terms). This usually happens only once a month, and the lining sheds until its back to normal and the process starts again. If you're having a continuous period, that implies to me that there's a problem somewhere with your hormones either making the lining too thick, or not stopping the bleeding. Again, I'm not a doctor but it seems like a logical conclusion.
If I were you, I'd go back to your gp and ask for either Loestrin 20 or 30 depending on what dose of femodene worked for you. You could either ask for a series of hormone tests to be done and wait to start the pill until after this, or ask for a referral to an endocrinologist to investigate your hormone levels and take the pill while you wait. I'd also ask for some iron supplements. When you see your gynae, make sure they understand fully that the bleeding is consistent all the time and ask why they think you're bleeding all the time - they might have an answer that has eluded me that seems logical, but ask lots of questions.
If you've had children and don't want any more or definitely don't want them, you could look into endometrial ablation which can be very effective in reducing bleeding.
I hope this helps - let me know how you're getting on and make sure you're resting.
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