Menopause Matters Forum
General Discussion => New Members => Topic started by: TillyD on June 20, 2013, 08:46:52 AM
-
It's a horrible long story. I'll try to keep it short. I'm only just 44, this all started 3 or 4 years ago but was never fully menopausal, just heading that way. Spent years trying to get GPs to help, who treated me like a worm. Eventually I self referred and forked out £1500 to someone in London. Now on HRT but (short story) have just been given Mirena when I didn't want it, hadn't explored all the options, wasn't listened to, again.
I think I still have a bit of my own cycle going on in the background and what I want to know is, how long will I bleed with this stupid mirena thing? If I have understood correctly, I may stop altogether, but I may not. But then is it going to be completely random? Am I going to have to live my entire life with pantyliners because I might bleed at any moment? If you have a mirena for contraception when you are younger, your periods usually get much lighter but because you have a regular cycle at least you know when you might have one. I won't have a clue because I've been on HRT for a year.
Can someone please help.
I don't understand why doctors don't give you information. Why do they keep it all to themselves, like it's so precious? No one else is living my life - I am and I have to deal with the consequences of decisions that doctors seem to have made for me.
-
:welcomemm: we have a 'search' button so if you put in 'mirena coil' threads will come up so you can see how others here deal with it. I am sure others will be along soon!
My peri-menopause began when I was around 43. I finally had my last period about 11 years ago and for 5 of those I carried sanitary protection with me if we went away over-night ::) - just in case.
You are no longer alone!
-
Thanks. I've searched but nothing quite answers my question that I have found.
Your comment about taking stuff with you overnight wasn't quite what I was meaning. I meant constant wearing because you don't know whenever you might be spotting or bleeding.
-
AAhhh ..... even more awkward. I think the 'always' range of pantyliners etc. is 'good'?
-
Hi TillyD,
I have had 3 - 4 mirena coils filled. The first one when I was 42 for heavy periods & contraception. I had no signs of the menopause back then. My periods had always been regular & having the mirena coil fitted did not stop them, but it made them a lot more lighter. I still needed the regular/light tampon & panty liners.
As I got older & the signs of menopause began (aged about 50), I realised that I needed HRT to enable me to continue with my full time, (& sometimes demanding) job. I then found out that I only needed to take estrogen tablets because the coil was providing me with the progesterone hormone.
I would say that your periods are more than likely to continue at the normal cycle for about 6 months, but may then stop altogether as mine did. For years I carried 2 pantyliners around in my handbag (just in case), but I never wore them "just in case". I do not feel that would be necessary.
I hope this has helped in some way... The Mirena is not a magic wand & it doesn't always suit everyone but it worked very well for me for 15 years or so, & I think that if you give it a chance you might see some benefit.
Good luck & let us know how you get on.
Cazi .
-
Hi TillyD - I'm not sure why you have been given a Mirena. Is it for heavy periods? Are you taking oestrogen as well? It all depends on your underlying cycle and how much extra oestrogen you are having too.
Having the Mirena is a bit like using continuous combined HRT when you are peri - it doesn't work with some women because their own cycle breaks through and they bleed randomly so they are put back on to cyclical HRT when the bleed is theoretically more predictable because of the higher dose of progesterone for only part of the month. However I think Mirena gives quite a high dose of progestogen.
I understand bleeding should settle by 6 months - here is what is says under the summary of product characteristics on the web:
http://www.medicines.org.uk/emc/medicine/1829/spc
Irregular bleeding: Mirena usually achieves a significant reduction in menstrual blood loss in 3 to 6 months of treatment. Increased menstrual flow or unexpected bleeding may be indicative of expulsion. If menorrhagia persists then the woman should be re-examined. An assessment of the uterine cavity should be performed using ultrasound scan. An endometrial biopsy should also be considered.
Risk in pre-menopausal women
Because irregular bleeding/spotting may occur during the first months of therapy in pre-menopausal women, it is recommended to exclude endometrial pathology before insertion of Mirena.
I hope that helps and you can work out what's for the best - and of course that your bleeding settles.
Hurdity x
-
Thank you for your replies Hurdity and Cazi
I am on 2 measures of Oestrogel daily and have been given the Mirena due to heavy periods. I was taking tablet progesterone but bleeding was getting slowly worse and my breasts were VERY painful for up to 3 weeks a month.
A scan showed a possible polyp and thickened endometrium so I had a biopsy and removal of the polyp and at the same time had a Mirena forced on me. What I actually wanted was to have the polyp removed to try to stop the heavy bleeding and then go back to trying Utrogestan and less Oestrogen. But I was given no choice because a doctor decided that she knew best, when actually she knows nothing of how the consequences affect MY life, not hers.
Its been in 6 days now and I start a new job tomorrow with spots and greasy hair. I have cramps and light bleeding/spotting
Because I was still have a regular-ish cycle a year ago when I started the HRT, I now do not know what has happened to my natural cycle. I therefore will have no idea when I may or may not have a period. I'm sure I will have lighter bleeding but it doesn't help that I literally won't know from one hour to the next when I may start to bleed again. Or not. This sort of not knowing doesn't fit well with the job I do. And if I have a thickened endometrium, all that lining as to come away at some point over the next 6 months. I could be bleeding for months.
Bloody stupid doctors just don't think. They don't have to deal with the consequences that I do. They can just go back to their offices and carry on not caring. I am SO upset. :'( I am stuck with this thing inside me that I cant get rid of until someone else decides that they agree with me. Its unbelievable!
-
You can insist on having it taken out. Go a discuss it with your GP. There is no reason why your practice nurse or GP can't remove it.
It's your body and your right to have it removed. It might take a bit of feet stamping and complaining but you will be able to have it removed.
Don't give up. If you are determined it's not for you then go complain and have it removed.
Good luck with the new job.
Honeyb
X
-
Sorry to hear about this TillyD.
I can see that they have given you the Mirena to try to reduce the endometrium.
However some gynaes (maybe GPs?) give norethisterone (tablets) which is a very powerful progestogen which trials have shown is effective in reducing thickened endometrium. Downside is that some women don't get on with this (when part of HRT) as can cause irritability, headaches and pms symptoms.
It would still be a bit like conti HRT though - because the progestogen is given continuously, so you may still have some bleeding initially as your cycle breaks through and as the lining comes away.
It is important to reduce your lining because endometrial hyperplasia ( thickened lining) can sometimes contain what is known as "atypia" ie the cells are behaving abnormally, and sometime this can lead to endometrial cancer - ie womb cancer - so you really want to ensure your lining is reduced.
There may be other alternatives ie physical means rather than hormonal ( ie progestogen) - I don't know much about these - ??D&C, endometrial ablation?? which you could maybe discuss but perhaps they are triyng to minimise these.
Thing is as you are continuing to take oestrogen ( for your menopausal aymptoms) the lining will continue to thicken without adequate progestogen and if it's already thickened something needs to be done.
Once it has thinned to normal range presumably you can go back on cyclical HRT and you will know when your periods are?
As honeybun says though - it;s your body and you want to be able to discuss the alternatives - preferably with a specialist who will have the time and knowledge to discuss all the options and letting you choose given your circumstances.
Hurdity x
-
You need to go back to the Dr who inserted the Mirena and ask more questions. If necessary print off some of the ideas here but not with the associated names. It is your body. Sometimes Doctors think they have explained all that the patient needs to know and sometimes it goes over our heads ::) .......... but feeling that a treatment has been forced onto us is not a way to build up a working relationship with the medical profession >:(
She needs a :kick: >:( .......... putting something inside without explaining the reasons nor the possible consequences ........
Or go to your Practice Nurse for advice. :tulips:
-
It's not good news.
I do have a thickened endometrium and I was already on norethisterone. Originally 2.5mg 7 days per month and last month up to 5mg for 14 days per month. It killed me though, emotionally.
I have been on 2 measures of oestrogel daily.
I believe I have been given too much oestrogen. Sure my hot flushes, lack of sleep, lack of energy, lack of concentration etc have gone. But in the past year my breasts have doubled in size, I have developed a linea nigra (dark line of pregnancy from the pubic bone upwards) and I have a thick endometrium developed.
I would have though that I was out of balance and chucking more and more progesterone at me is just papering over the problem.
The cons said that I was at the end of the line and had no more options other than a mirena (or hysterectomy). Her choice for long term HRT is always the mirena because the progestrone dose is localised rather than systemic and is low She certainly didn't offer less oestrogen. I don't understand why I couldn't have just tried it though. And now I have no choice because this thing is in me.
And also there is no way for this lining to thin out other than to bleed away from me. Which surely could take months at this rate - it's only light bleeding and spotting at the moment. I have my first overseas holiday in 3 years planned for August, which is going to be a disaster if I'm still like this. I'm feeling like crap and if my husband doesn't get sex for months he's going to start looking elsewhere, probably someone with shiny hair, clear skin and small breasts like I used to have.
Sorry if I'm ranting and I thank you very much for being supportive. I'm angry and upset and scared and don't seem to have any control over what is happening to me
-
:hug: telling your husband your concerns is important. He is probably at sea with this as much as you are.
How about giving the Mirena a chance? It wasn't your choice and you feel it's been forced on you but perhaps the preparation might help?
-
Preparation? Did you mean the progesterone?
I'm sorry, I am just having a rant at anyone who will listen. And there is no one else who will listen. I wish there was someone but there isn't so I'm just just having a go and expressing what I'm feeling because I'm angry and upset and have no outlet for it. My husband says I'm being stupid
-
If you are so unhappy with the mirena then I would suggest having it removed Tilly. It seems to be making you very upset and angry that you have "this thing" in you and wont help your mood at all. Some women do well on it and others, such as two women at my place work, just couldn't get on with it and had it taken out a couple of months after having it inserted. Have you had a biopsy taken of the endometrium?
What menopausal symptoms did you have four years ago which led to HRT being prescribed?
Taz x
-
I'm really sorry to sound off. I wasn't given enough explanation. I have to understand everything. I am very sensitive about what happens to me and I don't think there's anything wrong with that either.
-
Taz I had hot flushes, no sleep, no energy, no concentration, no short term memory, vaginal dryness, bladder the size of a pea, low mood, hair loss and a cycle that was sort of regular but not quite. And some horrific heavy bleeding at times but not all the time. At the age of 41.
It was actually 3 years ago I think when this whole thing started. I've only had HRT for just over a year. The GPs wouldn't prescribe it. I fought and fought and eventually was prescribed a tablet form which I managed for 10 days before it made me sick and the GP wouldn't prescribe anything else.
-
I forgot to say, yes I did have a biopsy. I don't know the results of that yet
-
Hi TillyD.... why dont you have a chat with Dr. Heather Currie ? Have a look at the home page for info. I have been in your situation regarding Doctors, but not about the meno, but about another health issues regarding my children. I cannot put into words how angry I was at the time for not being listened to properly, and now a couple of years my concerns were right. But its something that doesnt leave you ... that feeling of no control over what is SO important ......to get a quality of life. Maybe if you could email Dr Currie and explain thouroughly what you are going through.... Good Luck. X
-
Oh thanks Rosie.
Does she run this page? Does she respond to emails? Surely she must be over run with them?
-
Tilly
If you have a look at the home page you will see the details. You can email her and I think it costs fifteen pounds.
She is the founder of the website and an expert in her field.
Hope this helps.
Honeyb
X
-
Thank you. That might be a good idea. If I could just get some Questions answered. I feel like the doctor I have seen has kept all the knowledge to herself and not shared it with me. Perhaps there are some good reasons for everything but I haven't been told what they are.
-
Hi there just to say the £15 e-mail facility isn't there any more - I expect she's overrun with them. I had such a helpful response which meant I took it to the doc, got a referral and didn't have to stop HRT!
However the telephone facility is there but just means you can't print it off. You phone the number and then you get a message on your mobile saying when she is free. If you miss it you have to try again.
Sometimes it shows on the website when she is available - last time I saw it there it was early on a Tues morning at around 7.30 or 8 am - but it's probably different every day/week depending on her schedule
Hurdity x
-
You rant Girl! That's what this Forum is for, to share feelings and experiences. yes I did mean progesterone ......... some ladies do well, others find it aggravates their feelings.
I get annoyed if I am not listened to. But Drs have other patients/issues that we don't know about, if I am un-certain I go back a few days later and say "I wasn't quite listening last time, could you explain this/that again ....... " it opens up ways of communication without confrontation. When I am angry I don't go back 'cos I would blast out what I am feeling ::)