Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: purpleflower78 on December 15, 2019, 11:21:19 AM
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Hi there I've posted on here before and am getting nowhere with the professionals so thought I would seek advice please?
I am 53 and have been bleeding now continuously for 4 months now.
I have had an ultra sound at beginning of October and the total endometrial thickness was approximately 24 mm. I was then referred to gynae clinic at local hospital for a biopsy. The wait at that time was over 10 weeks so I decided to pay for a private consultation. The consultant did a biopsy (all clear thankfully) and recommend various treatments (ablation etc) at a cost of £3,600+ with a back up of the Mirena.
Having thought about it I decided that the cost involved was too high and as the chances of the Mirena working were roughly the same as the treatment I decided to ask my GP for a Mirena.
At that stage I was still waiting for the biopsy results but the GP I saw was happy for me to try a Mirena to see it that helped. When I got the biopsy results I went back to the surgery (different GP but one who I had been seeing previously). She was not happy to fit a Mirena without first getting approval from the consultant I had seen privately because of a point raised in her letter that the biopsy had been tricky to do. She felt that this could mean that the Mirena would be difficult for her to fit in the surgery; if this was the case, I would then to be referred back to gynae dept.
And now I wait, I have been told the consultant has been emailed but no response as yet. I feel I have possibly annoyed everyone, the GP because I decided to go down the private route for a biopsy and am now returning to the NHS and the consultant because I am not proceeding with private treatment. The £325 I paid for the consultation and biopsy was as small price to pay for peace of mind (I have dreadful anxiety which is being made worse by peri) as I had been told by both GP and consultant that whilst unlikely it could be something sinister. If I had waited for the NHS I would still not yet have had the biopsy. I am not rich and the cost of private treatment which had a success rate of completely stopping periods of 50% would have taken a lot of our savings, hence the decision to try the Mirena.
The GP tells me that continuous bleeding is very common in peri and that it could stop at any time, but I have yet to find anyone else who has been in the same situation!
I am wondering does anyone know if the mini pill might help?? This has not been suggested and that might be because of my age although it looks like it can be taken until the age of 55. I don't mind if my periods become irregular I just need a break from this continuous bleeding.
Any advice or insight would be gratefully received please.
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Hi irregular bleeding and heavy bleeding can happen in peri menopause. Bleeding can get worse or can be the opposite.
Have you thought about trying Oestrogel and utrogestan?
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Hi, I've had private and NHS consultations previously.
The private secretaries are usually very efficient and friendly. Could you contact them direct and ask for the report (you have paid for that along with the actual consultation after all). If you don't have the private secretary details just phone the private clinic and they will provide you with them. I used to email the private secretary with additional questions a couple of times after my consultation and they were always happy to provide an emailed response from the consultant.
Do not worry about getting on anybody's nerves. You are just taking responsibility for your own health. You've used your own initiative to go private at your own expense and saved an NHS place for somebody else. X
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I don't know the answer, but I was reading and felt I should post. Hugs.
I would certainly try the mini pill. It will be quick, free and easy to try immediately if they agree. You can also buy the pill or mini pill online at superdrug or Lloyd's. I have used cerazette before and it totally stops my periods. I don't have bleeding problems though.
I have a friend who was fitted with the mirena for constant bleeding. She is still bleeding, so they suggest mini pill on top. We are all different though.
I totally understand the feeling of annoying the GPS and consultants. My issues are dizziness, nausea and brain fog etc. I have been seen by many consultants over the last 2 years and I have paid twice, as frankly, sometimes the wait is just too torturous!!! I think they get it!!! Please don't worry about it. X
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Hi purpleflower
Sorry to hear about your continuous bleeding. has the doctor not given you any treatment either to stop it or clear the lining?
Thing is - the way I look at it is - you presumably originally went to doc because of continuous bleeding back in Oct and at the time you had already been bleeding for some time? Well if your lining was 24 mm then and you still haven't ovulated then the bleeding is presumably oestrogen breakthrough bleeding ie spontaneous shedding of a thickened endometrium ( womb lining)? As the biopsy is thankfull all clear you are still left with the problem of the thick lining well I presume you don't know how thick it is now?
If you look at the information on this site and generally, tranexamic acid can be given to stop the bleeding and also a course of norethisterone to both stop the bleeding and/or thin the lining or both. If you took a strong dose for however long recommended and then stopped, the remaining lining would come away and then be normal thickness (which could be checked by another scan?). At that point you could have a Mirena fitted or start the mini pill.
The problem with starting both before thinning the lining, if it is still thickened and depending how much, is that you're likely to get sporadic bleeding until your womb lining settles into the no-bleed (or minimal bleed) position. If you are still peri then even despite this you may still get periods but they would be lighter.
Have I explained this OK or does it sound confusing?
There us info on this site about bleeding and treatements:
https://www.menopausematters.co.uk/heavyperiods.php
https://www.menopausematters.co.uk/periodtreatments.php
I quite understand your not wanting to pay out even more especially now you have peace of mind re biopsy - you should not have to. Ablation is available - if recommended - on NHS.
Hope this helps - and let us know what you decide and how it goes
Hurdity x
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Hello
I really feel for you. I was driven insane by the constant flood of blood last year for weeks and weeks and weeks on end, with huge clots every hour, pretty much 24 hours a day, as well. I would have to get up a few times during the night and scrub the floor between my bed and the bathroom (8 steps from my bed to the toilet). It made me anaemic and I ended up in out of hours.
Anyway, here is what I've discovered.
I tried a couple of different mini pills for a while. They had pretty much no effect whatsoever on the bleeding.
I had tranexamic acid (which doesn't actually stop the bleeding, but deals with the clots and sheer heaviness of it). I couldn't take it because the side effects were so bad for me.
I then had Norethisterone, which will stop the bleeding for the time you are taking it. Although the bleeding might start up again after you stop taking it (mine did, and in the previous nightmare fashion).
But...the Norethisterone made me feel like myself again for the first time in goodness knows how long. So I started looking into why.
Which led me to ask my GP for a combined pill. There was no reason why she shouldn't have given it to me but she pretty much didn't want to give it to me. I have PTSD and was at my wits end after being triggered for months on end by this point. I had a panic attack in her office after she refused. She ended up writing me a prescription for it just to get me out of there as quickly as she could.
What she gave me (Loestrin 20) almost worked. But I discovered it wasn't strong enough, it didn't have enough (guess what?) Norethisterone in it. So I went to a contraception specialist and she gave me the same pill but in a higher dose of Norethisterne (Loestrin 30).
And it's been working like a dream since then. I had one horrible 'period' of heaviness and clots a couple of months ago, but it's been pretty good since then.
The contraception specialist gave me an ultrasound (from outside only...PTSD) and said I maybe had a couple of small fibroids, which may have been making the bleeding worse. But I'm not having any other sort of ultrasound, so I'm OK with that.
Hope this helps.
I felt really frightened and very depressed and like I was going out of my mind at the time.
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I feel your pain - I'm in a similar position - went to July I missed a period and thought oh hear we go I'm starting the menopause - I'm 52 - the next month I bled for two days - the following month had a normal heavy period then on 20 Oct I started again and bled for two days then three days later I started again and didn't stop!
After two weeks I went to doctors and they gave me Provera 3 tablets a day and said take them for a month and come back and we will put you on HRT - bleeding continued heavily so i rang doctors again - spoke to a lady doctor who said she would prefer to get a scan just to check everything was ok - waited for 8 days and had a scan - lining 22 cm thick but she suggested scanning again in six weeks
That weekend I ended up in a and e as I was bleeding badly - large clots and felt dreadful - saw gynae registrar who said the scan had showed three fibroids and a polyp and because of the bleeding she would fast track to have a hysterescopy appointment
Got that done on the 28th November and am still waiting for results for biopsies - whilst at that appointment the consultant said he strongly suggested I have mireno coil fitted and he did it there and then
The procedure was quick and easy and not massively uncomfortable but since I have had the coil fitted I have had slight spotting every day but I think he said this was completely normal and it could take four months to settle down
The bleeding is not anywhere near what it was and I'm wearing a panty liner most days but I don't know where I am in my cycle and some days I think maybe it's slightly more and he suggested coming off the Provera slowly so I am only taking one tablet a day at the moment until next week when I will have come off them altogether
Waiting for the results is really hard - the consultant said it would be four weeks and I said - oh that's would be Christmas and he said - oh six weeks then!!!
In myself I feel ok - the coil was odd at first and the strings felt prickly but they did say they soften eventually and it's no where near as odd as it was
I am terrified to ring for the results as I don't want to bother them and I think I'm terrified of maybe finding out if something is not right
I too have been so anxious - My OH is fantastic and I feel much better when he is around - I've never been an anxious person so to feel so vulnerable is hard
When I wake up in the morning I feel really sweaty and hot at night sometimes but I'm guessing that is just part of it all
Any advice from you lovely ladies would be appreciated - is this continual spotting normal with the coil?
Thank you
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I've started bleeding again today but I'm not sure if that's because I am reducing the Provera?? Or if it's a period -
It's all a bit confusing as you don't know where you are in your cycle
I'd be grateful for any thoughts ?
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A lot of my friends have gone back on the pill because of bleeding they don't take a break and just go right through without a bleed they also say all there menopause symptoms have subsided since taking it.And that would make sense since it's double the strength of HRT.Go with your gut feeling you know what is right for you and push until you are satisfied.💖💖
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I've started bleeding again today but I'm not sure if that's because I am reducing the Provera?? Or if it's a period -
It's all a bit confusing as you don't know where you are in your cycle
I'd be grateful for any thoughts ?
Sorry to hear about the ongoing bleeding. Yes it is tricky to know what your natural cycle is doing once you start a Mirena or take the mini pill. If your lining was 22 mm then the progestogen from the Mirena as well as the Provera will help to thin it but the body will take a while for the lining to completely thin down to within normal limits - so in the meantime you are very likely to get bleeding - more than if your lining was already thin. Eventually you may settle into a cycle wherby you continue to have regular-ish perids but they would be much lighter as you have the Mirena and eventually they may well stop (before you reach menopause) due to the Mirena.
If I were you I would ring for the results, hopefully to put your mind at rest before Christmas - although if there had been something amiss they would surely have contacted you straight away?
Yes the overheating is most likely the beginnings of menopausal symptoms and once your womb lining has thinned down and the bleeding subsided, if the symptoms worsen and become difficult to live with, then you can always take oestrogen if you wish to, knowing your womb lining is protected with the Mirena.
Glad you have the support of your partner :)
Hurdity x
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Thanks Hurdity - i rang my doctors and they haven't heard anything from the consultant - it's three weeks today since I had the biopsies!
I'm hoping no news is good news as I'm pretty sure if there was anything they would have rung by now or written with a follow up appointment.
The waiting is so so hard - especially at Christmas
Everything you said makes sense regarding the bleeding and I'll bear with it for the time being - he did say that it could take a while for the coil to start to work
He said they would write to me with the results in six weeks!!! But surely they would ring if there was anything untoward before then ! One would hope so anyway
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Progesterone tablets will stop the bleeding. I have been in your exact position. I refused an IUD and elected hysterectomy with multiple repairs. That was 18 months ago and the best decision I ever made.
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The consultant when I saw him for the hysterescopy mentioned “a drop down menuâ€
First was the coil and give it a good few months as it takes time to work
If that doesn't work he mentioned the womb ablation
Hysterectomy was further down the list
I guess they have to work down the list due to cost ?
I really need these biopsy results back though as that could determine the outcome ultimately
The waiting game is horrid - I lost my son four years ago and my daughter is frightened that she is going to lose me I think - I feel like I've lost me the last three weeks
My anxiety is through the roof and I'm trying to keep going the best way I can for the family - putting a brave face on even though inside I'm scared stiff
Thanks ladies for your replies - you really have been amazing taking time to reply Xxxx
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Hi, I don't want to advocate having a hysterectomy willy nilly as it is major surgery. But I'd had heavy bleeds for 8 years, horrific anemia with fibroids and was so sick of getting nowhere and being passed from pillar to post. That is when I went to a private gyno for advice and we agreed a hysterectomy was the best course. It was the best decision for me for sure.
I guess what I'm saying is dont give up hope. You can take control of your own health, there are options, just choose what is right for you and if you don't feel like you are being supported go somewhere else.
Heavy periods ruled and ruined my life but no more thank god!
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Hi, I don't want to advocate having a hysterectomy willy nilly as it is major surgery. But I'd had heavy bleeds for 8 years, horrific anemia with fibroids and was so sick of getting nowhere and being passed from pillar to post. That is when I went to a private gyno for advice and we agreed a hysterectomy was the best course. It was the best decision for me for sure.
I guess what I'm saying is dont give up hope. You can take control of your own health, there are options, just choose what is right for you and if you don't feel like you are being supported go somewhere else.
Heavy periods ruled and ruined my life but no more thank god!
Agreed. I elected hysterectomy, but only because I had multiple prolapses and wanted them repaired at the same time. In January 2018, I started a period that just refused to stop. I was given progesterone tablets and told that this would stop the bleeding, but I still needed a transvaginal ultrasound. That showed a 16mm lining which turned out to be nothing sinister, but because of my prolapses, I refused the IUD. That would have meant being on progesterone tablets until menopause (whenever that would be). So I chose hysterectomy and repairs whilst keeping my ovaries. 18 months later and I feel like a completely different person. Sex is normal now, bladder and bowel function as they should. It was a great decision in the long run, but it is certainly not for everyone and some women have bad outcomes.
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Quick update
Finally after six weeks I got my results back from my hysterescopy - all biopsies clear!! To say I'm relieved is an understatement.
Have six week coil check up with practice nurse tomorrow and I'm still bleeding - mostly spotting but every now and then I'll have a proper bleed.
So all in all I've been spotting and bleeding every day since the coil was inserted on 28th November and started this wretched bleeding on 20 October !!!!
So ..... any advise what I should be asking the practice nurse for tomorrow?
Another appointment with the doctor am taking transamic acid every day and that's not working !
I know that the coil can take a while to settle and work I was advised four months!!!
Am due to go on holiday to Barbados in April and would really like to not be worrying about bleeding then plus my poor OH thinks I've shut up shop and we don't have a relationship really at the moment at all! It's like living with a brother but we get on!!!
Any advise would be really lovely and I value your input as always