Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Mer109 on January 20, 2017, 11:11:12 AM
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Hi all
No change in symptoms, balance/dizziness driving me insane, hips achy and legs feel like they won't carry me, back of neck really tight probably due to not moving my head much tho because of my dizziness. Have not left the house since 4th Jan, not functioning at all. Still taking the meds G.P gave for balance, dizziness but these are hardly touching me.
I put a call in for the surgeon who completed my op ( stupidly, in hindsight, went via insurance and the surgeon has not liaised with my G.P at all, so my G.P is just taking my word for op and the prescribed Tibolone presently, that's another hurdle. ( He thinks my balance/dizziness symptoms are due to a virus, this is the 7th week (since episode where I was woken to feel as tho the bed was being shook, my eyes having involuntary movements and committing, ending up in A and E, and no improvement, he dismisses me when I speak about hit, hormones, previous op.....
Eventually, a week later he surgeon has phoned me to state that the "episode" which I do believe was a hormone crash as you have mentioned is probably nothing to do with the surgical procedure, he has never come across this before but to stop Tibolone and contact him in two weeks, if I feel the need. (He is so bad at responding)
I have contacted our local Pals group who have stated south tees have no menopause clinic to contact for advice and I am not in the "system" re my TAH/BSO as I went via insurance. Fantastic.......
I have read on NiCE guidance that if you enter into surgical menopause as a result of surgery you should be referred to a healthcare professional with expertise in menopause, good luck there then, similarly if you are prescribed hrt you should be monitored by a healthcare professional with expertise at 12 weeks than annually, I was given Tibolone told to take for three years, case closed!!!!
I will speak to G.P re who is allocated healthcare professional and who is reviewing my HRT .....wish me luck as 1, he has no knowledge of my being prescribed Hrt and 2, he himself has stated his knowledge re hrt/hormones is limited. He offered me anti-depressant when I said I could no longer cope feeling like this and I needed support, he has referred me to dizzy clinic, app 3rd June!!
Apologies for ramblings, but I really need someone's opinion on stopping Tibolone suddenly, will I have another "episode" as this really scares me.
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Hi
Although I'm not surgical menopausal. I am post menopausal at 57. I started with the dizziness/off balance feeling aged 50 and suffered ever since. It feels like your walking on a boat or staggering after having too much alcohol. I always suspected it was a menopause symptom but my GP said she had never heard of it. Referred to 3 different ENT Consultants, Neuro Consultant, Balance clinics told I had Ladrinthitis (what for 7 years). I did notice changes in HRT like reducing my Oestrogel made it worse. So I agree this is due to low Estrogeon.
I am 4 weeks into Tibolone and yes I still have some dizziness but doesn't seem as bad as it was. Hopefully this will settle. I have almost become agrophobic because of the dizzies.
I think in your case it will settle in a few weeks. Not sure stopping the HRT is the best option.
Wxx
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Warwick you have just triggered a memory with me. Dizziness/nausea/lighthededness was one of my first memo symptoms and I think played a big part in social anxiety as I was afraid of fainting. There's been rocky boat times (not many) but mainly if I was reading on my side in bed plus twice out for meals I felt like I was sliding off my chair sideways which panicked me
This was BEFORE Tibolone x
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Thank you ladies,
The g.p and consultant immediately brushed away the suggestion that the balance/dizziness could be linked to hysterectomy/surgical menopause. I feel a little more normal now lol. I am due back to full time work on Monday after 12 weeks off and feel worse than I did in the weeks after my op so may have to re think as have not left the house since 4th Jan due to the feeling I am going to faint.
I know I am impatient and I am trying to self diagnosis the cause but just want it over with and back to normality. (My granddaughter who is 4 yrs old asked me when I will be better as it has been aaaaages since I picked her up from school) in reality the last time she was here and I was alone with her for an hour I taught her to use my mobile to ring 999 if she couldn't wake grandma - how bonkers is that, I am a sane 49 year old woman who is very quickly going insane
Thank god for this website x
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As an after thought, I know we are all different but how long do you think it takes for. the full effect of Tibolone to be present, does it slowly build up and build up till is reaches the required plateau?
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Well, going by the ladies here I'd say about 3 months. But all the good things (however many/few) there'll be probably won't come all at once. Have you had a good read of the other Tibolone post by Suzanne or Sooze ? Suzanne's Tibolone journey is worth reading
Don't forget though Mer you've had major surgery and ovary removal, that's a BIG deal in itself without the added worry of the Tibolone. Be kind to yourself. I'm sure you're coping well with Post op but hormones are a whole bloody different ball game x
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Annie,
This is how my social anxiety started too. I became and still am afraid of fainting in public. Seven years wasted due to this crap :(
Before my first episode I had a career and graduated 2008 delivered public presentations, public speaking etc. Now I very rarely leave the house because I not only have the phobia but have the dizziness. Was referred to Psychologist who agreed it wasn't caused by anxiety but has developed into anxiety.
I then found an article on line by Dr Steel re vestibular migraines without headache that is caused by low estragon.
I think with Tibolone you would get the worse of the side effects within the first 4/6 weeks.
Wxx
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Hello ladies.
Reading this post has reminded me of something that may be relevant.
I am one of those women who became post menopausal suddenly as my periods stopped abruptly, never to return having been regular as clockwork. This was six years ago and at the same time I was diagnosed with Ulcerative Colitis which is an inflammatory condition. I was prescribed anti inflammatory meds but a few weeks later I had dizzy spells and was told I now had Labyrnthitis. I thought it odd that I could develop another inflammatory illness despite already taking some pretty heavy duty drugs. As my periods ceased to exist at the same time maybe it was hormonal in origin? I continued with my meds and the dizziness resolved quickly but it frightened me and I recall walking around the house and listing to one side, it was like being on board a ship in a storm!
Wishing you well ladies.
K.
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I do find this interesting as well as bloody frustrating and upsetting. When my lightheadedness started it was like I was about to faint without fainting, no room spinning just that gradual detachment of reality and wooziness. I carried on going out without a problem but as these episodes were happening more when NOT alone like you panic set in I'd make a tit of myself in public (fainted in a full pub once when I was 19) so then started the fear of being around people, which I think then escalated to not wanting to be the centre of attention and would rather hide in a corner whereas before meno I'd jump at the chance of a night out and would be standing at the bar socialising and drinking all night without a care. I need the confidence back that I can stand all night without fainting, that no one is laughing at me or about me (well they might be but as long as I don't clock them) and that I can happily laugh and joke and enjoy my socialising again x
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Wow - Annie that is me all over.
I live in Manchester and used to love shopping and socialising in the Trafford Centre. Not been there or the centre of Manchester for 3 years.......
Kathleen - there is a link with dizziness and menopause.
Wxx
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Aw Warwick it's so sad isn't it ?
I'm worse with places that I know/might know people. I seem better with strangers or different towns
For example we hardly go out now but we still go camping and for weekends away overnight in hotels and although I have my moments in pubs and restaurants I am much better than if I was local. I just can't get my head around all this even though it all started in 2012 suddenly along with the other meno symptoms
It's not much to ask for is it to lead a normal life for us ? Very very cruel x
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Hello ladies.
Odd how this meno anxiety grips us. I can go into our town, shop in the super markets and meet friends for coffee but the thought of travelling any distance and staying in a hotel frightens me. I can only go to the cinema/ theatre if it is clearly understood that I can leave if I have a funny turn. I have done other things, meeting friends for dinner and going with a friend to the next town but they were days when the anxiety had faded for some reason. I find the whole thing exhausting and frustrating but mostly very, very annoying.
Oh well onwards and upwards ladies!
Take care everyone.
K.
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Aw Kathleen I guess then our upside is we can still manage part of it
It's the women that are suffering with both types that get it worse x
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Dear Mer!
I wanted to reach out to you, as your story so far very closely mirrors mine. I had my TAH/BSO in April 2015, and have been pretty much left to get on with it. It was only through going through NHS complaints that I managed to get a referral to a menopause consultant, but I went a whole year with no HRT (I felt ok in some ways, but I naively believed my surgeon when he told me I would be 'fine' without it. It wasn't until I read in depth about the long term consequences of estrogen deprivation that I panicked)! Since April last year, I have struggled to get my body to adjust/absorb/accept HRT - and I'm only just trying Tibolone and not sure if this is going to be the answer.
I cannot believe that in 2016, we are sending women home with no information, treatment or follow up following this life changing surgery! >:(
Can I ask, if you don't mind, why you had your ovaries removed? I know you said you had it done via health insurance. I might have some suggestions on how you can proceed to get better follow up, but as you say having the surgery privately does complicate things a little when it comes to after care via the NHS at the moment.
Please DONT stop your HRT abruptly! I have done this, and although I don't want to scare you, you can read back about my experiences in my previous posts. If you do stop abruptly, your body will no doubt receive a nasty shock again as your hormone levels will plummet quite rapidly without giving your adrenals a chance to catch up. The symptoms will be very much the same as the crash you experienced when you depleted your own hormones. If I can, I will try to give you as much support and advice as I can (although effectively, we're pretty much in this together as I'm still trying to find a happy balance - it's just that I'm longer out from my surgery).
Sending you hugs - and don't be afraid to ask anything. If I can help, I would be glad to! xxxx
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Hi Meri, A very similar thing happened to me post BSO, had hormone crash and surgeon did not want to know. 2 weeks post I went on femoston HRT, but by this time I was in a right old state, head almost detached from body, insomnia could not stand for fear of fainting etc. I think I got worse before I got better using Femoston and took about a month to feel anything like normal. I then developed bad headaches and found a meno specialist (private) who I got from this website and he eventually sorted me out (changed to transdermal patch, i.e. constant delivery of oestrogen and separate prog).
As Tempest says, do not stop the Tribolone unless you are switching to something else and please try to find a meno specialist in your area if you can to help.
It is very bad that certain surgeons will not accept hormone crash after BSO. I have never experienced anything like this in my life before.
Hope this helps a little, you are not alone.
Rhiner
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Hi, Rhiner!
Yes - you're yet another lady who this has happened to! It's a disgrace, it truly is, that surgeons don't tell ladies about this and then expect us to get on with it! It's absolutely horrific when this happens, isn't it? Only us BSO ladies truly know how awful this is and it's hard to explain to anyone who hasn't experienced it. I'm glad Mer has posted here so that at least she knows she isn't alone!
How are you doing these days, Rhiner? I always like to keep connected to my fellow BSO ladies. I hope things are going well for you? xxxx
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Hi Tempest,
It is really bad that this is happening and that the surgeons literally'take them out' and then thats it job done! They are just not bothered and refuse to accept that it is a crash of hormones, I am still seething about it almost a year on.
I have been doing Ok up to mid Dec then a few bad symptoms have hit, starting with anxiety and faintness. I have had a couple of the bugs that have been doing the rounds and it seems to deplete the oestrogen. I am now starting to get strength back etc after 5 weeks. I have seen that you are now trying Tribolone, I do hope you manage to get sorted and hopefully this will be the one for you, you have certainly been through it! xx
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Mer are you on any anti-nausea medication which is sometimes given for balance issues? If so, look into a possible DYSTONIC reaction which can be an adverse effect from the medication...it is marked by involuntary and spasmodic muscle movements e.g it can affect the eyes, neck, tongue, limbs etc.
All the best, I feel so sorry for you!x
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Dear Tempest
One overy was said to be cystic and had ruptured, the other once the surgeon went in was said to be "chocolate cyst" the overy was adhered to the uthrea, causing separate issues with water works. His attitude prior to surgery however was, as your age you have no further need for ovaries and it's more to go wrong in later life. I didn't question him - stupidly
Anyway, visited the GP and asked as per NICE guidelines, after surgical removal of overies, who is the healthcare professional with expertise of menopause I can be referred to and similarly who is the healthcare professional with expertise of menopause who is to carry out the review of my 3 month use of HRT and can I have bloods checked for levels
He was blank and confused, stating his area of expertise was with the male species ...prostate and he was not aware of any referrals being completed on menopausal women and bloods tests are not carried out in regards to hormones due to fluctuations, results are not accurate
He has suggested I make an appointment to see a female GP in practice who apparently has more knowledge than him! Which I have done for Friday. I don't hold out much hope!!
I am so confused, my systoms remain, the G.P neither the surgeon have recognising the 'hormone crash' no one has suggested checking my level of hormones (would this be a blood test) the surgeon has only just contacted me at the suggestion he will be receiving more money ( annoying that he didn't reply to my contact previously) His advice was to stop Tibolne with no substitute mentioned but see how I go, which I haven't done as yet as I am scared of consequences?
My balance/dizzy issues were horrific last night, woke my up when I moved in my sleep, feeling like I was being pushed and pulled around....
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Hi Mer109
In your position I would want to explore whether the Tibolone was contributing to or even causing my symptoms - as has been said the dizziness etc could be the hormonal shock caused by the operation but it may be that Tibolone does not suit you or is not providing the right hormonal "milieu" after your op.
I understand that it has been prescribed because of its weak androgenic action as well as oestrogen but has there been a suggestion of for example starting a low dose oestrogen patch instead and gradually building up?
There would be no point testing your hormones I don't think since from what I recall Tibolone doesn't produce an increase in estradiol (might have remembered wrongly here!).
Hurdity x
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Good advice actually, Hurdity! I was going to suggest to Mer as she has an appointment on Friday that she ask the female GP for a switch to Estradot or similar. At least if things improve (which hopefully they will, Mer) then you know it's the Tibolone.
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Thank you Ladies for taking the time to advise, should I continue Tibolone until Friday until I see female GP do you think? I am thinking I should? Forgive my ignorance, it's a whole new world lol but what is Estradot.
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I should continue Mer, yes. It should be no problem making a straight switch over. Estradot is a very small estrogen only HRT patch that is available in various strengths. You replace it twice weekly, and for those that do well on it it supplies a steady release of hormones. Hurdity I'm sure will be along shortly to advise as she has a lot of experience of using Estradot over the years. :)