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I have been on Tibolone since 1986 or thereabout

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[b:debe88c5c4]I HAVE BEEN ON TIBOLONE FOR OVER 25YRS I AM 78 YRS OLD AND I HAVE JUST BEEN TOLD BY A STAND IN DOCTOR THAT I SHOULD HAVE COME OFF TIBOLONE YEARS AGO, AS IT CAN CAUSE STROKES IN OLDER WOMEN. HOW COULD MY OWN DOCTOR HAVE PRESCRIBED ME THESE TABLETS ALL THESE YEARS WITHOUT FINDING OUT ABOUT THE LONG TERM PROBLEMS? SURELY THAT IS HIS JOB, IT IS ONLY BECAUSE THIS STAND- IN DOCTOR WAS CALLED IN FOR A VERY BAD THROAT INFECTION THAT THIS DOCTOR WENT THROUGH MY MEDICATION AND ASKED HOW LONG I HAD BEEN ON TIBOLONE AND OTHER MEDICATIONS . AND WAS AMAZED TO FIND HOW LONG I HAVE BEEN ON TIBOLONE. I NOW DONT KNOW IF I CAN JUST COME OFF THEM AND WHAT WILL BE THE RESULTS OF COMING OFF THEM WILL BE, I AM PETRIFIED[/b:debe88c5c4]

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  • LadyPink
    LadyPink Guest

    Posted

    Dear ladies, I have been on Livial for about 20 yrs and am 70 this year. Feel good and well on it. Have my regular health checks, mammograms etc. have tried to come off it twice when there were health scares but all those awful symptoms of menopause came back with force. After being widowed I remarried recently a man 8 yrs younger than I although his friends thought I was the younger one. Several doctors(male) in the past have tried to tell me I should stop taking it after so long - but why? Surely it's all to do with the quality of your life NOW not what might, or might not happen in the future. Now a stand-in doctor at my surgery has refused to prescribe Livial on my repeat prescription request. I am furious. I consider myself to be an intelligent woman who is aware of the risks as well as the benefits. I read all there is to read on HRT and I consider that it should be my choice. My own doctor returns from holiday in two days so I shall discuss this with HER then. I trust she will see my point. I feel good, it obviously suits me and with a younger new husband and a fantastic (unexpected) great sex life, I want to continue taking Livial. There's a book by the former MP Teresa Gorman "Hooray for HRT' who up until last year and in her 80's was a great advocate of this. It's worth reading.
  • jowanders
    jowanders Guest

    Posted

    Dear Lady Pink

    You sure have the right to continue with your prescription. However some doctors won't take the responsability for the side effects. If your 50 or 70 it does not matter for him. How many men are taking viagra or something simular....the side effects are dangerous too.... .. If I were you I would not even mention to my own doctor that your stand in doctor did not want to prescribe it. Just ask for the repeat. Why waking up sleepimg dogs? It is your choice. You know the side effects and yes your life is about now. If you live healthy,  get enough exercise and are happy..you know the  risk of sideeffects deminishes drastically. Go for it and let us know how it went. Good luck! 

  • LadyPink
    LadyPink Guest

    Posted

    Dear jowanders,

    Went to see my female GP on her return to the surgery. Told her that a locum doctor at the practice had refused my Livial repeat prescription, whilst she was away. She was very apologetic and said it was MY choice whether or not I should continue taking it. She added that the views of the other resident doctors at the practice had now changed and that the head of Gynae/Obstetrics at our local hospital was also a great advocate of Livial being continued by older ladies if they so wish. His thinking was that ladies on HRT, would be having regular health checks and any problems would be picked up faster. We discussed the pros and cons, plus the various reports and surveys done and she repeated that it was MY CHOICE. I came away feeling relieved and with a spring in my step. So it seems my thoughts on so called experts was right 'Experts are always changing their minds!' 

  • jowanders
    jowanders Guest

    Posted

    Dear ladyPink

    That is Fab news. Pays to be persistent, you know your body the best.

    Happy life!

     

  • barbara92906
    barbara92906 Guest

    Posted

    Wonderful encouraging discussions..I myself have been on Tibolone for well over 20 years, and am 79 now, but recently with different doctors they were telling me to come off Tibolone as with my age, and side effects I have been on them long enough.   There is NOTHING I can do about it, they are all inisistant that I come off them!!

    It was my choice that I insisted on attending Gynae. clinics, in desperation..but again, they said the same.  I went to lots of trouble writing everywhere i could, i.e. the makers and suppliers, worldwide! but still no joy.  I have had lots of medical problems but things like two hip replacements, and knee replacement....I have temporal artritis, and now Polymyalga....all new big words, but one learns in life, if one studies....my lower teeth have fallen out, gums receded badly, due to bone problems (and many other things, will not bore you further!)....and recent years I see Livial/Tibolone helps Osteoporosis.....but still I don't get any help from GPs or Consultants.....they still say I must come off  Tibolone, so no longer can have them on repeat.  I have had to come off them now for about 3 months....like one of the guests, I have found Tibolone so very helpful, with a younger partner!.....I have tried other things, and had to settle with some cream!.....o.k. but not as good at all.   BUT during the last few months, and I work it out now, since I came off Tibolone, I am worse with Polymyalgia, and Osteoporosis.....pains in arm worse, and hips and legs.....now been told by a consultant, that it is bone problems in my shoulder, and with Polymyalgia affecting my neck also....I am to have X-ray for shoulders, etc...and I should have Physiotherapy.....NOW, I have seen over and over again, that Tibolone is helpful for bone problems, and I have just copied and pasted the following:-  Tibolone is also prescribed to help prevent osteoporosis (bone loss).     SO just why can't the doctors see this....perhaps i am wrong....they are trying to protect me, but i am feeling worse since coming off Tibolone strangely enough, and it IS true, and all my bone problems are getting worse.....I now have to try and cut down on the steriods, and take more painkillers....something like 12-14 a day. 

    Like many of these Guests here, I felt SO good being on Tibolone for the one reason....all my past distant life has been problems - then divorced, and since on Tibolone and a younger partner life was so good....but now it is changing.....very sad!  I can see how some are furious, so am I.  A few years ago I did have a very professional consultant say to me, that I could be on Tibolone indefinitely, I was early 70s then....she has retired, and i cannot get hold of her anymore, although I still have her words written in a letter.  I see  one guest says the head of Gynaecology in   her local

    hospital was also a great advocate of Livial being continued by older ladies if they so wish.  I wish that happened at the hospital I went to!....so you see some consulants do still agree with Livial being taken by older women!.....

    Yes, it does pay to be persistant, and I have done, but no luck yet....I am getting worse with the Osteoporosis, so with both problems, I feel that going back on Livial would be so beneficial....I am young at heart, and keep so busy at home - I love life....have grandchildren....I love cooking, and computer, etc......but with all the medication and pain killers now, I don't get out much, and drive at the moment.....

    It is our LIFE....but I am being told what to do..... maybe  it is right, I am not sure....but   life is not the same now, and it should be.  Yes, I read the article by MP Teresa Gorman - Hooray for HRT also.....it was excellent reading....and al 80 she was enjoying life....also read a similar article on Lady Margaret Thatcher.....but she had to come off HRT in the end.....poor lady, we saw how she became!

    FOOD FOR THOUGHT....any comments? I would be pleased to hear....

    Take care......God is watching us from a distance.....!!!!

  • LadyPink
    LadyPink Guest

    Posted

    My heart really goes out to you. Isn't it awful being dictated to by medical professionals, when as you say "It's MY life". We should be able to decide for ourselves. This is the twenty-first century for goodness sake not the dark ages. (I am the lady who after nursing my late husband for many years until he died, married a man two years ago, 8 years younger than myself. I am having the time of my life thanks to Livial - and will in a few weeks be a young 70). I dread the thought of coming off them and when I did try (twice) after scare reports via the national press back around 2002, I had the most awful aches, pains and horrible sweats all the time.

    Is there another GP at your practice who would be sympathetic to your cause, could you pay privately for your pills or even maybe buy them online? You sound an intelligent lady who is, like me aware of the risks etc. It's our quality of life NOW that is the important thing, NOT what MIGHT happen in the future. We all have to die of something eventually so why not let us feel as well as we can for as long as we can. 

    The hospital I was referring to was Frimley Park in Surrey but I'm sure it isn't the only one advocating Livial's (Tibolone) continued use for older ladies. I would be interested to hear your further thoughts. I for one would try other avenues. Good luck and best wishes.

    • barbara92906
      barbara92906 LadyPink

      Posted

      Hello. wow, so kind of you to reply..i dont usually write on blogs like this, and your kind remark that your heart goes out to me..so lovely......nice to get remarks like that.  Yes, I am suffering, but try to keep happy, dont we all!  My story a bit different , i did not have good marriage really, over 40 years, i split, he divorced, and remarried, now has dementia, arthritic, can hardly walk, and has carers in..he is 82....i shall be 80 end of year..(trying to arrange a sort of party, as i do in life, done it for many a time..had my own business , office in town for over 30 years, and worked from home..secretarial and typing, as you see!)..I also helped to look after 7 relatives over 20 years,inc. parents, my mother with me with cancer, died at 64....back in days when i had office, and was sec. to three charities!....not bad..so still keep going if i can.  Like you now, i have awful sweats, sitting here pouring off me, and pains, due to polymyalgia, if you look that up, and temporal artritis..bit words, i have learns..i have had 2 hiop and knee ops...have my second unbilical hernia growing..no bottom teeth, i cope, liquiding some food..i enjoy cooking, and cook for partner, and family at times..my hobbies, typing, writing, cooking....some tv....not so much these days, dont have time!! used to love LOOSE WOMEN!

      Well..the two GPs now are young. i nearly changed to a different surgery, but decided not to..quite convenient where i am now..and i get help from partner , sometimes daughter, who is so busy, like me..it is in the genes, and her daughters to..we keep going!....my partner is nearly 13 years younger than me!....you see what I mean!..best time of my life last few years, well 15 y ears we have been together now..i am worried when docs. and hospital say at 80 i should come off livial....i thought of paying, but rather not....i hav e written all over the world, to addresses on the leaflet..no joy on that, they only make them.As I was told in 2007 by a very senior consultant lady, who has now retired, that i could be on livial indefitiely, i have it in writing, as i said.....but no one takes any notice of it..not even the hospital where she was....i cannot get any replies from her now....on Twitter or Facebook , or anywhere, which i am on,incidentelly.....as i have family, grandchildren, and many old friends worldwide, i kept in touch with, hence so busy..Thanks for hospital address.....it will keep in touch, and so kind of you to write....hope you get this o.k.....i must be careful what i write now....best wishes....and it is just too hot....i dont like this heat....swollen legs....feet, i have special shoes made , and go to podiatry every three weeks....x ray of shoulder today, after seeing professor rheum. on monday....and still on high dose of steroids, and told to cut down, and hve more painkillers!! hey ho!! KEEP SMILING AS WE DO....and working on having a party!! hehe.....excuse quick bad typing. i am in a rush..i have five grandchldren now, four in early twenties..been at uniiv..never know when they might come home..but they go on holidays all over the world these days!...hey ho..i will not go away this year,can't!..hehe..had my moan, just explaining..thank you for reading....good luck to you to..God Bless.

  • LadyPink
    LadyPink Guest

    Posted

    Hello Barbara, Reading your posting, I'm not sure if you are saying you have, or haven't seen one of the younger GPs? If you haven't, then I would take a chance and talk to them - all of them - separately if need be. Don't give up. The younger medics are or should be up to date on the latest findings. It wasn't that long ago that I was reading a report online somewhere, where it said they were reversing previous findings and that in some ladies it was beneficial to stay on HRT. I would ask too, what exactly are the medical reasons WHY you are being refused. Saying you are too old and SHOULD come off Livial, to me, is not a good enough reason. 

    I learned when nursing my late husband through an incurable and untreatable illness that whenever we needed help from any of the medical/caring/social services departments, was to SHOUT the loudest. You really have to be a nuisance and a nag. And us ladies are good at that. Don't take NO for an answer. Assure them you know what you're talking about though. Tell them you've read all there is to know about the drug, you've read the reports and findings

     

    • barbara92906
      barbara92906 LadyPink

      Posted

      Hello "LadyPink"..sorry delay, hectic day, and x-ray,too hot!..now gone 1.15 a.m..granddaughter flying home to see her sisters graduation thurs.!excuses!..me..!!anyway, yes, I have seen younger GPs. lots of changes at our medical centre, used to have good GP, ..younger ones now, but that is how we see it when older eh?! I worked at hospital after school days, and realise there has to be students for next generation of young doctors!..so have calmed down now.they both do not want to prescribe, nor to the Gynae. hospital..Yes, I saw reports about HRT also.  The reasons they say is that I am nearly 80, and that side effects are cancer and strokes!..I realise that..so does other medication i am on. With painkillers now, i take about 25 pills a day! woow!...i rattle, as i say!! hehe. 

      I empathise with you after years of nursing your late husband..it must have been a trialling time, but you were there, and you did it..that is good..and now you have been rewarded by the sounds of it..God Bless you.

      Yes, I have been SHOUTING in my own way, but I am rather quiet really....I have WRITTEN AND WRITTEN AND WRITTEN, to the Tibolone addresses over the world, and the doctors, and the surgeons and consultants i have been under.....still no joy..I am a nuisance and nag with them,hehe..but Monday, i saw another one, and he was leaning towrds what i was saying, but still NO..he says i am having other tablets that will help with the osteoprosis.....now Livial I have had for years, for HRT, but...when you read instructions, and read on internet,i t says it helps with Osteoporosis...all over the place it says that....and now i am off it , I am suffering more with pain, the last three months..shoulder, hips, legs, and of course with the heat to make it worse, I sweat, headaches in the mornings, and pain when i get up..and so on.....enough moaning..but i am stil fighting this, and going to write more this week, I am sure really it is the NHS in this region, are cutting down on costs of prescriptions, i note it with other things. And your area can prescribe....and others, so it goes to show i think. I certainly have read things alot!!..

  • LadyPink
    LadyPink Guest

    Posted

    Continue.../ Sorry, Barbara - my laptop froze on me. Yes, tell the doctor, that you WILL ACCEPT THE RISKS. You can stress to them too how it's making you miserable and how your aches etc are worse since being off your Livial and if things are left as they are, it's going to affect you and your partner. All the best and let us know how you get on. 
    • barbara92906
      barbara92906 LadyPink

      Posted

      continued..yes, computers do that!! haha..my old one did, now i have a new one a few weeks ago, but it is a desk top one..used to these having had an office, anyway..yes, I did tell the original Gynae. senior professor consultant, a few years ago, i accept the risks, and she understood, and said i could be on them indefinitely, i have it in writing, no one will take any notice!..and she has retired, and cant get hold of her anymore!!!!..grrrrr..!! she was so lovely..trained in that field. I feel convinced the pains are worse the last 2-3 months, because i have come off Tibolone..i shall see what x-ray on shoulder proves after today, result in a week!..i had hip x-rays, and they proved o.k....no hip replacements to be done...so i am still battling!! i will..and will let you know. must away to bed..been cooking whilst on my own, and now my granddaughter back in England, she text..has to drive home.... busy women eh?! take care. B.
  • LadyPink
    LadyPink Guest

    Posted

    Oh dear Barbara, I don't know what to say. You seem to have tried everyone for an answer and they all appear to be refusing you. It's looking pretty hopeless isn't it and as you admit, you are on an awful lot of medication for various difficulties, so maybe it's time after all, to surrender to medical advice?

    I am a great believer in discussing things with people face to face so I don't think writing letters will do much good. Letters I'm afraid do (these days) get pushed to one side and forgotten. As you appear to have seen just about everyone I think maybe you have to bow to their medical knowhow. I am expecting much the same to happen to me eventually. 

    The only solution is to buy Livial privately but I hink you said you wouldn't do that. Many years ago when I was living overseas I could buy them for around £30 per pack. 

    Hope you are feeling much better very soon. 

     

    • barbara92906
      barbara92906 LadyPink

      Posted

      Thank you Lady Pink..you are kind..i know letters get pushed aside, (like mine sometimes, but get round to it in the end, secretary!!) but some are read..i have other ideas still....I know now that my pains in the last 3 months, are really due to coming off Livial.....it is the 80 age!!!!..the younger generation think we are past it!!!! haha.. hope you dont get that trouble eventually!..I read that M.Thatcher did..bless her..and others i will not mention. I have read a lot.  I am nervous about buying on line..the cost would be o.k....but not sure I could anyway. Take care, another hot day..old people told to stay in,l ike they have to in the cold snowy winters.  You are still young!! ..will be in touch if i get any good news for you.regards,B.
    • LadyPink
      LadyPink barbara92906

      Posted

      Wish I could have given you more help. Agree with your reference to the young - they think they have it all at times, and adults are passed it after 45 - ha ha, little do they know! 

      Well, I wish you well Barbara I really do - you sound such a lively lady and I hope I am like you when I reach your age - I'm not that far behind!  Let me know via this forum if you have any positive news. Best wishes.

  • gecko2
    gecko2 Guest

    Posted

    I'm 67 and have also been told that I have to discontinue using  Tibolone - or Livial as I know it here in Australia.  No thought has been given regarding how this will affect my life and current good health which is, I find, a typical attitude.  I believe that fear of litigation is predominent in the reasoning, not my health, which is what it should be.
    • LadyPink
      LadyPink gecko2

      Posted

      Hello Gecko2, Love the name!  Well my GP has departed from our medical practice and I now have a new one, but luckily she's a young lady too and NOT a man (what do they know about us females apart from what they are taught) and I'm happy to say she's another doctor who's all in favour of us older birds remaining on HRT. I'm now 70 and have been on Livial for just over 20 yrs. Apart from a bit of aching in the legs these days -  probably from too much gardening - I have been keeping extremely well whilst others all a little younger than I, who have never had HRT have had heart problems and cancer treatments. My previous lady GP told me that a lot of doctors in the UK are beginning to change their ideas. Ladies who are on HRT have regular check ups so SHOULD any problems arise these are investigated without delay. They are finding the HRT ladies too, seem healthier and are seen less in doctors' surgeries for aches, pains, depression and so forth. In other words we are saving our National Health Service money. If you can convince your doctor - I bet he's a man - that you know all the risks, you've read many if not all of the reports, and that you have regular blood pressure checks, smears  and mammograms maybe they'll change their minds. They say our beloved Queen Mother who lived to 101, as well as Maggie Thatcher were both on HRT for years. Not that I'd want to live to be too old, but at 70yrs I'm still having an active sex life with a new husband 8 years my junior - need I say more. 

      Did you ask your doctor "WHY?" and could he or she give you a good enough answer. After all you said your health so far has been good too. Why should that stop. It's all about QUALITY OF LIFE - NOW not what 

    • LadyPink
      LadyPink gecko2

      Posted

      Sorry pressed the send button too soon ....

      I was saying, it's all about the QUALITY OF YOUR LIFE NOW, not what MIGHT happen in the future. Go back and see if you can see someone else. This subject gets me so angry..... Let me know what you decide but don't give up on Livial without a fight.  Lady Pink

    • gecko2
      gecko2 LadyPink

      Posted

      Thanks for your inspiring comments LadyPink (love your name too!)  I'm seeking a second opinion next week from someone I really respect and who I know will listen to my concerns and arguments.  (she used to be my doc but she left to have kids and then came back on deck for only a couple of days a week on the other side of town so I started to use a more local clinic).Both of these doctors are female but are poles apart in their paitient relationships.  We are able to go to whomever we choose here in Oz but it's finding that doctor you feel most comfortable with, isn't it?  The blokes are OK if you've got a sprained wrist etc but for anything to do with female matters, go to the source I say.  gecko (by the way, I have gecko's running about the house and making their funny clicking calls all the time)
    • LadyPink
      LadyPink gecko2

      Posted

      Ha ha - I wondered if you'd got a gecko? We don't have 'em here in UK but used to get them in Saudi. I was there for around 6 years when my late-husband worked there. Keep in touch - us girls must stick together on this subject. We're the first generation to be able to take advantage of the wonders of this type of medicine so why shouldn't we use it to have a better quality of life. Hoorah for HRT that's what I say! LadyPink
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