Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Eddie on September 02, 2013, 01:46:44 PM
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Hello ladies, long time again.....
I have been having quite a rough time of it so i've decided to have a break from my hrt. Tomorrow will be my last day so i really dont know what i've let myself in for. Currently on Femoston 2/10.
My reasons initially for taking hrt were, my nerves were shot, much better now.
Had started getting flushes during the day, and lots of joint pain, the joint pain has never been helped. So here goes. :-\
Eddie. x
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I have stopped for a week now in the hope I don't need it any more. My anxiety is not helped much and the aches and pains have remained constant. I have been on HRT for four years now so time to see what will happen now.
Why have you decided to stop.
Honeyb
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I decided to stop because this vulvodynia is pretty intense, it runs inline with my cycle. So i want to see if it makes any difference. There are days where the pain is so bad i can't sit down. Also, i would like to see what happens with the rest of the symptoms. Like you my joint pain and morning stiffness is no different on hrt. I am hoping i have my anxiety under control by now.
What is your reason for stopping?
Eddie. x
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The GP wants me off after five years so thought I would see what would happen.
I have also had terrible anxiety and I want to take St John's Wort which I can't on HRT. I did try ADs but they made me feel terrible.
To be honest I think I am probably clutching at straws just trying to ease the anxiety. I have tried HRT in different forms with no joy so time to try something different.
Sorry to hear you are in such pain. How do they treat it so you can get some relief.
Honeyb
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I too think i'm clutching at straws, i have tried anti depressants for migraines, (forgot about that one), beta blockers too? Nerve pain killers for vulvo, and these are serious drugs, so i don't want to take any of them especially if i can link hrt too them.
I take voltarol for joint pain. If at work i am very careful i can avoid getting stiff, but i need to watch my posture. I do a lot of stretching exercises, my hands are rubbish. thank goodness i don't type much, need to keep them warm. My Rheumatologist wanted me to stop the tabs she gave me and the joint pain is a little worse with that, but not too bad considering all the negatives about the tablets.
Once i stop hrt i will only be on Protium, lyrica, voltarol and motillium. So i read your other post about bloating? Possibly my big fat stomach (under my ribs) not belly will feel more comfortable? Could be good.
Eddie. x
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Hi,
Have you tried Nortriptyline for the nerve pain, I have it prescribed for mine as I have MS it works very well, it does t cause tiredness and no side effects I have been on it for nearly three years.
Hope this helps
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That's a thought smokey, I was on amytriptiline?? But couldn't keep awake, so doc at vulval clinic switched to lyrica because I had it years back. But come to think of it he did mention that one. Oh well back on Thursday, might just mention that.
Eddie. X
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Hi eddie
Just wondering, are you coming off gradually or going cold turkey? i'm also on femoston 2/10 and although not thinking of coming off at the moment, i'm interested to know which is the best way to go about it when the time comes.
Hope all goes well for you.
Delilah x
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I have tried both Delilah and they have both been as difficult as each other. It is thought that weaning yourself slowly though is the best way to do it. I cut down from a whole to half a patch and the hot sweats were back within a month. I stopped completely this time and the hot sweats were back within a couple of weeks.
Taz x
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I have just stopped and up to now apart from some night sweats I have not seen any difference in how I feel. I was getting night heat before but no sweats so that's a bit annoying.
I am less bloated and a bit less anxious so that's good. I have also lost about 2lbs in ten days. I am not over weight but the fact I am less bloated could be the reason.
Honeyb
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Onwards and upwards Honeybun.
Day sweats have increased a bit today - every fifteen minutes since lunchtime. Work begins properly tomorrow so that will be interesting!!
Here's to a cool night for everyone!
Taz x
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Oh heck Taz. I hope it starts to settle soon. Or will you head back to the HRT?
It's just so different for everyone.
Honeyb
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The first time I tried to come off it I lasted three months and last time around six weeks. I guess it could take around six months or, then again, I could stay like this forever!! As I said the plan was always that I would be retiring at around the time I would have to stop so life would be a bit easier but now I have to do another five years. It's work which gets to me the most - I just can't make good decisions and keep focused when in the middle of a sweat. Don't know what to do really. The odd thing is that this week I have become bloated again with a craving for chocolate and then savoury things plus slight period pain just as if I was in a real cycle but I can't see that I would have any of my own hormones still kicking around. Hmm.
Taz x
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I never thought about doing it gradually. Doc just said to stop it. I really don't fancy all these sweats, especially in a polyester tunic at work. Will just see what happens.
Eddie. X
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I would have found it difficult to cut down with the type of HRT that I was on. I am still using Vagifem to try and make sure everything remains healthy.
I wish I could fast forward a few months to see how I feel then and if I did not like it then I would just start my HRT again ;D
Crystal ball anyone.
Honeyb
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Good luck to all of you, i hope you can all manage to come off without much distress, that time will come for all of us and stories of success gives us all hope. Keep us posted.
Delilah x
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Looks like the plans have changed again . Saw Gyn today, they finally believe me that steroid creams are making no difference to vulval pain. And that possibly hrt could be responsible! Phew. So, new plan is to chance to femoston conti. Only trying it for a few months to see.
Eddie. X
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Good luck Eddie with your new HRT !
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Funny enuf, ive been suffering with bladder problems and after 6 years on hrt oral, specialust gynae last night told me to come off estro and progest cold turkey and to use vagifem
Am really frightened tho so might have the fist 3 days of vagi with the other stuff to make sure its working and then come off
Good luck and let us know how u get on
Luv tingly xxxx
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Ps have u tried lidocaine cream for your bits n bobs...sort of numbs it for a bit
Xxx
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Hi Tingly. I was looking for something to numb the area, Gyn didn't suggest that and after years of religiously using nothing down there I am a bit dibious about it. I will google the ingredients and see if I can work out if I think it may irritate me. Thanks.
Eddie. X
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Started my new hrt today. So now on femoston conti, does feel strange but worth a go for a few months to see.
How's everyone else doing who stopped or changed?
Eddie . X
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Hi Everyone
I thought I would join in as I'm slowly coming off my HRT to see what happens following a very positive meeting with practice nurse about my options re HRT.
I became peri in my mid 30s so have been on HRT a longgggg time. I took a break when I was 49 as I knew I would be out the other side of meno and hoped flushes etc would settle down quickly. I persevered for 3 years ever hopeful things would improve (suffered every symptom inclu. flushes 3 or 4 times an hour, night sweats, creeping sensations, awful vaginal problems, dreadful headaches, aching joints, exhaustion etc.) but eventually gave in and went back on.
I tried a variety of conti pills but ended up with a Mirena and Oestrogel which has been ok. Now 4 and half years later my Mirena is coming to end of it's life and as I don't want to have withdrawal symptoms in summer (so much worse!!!) thought I would do it now. I'm now 57 by the way so hopefully they will allow me a few more years of HRT if I struggle with this break. I need to keep working for another 9 years so NHS need to support we women though this.
I'm slowly cutting down my dosage of gel over the next few weeks and then I will have the Mirena removed. I am not hopeful that the withdrawal will be ok as I did slow reduction last time and the meno symptoms just slowly emerged and kept on goinggggggg!
I was told it was important to have a slow withdrawal as going cold turkey can have adverse affect on bones - not sure whether this is true - anybody know anything about this?
I'll report my progress and I look forward to hearing how you all are getting on.
Good luck to us all. xxx
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Good luck with it DG I hope you manage this time.
I am struggling and have put on a half patch. The night sweats and not sleeping is making it hard to cope. I just need to sleep to be able to cope with everything that is going on.
I hope you cope better than me.
Let us know how it goes.
Honeyb
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I'm also coming off HRT, my own choice - just thought I would cut down and see what hapens. I'm only on 1mg of oestrogen anyway so am taking one pill every other day. So far I have noticed no difference. I don't get night sweats anyway and still get an occasional hot flush, HRT or not. :o With me, the Sertraline has made a difference and with my GERD under control thanks to Lanzaprozole (and the thyroid meds) I am feeling less anxious (and of course I am having the CBT so doing breathing exercises etc.) Anyway, we will see what happens. The GP has just given me some more HRT so if I need to take it again I can - I'm not due to see her again yet so it will be interesting to see how I get on and I can report back when I do. I have to say that the Sertraline has improved my life no end so I am not keen to stop taking that :-X
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Hi everyone, i havent posted in quite a while. I used to be on 100mcg estrogen only patch and found i had to reduce as body couldnt seem to tolerate dose anymore. I am now on 50mcg but thought i would try to stop altogether about a month ago as i always wondered was the estrogen causing my headaches. Well, i was great the first week & half then i noticed headaches became even more frequent, hot hot flushes and my mood was awful - everything was negative and everyone!
I am now back on the 50 patch since last weekend and am feeling so much better. Main reason for trying to stop was the headaches. Like some of you have said, Menopause is so so difficult to cope with at times but I have to say i dont struggle so much with my hormones these days as i did in perimenopause.
Sincere good wishes to all of you and especially those who are really struggling - it will get better x
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Hi Sweettooth,
Interesting to hear you have a problem with headaches. I get headaches quite badly and when I came off HRT before they definitely got worse. I found the very hot humid weather this summer absolutely exhausting - even on the HRT (though I'm taking a very small amount)I was finding it difficult to regulate my body temperature - got very hot a bothered. I'm withdrawing the HRT as winter approaches in the hope that if and when flushes return I can cope better.
One of the recommendations for coping with menopause is plenty of exercise but the problem is the hot flushes make exercise a nightmare. I'm an ex professional dancer so love keeping active - my joints are not particularly good and need to keep them moving or I'll seize up!
I'm trying to feel positive about the next few weeks but it's hard.
xxx
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Hi Dancingirll,
i sometimes get the headaches with the heat but then other times they start anyway, they mostly arent that severe - heavy fuzziness and are sorted with paracetamol. There have been times when i have thought i have got rid of them but then a cycle begins again!
What dose of gel are you on now? You seem to be going through this a long time like myself, i am 52 but started peri in my mid thirties. I hope you have better luck this time coming off, perhaps now that you are 57 it wont be so severe x
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Hi Sweettooth
Interesting to find someone else with similar menopause history. I'm on just under two doses of gel each day - the gel makes it easy to slowly reduce. I'm not sure how quickly I should reduce the dose as last time I reduced over 2-3 months but this time I think I shall do it quicker. My body didn't adjust well to the withdrawal last time & meno symptoms continued for 3 yrs afterwards before I gave in and went back on HRT. I also spent a fortune on herbal remedies etc. which never helped.
I think it is all in the genes - either your body adjusts well or it doesn't. I have friends who mention in passing that their periods have stopped and when I ask if they have had any flushes etc they shrug and say one or two a day for the first few months!!!!! Oh! how I envy them.
My mother's periods stopped when she was 37 and in those days there was no HRT - I remember her always complaining about being hot and she was very tetchy for many years.
Life doesn't seem to get any less stressful for me with older relations needing so much support and still needing to work, I think the pressures are worse in your 50s?!
The nurse has given me Vagifem to help keep things healthy down below - hopefully this will mean one area of my body will not be causing problems as a result of withdrawal!
I think my headaches are very much linked to how well I'm sleeping. A couple of bad nights and a headache will come on. Off HRT I get terrible nightmares and the quality of sleep is much worse. I remember when I went back on HRT that the first thing I noticed was I started to get good REM sleep which meant I felt more refreshed in the morning.
I'm rabbling again - too much to share!
Love DG xxx
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Hi Sweettooth
Got your PM - I couldn't reply - not a member.
Maximum dose of Gel has been 2 pumps.
After this week I've got a quieter time through october so hope to get some 'me' time.
Just hoping I can cope with withdrawal.
DG x
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Hi Dgirl,
Good luck with that, let us know how you get on :)
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Thought I would update on my new regime. IT WORKS! 18/09 I changed to continue from sequi. I bled on and off for six weeks and then constantly for another six weeks. But now nothing, it is lower oestrogen so that's good, seems to deal with the main issues. Vulvodynia is almost gone, not been intimate yet right enough. (Coward) but a bonus is my boobs have stopped the monthly cycle too and have decided to be on the smaller side which I am more than happy about. So a big positive for me.
How is everyone else who swapped or stopped regimes getting along?
Eddie. X
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Glad it's working out for you Eddie.
I can't add my story as I haven't swapped or stopped!
Long may the good feelings last for you anyway!
Hurdity x :)
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Hi Eddie,
It is so good to hear your update as I have been back on Femoston conti for 3 weeks after trying it for a while in August last year, but back then I got freaked out with the bleeding I experienced, so stopped.
I then experienced tremendous hot flushes, sleepless nights & mood swings (all things I had hoped were a thing of the past).
But at the moment I feel a lot better being back on Femoston, however at the back of my mind is the fear of having a period. But reading your post has given me hope. I know it is to be expected (bleeding) but it is still a shock when it happens.
I am so glad things have settled down for you & hope they will for me.
Note to myself:
Don't go running to doctor when I get a bleed.
Keep taking the tabs.
Get supply of panty liners/towels.
Keep us posted Eddie - I shall be watching.
Love Cazi xxx
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Eddie
Fantastic news!!!...so do you think the higher dose of hrt or the variance with the sequi (progestin) was the cause of your vulvadynia?? Is it gone completely now? Do you use a local estrogen?
Please post any info you think might be helpful.
Andius
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Cazikins, I too was concerned about the long bleed, but just before I was due to start the second 3 month pack I called the lady at vulval clinic who prescribed it and she said it was normal and if I could tolerate it a bit longer to keep going. Good luck with yours, I did have a tiny bit of spotting tonight but have been under a lot of stress recently and that maybe why.
Andius, I absolutely believe that the higher dose of estrogen and the fluctuation of hormones created the vulvodynia, I am still a bit tender, but that could just be thinning skin taking time to heal well. Has va for years before and maybe still a bit there. I don't use any local estrogen.
Eddie. X
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Doc has given me another 3 months supply & said to expect some bleeding but, if it lasts longer then 6 weeks at any time, or if I get bleeding after 6 months then I must get it checked out, so I'm happy with that.
I have had some light bleeding for the last couple of days & some bloating, hopefully it will pass.
Cazi x
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Hi Ladies,
Me too! I've just stopped my HRT after 5 years - or rather, my GP has told me to stop immediately and I wasn't for arguing. She put me onto Evorel Conti 5 months ago to address the dreadful bleeds I was having on sequential HRT (Estradot 50 + Utrogestan 200) after 4 years of trying out various preparations and having the same problems with each re. bleeding. However, the bleeds were worse than ever (on non-bleed HRT) and were roughly 1 week on, 1 week off. I have lost so much blood I am now badly anaemic and my only medication is iron tablets. I am totally fed up with the whole thing - and I've put on so much weight in these last 5 months (probably because of the chocolate and rubbish I've been stuffing when I was bleeding).
So, I've gone cold turkey and am wondering how long it's going to take me to turn into psycho woman again.
I'm being referred to the gynie clinic at the local hospital where I understand I'm going to get a scan to see if that can show anything up. If everything is ok, an option is Mirena but I've heard horror stories about this (bleeding and weight gain). I'm 53 and thought the worst would be over by now.
God, this menopause lark is no fun is it? I so envy my friends who simply sail through it with the odd flush....
Mags x
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MaggieM
Going cold turkey is really tough - I hope you're ok. When I was post meno I tried a variety of HRT conti pills but hated them all for one reason or another. I ended up with Mirena with Oestrogel which was ok but once it got towards the end of it's life (past 4 years and probably running out of progesterone) I did get some nasty stomach cramps which I thought was IBS but now I've had it removed I realise was the Mirena. Anyway, I reduced my Oestrogel dosage over 6 weeks before having the Mirena out and my flushes haven't been toooo bad but my VA is terrible. I have been using Vagifem to help with the VA for over 3 months now and I'm still getting awful bouts of burning - really unpleasant.
Just a thought - if you basically found the patch with utrogestan ok, apart from the bleeds, why not try that combo continuously e.g. Patch + Utrogestan for 25 days per month? DG x