Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tempest on June 08, 2017, 12:38:39 PM
-
Today I had a consultation with the wonderful Louise Newson who has prescribed Evorel 50 and Testim, both to start immediately.
None of this would have been possible without my brilliant Hubby and family who have never given up on me, and who knew I'm not crazy.
Of course we've had to turn to the private sector which is a total disgrace, but I have battled for 2 years to get treatment via the NHS since my oopherectomy - often with long waits and no GP or Consultant input between appointments when the prescribed HRT clearly wasn't working.
It's going to take time and patience, but at least I have some hope. xxxxx
-
Great .....sadly a lot of us have had to turn to the private sector.
Fingers crossed for you . 😊
-
Thank you so much, MJ! Yes, it seems to be the ONLY way to get effective and attentive, personalised care these days. >:( xxxxx
-
So pleased for you Tempest, wishing you every success. Remember, we're all rooting for you! :ola:
Many of us have been forced to go down the private root on occasions, however, I always think that if we can pass on our experiences on here the advice is free for everyone!
Lots of love to you xx
-
Tempest have you read my magazine article in the " menopause matters " magazine on line , there's a post here about it .
It's apparently going to be tweeted by quite a known sexual health person , I have also been asked to do a VA video. X
-
Tempest Dr Newson has just tweeted my story.
Could end up anywhere . Greatnos all I say.
-
Tempest that's the same regime as me (+ mirena) and it works well, I hope it works for you too. I got mine on the nhs and only sorry you had to go private for the same regime; it does seem to be a bit of a lottery!x
-
This is fantastic news !!!!!
Keeping everything crossed for you my dear friend xxxxxxxx
-
Wonderful news Tempest!
Wishing you lots of luck, the added T helped me so much. My ovaries are getting whipped out soon so glad I've got the T already and not having to fight for it!
Hugs to you.
Xx
-
Great news everything crossed this works for you xxxx
-
Fingers and toes crossed Tempest x
-
Everything crossed for you Tempest xxx :)
-
Really hope this is the one, Tempest! :foryou:
-
Oh MJ :o ....... [what's a tweet :-\]
Well Done Tempest - you deserve to get sorted! Life's too short to stuff a mushroom ;-). Keep that Chart/diary then you can write The Book!
-
Hey Tempest - hope this works for you :)
Hurdity x
-
Hi Tempest
I sooo pleased for you ;)
Just for the record (it may help) I liked Everal 50 patch but FOR ME I fond it was better to change every 3 days as for some reason I felt a blip if I waited until day 4.
Good luck ;) Wxx
-
I also change mine every 3.5 days rather than alternating 3 and 4 days (3 days might be even better - just I like to keep the same days!).
Hurdity x
-
Thank you all so very much! :) I'm a woman of few words these days, as i'm battling crippling anxiety most days now (along with mood swings - ugh)!
Yes, this is what complete estrogen depletion looks like after over 2 years post oopherectomy, and its not pretty! I have literally thought I was losing my mind over the last few weeks, and then my brother (thank goodness for big brothers) decided to take charge, and arranged a break at The Priory and the consultation with Louise.
I'm so grateful for the opportunity to work with someone I can consult closely with - we might not get it right first time but at least I know that she's empathetic and as a fellow HRT user herself, knows all the ups and downs of trying to achieve good hormonal balance.
MJ - I need to acces the article, I've been dying to read it but only had my phone the last week or so and I couldn't view it! I'm making it a top priority. :) xxxxx
Annie, you're always a dear friend indeed! How's the Estrogel going, and have you added the T yet? Louise says women shouldn't be afraid of using it. Problems only happen at very high levels - a pea sized blob is always going to be fine, and it takes a good while to even 'register' with the body which is why she has no qualms about starting it immediately.
She has just returned from the International Menopause and Andropause Conference in Amsterdam and testosterone replacement was a hot topic there, as you can imagine! xxxxx
Thank you, Hurdity! I know you always said I probably wouldn't feel better until I added T. I've always remembered your words, but it's been a very hard battle to get it when it shouldn't have been! This has to stop, doesn't it? It should be available via the NHS to all women who may benefit from it. xxxxx
-
That's a great tip, Warwick - thank you! Louise is making sure I have a very good supply, rather than the measly one box at a time my GP would only agree to when I tried Estradot.
I can also apply these to my thigh, which I'm hoping will be better as I wasn't getting good absorbtion on my tummy from the Estradot, and was afraid of 'losing' them if I stuck them on my bottom! :o
Louise helps so much with 'trouble shooting' too, and doesn't make you feel like its your fault when something hasn't worked before! xxxxx
-
What can you do to ease the anxiety? Regardless of the cause, it can drain the whole system :'(. Knowing why anxiety hits me doesn't help as it is SO physical.
-
Hope this works for you Tempest let me no how things go with it I cant afford to go private at the moment but hope to save enough soon to see someone, so would be glad to no if it helps with anxiety xx
-
Hello Tempest.
You have certainly seen a fair share of experts in your quest for hormonal balance and I hope your new regime works well for you. A personalised treatment has to be the gold standard and hopefully you are on the right track at last.
Wishing you well and I look forward to reading your updates.
Take care.
K.
-
Estrogel is so far so good, thanks for asking Tempest. I'm on 2 pumps now and a little bit of Tostran but to be honest I do all this first thing waking up with no contacts in and dry eye from the night so have over indulged in the Tostran a few times!
Night sweats seem to have gone and although social anxiety is still there it may have improved a tad I'm not sure but will make a decision soon whether to fess up to dr about it and maybe try something to help, I'm just so scared to try anything in case I get worse because of side effects ! Xxx
-
Nice to see things are looking up again! Hope you had a good experience at the Priory.
-
so very pleased to hear this Tempest, I had to go private too to get sorted, the same as many others, which is a real shame. After 2 years I really hope it works for you. Keep us posted.
Rhiner x
-
Great news Tempest, so happy for you & hope this regime works for you, fingers crossed x
-
That's good news, Annie! Louise says a bit more or less really doesn't matter too much as long as it's not loads! :)
We had quite a chat about Testosterone and she says the effects are accumalative and quite subtle at first - it's not as dramatic as estrogen and takes a bit of time. 3 - 4 months is the usual, so I'm hoping if you give it some time that this may be the answer for you! xxxxx
Anjia, I'll certainly keep you posted! I'm noticing a definite trend here in Scotland of women not being able to get testosterone when it's clearly indicated, and as I know you're a fellow oopherectomy lady you should certainly be allowed to try it just like me! Our devolved NHS is a total mess - I'm seeing rationing left, right and centre which is worse than in England (most of my relatives live there).
I'm getting 'political' here but it's even happening in mental health where there is a huge push to cut drug prescribing as its costing NHS Scotland too much, but it's been drastic and often leaving very ill patients without much needed medications. Goodness knows where this is heading.
I met a guy at The Priory whose family were forced to raise money for treatment privately for their schizophrenic son . The NHS hospital he was in had 'ran out' of his medication and he was left for days in a terrible state. How on earth can this be allowed to happen? :o xxxxx
Dear Kathleen - thank you! How are you fairing these days? xxxxx
-
Great news Tempest!
Will your consultant now write to gp telling them to continue prescribing testosterone for you ?
-
Everything crossed that this works for you, Tempest. x
-
Thank you so much, Dazned and Coldethyl!
After my 3 month review if all is well, she will write to my GP to ask to prescribe. I wouldn't be at all surprised with current GP if they STILL objected but as soon as I have my DEXA result back (I still haven't received it), I will be changing from this practice as I've had an awful experience with them over the last 2 years. I was explaining to Dr. Newson about it all today. :o
I'm quite happy to continue to receive my prescription privately if I have to on repeat. Anything to keep stress levels down! xxxxx
-
Tempest 😊 Reason I mentioned article is because , it is aimed at GPs/medical professionals equally to women , and is very spot for GPs such as yours , I would buy a copy and give one to your GP.
They should realise this magazine is Dr Curries , and the piece had to go through Dr Currie for approval , so it's not a " coffee/chat" from another type of magazine and as Dr Curries said a " powerful piece " and I feel will shame some GPs , for how we are treated. If anything give it as a parting gift.😉
Makes my blood boil , as I say in my piece" have we moved on from sanatoriums/ hysterectomy to cure " hysteria" no " .
-
Tempest I found a good gynae privately here in NI - but she wouldn't discuss testosterone when I told her I had zero libido!! She was going to that conference in Amsterdam but I'm not seeing her again for 6 months. Will you PM me details of Newson please and cost ? I am still not getting it right - I increased estrogel to 100mg but had dreadful adrenaline surges all night. Still a dead feeling in left hand and leg etc anxiety so bad I started CBD oil this week. I've got referred to nhs meno clinic so I'll see what they say (although god knows how long that will take!!)
I am so glad you are getting somewhere - keep us posted on progress x
DaisyB xx
-
Tempest, you were noticeable by your absence and I am glad to see you again, with more positive news. I hope this will be a turning point for you as you have been struggling greatly.
Your fortitude and tenacity are commendable and thank goodness for your lovely family and your wonderful big brother x
-
DaisyB - have you had a recent spinal X-ray or MRI Scan? Your apparently numbness may well be skeletal rather than hormonal (sorry if you've already said :-\)
-
Dear Tempest,
I'm really glad with these news! I will be thinking of you every day, hoping for the best with this treatment. You go girl!
XXX
-
Oh bless you, all of you! I haven't started yet as I need to visit the private pharmacy in Glasgow to have my prescription dispensed.
Daisy, I'll certainly PM you - no worries!
And MJ - great idea! I'm going to pick up a couple of copies of the magazine - it'll make the PERFECT parting gift to my GP! I think every surgery should subscribe to the magazine. You're an amazing lady for coming forward to speak about VA openly, and this is going to be the start of bringing this 'taboo' out into the open at last.
I was alarmed just last week that my MIL has been 'treating' hers with E45 for years! No wonder she's been constantly trecking back and forth to the GP with UTI's! Why the HELL don't GP's pick up on this and offer routine examinations? Oh, wait.....I think I already know the answer...... >:( xxxxx
-
CLKD - chiropractor did X-ray - to do another follow up scan on Monday. Problems with neck - he thinks that's the trouble - I just don't know. I started b12 whilst waiting on bloods to come back - think is all symptoms started at same time so to me all related to hormones going haywire. But I'm not a dr ;) so we'll see.
-
Wonder what showed on the X-ray ? Did he send a report to your GP? Maybe gentle physio.?
-
C1 & 2 main prob - said would effect and aggravate nerves. Don't know why but I'm not convinced 8) showed me X-rays etc and I don't disbelieve him - I just feel it's more related to whole endocrine system being out of sync :-\
-
But C1/2 is the easiest to treat .......... there can be referred pain and sometimes 'numbness' down the appropriate nerve root/s. Of course a drop of oestrogen can aggravate an already present condition ::)
-
Indeed, CLKD! I'm waiting for a referral (yes, ANOTHER one) which the AMU consultant made as he was concerned about the level of pain I'm trying to manage from my previous spinal surgery.
It's got a LOT worse since my oopherectomy 2 years ago, and I'm stuck as I can't take opiates or NSAIDS due to allergies (they're on my 'banned drugs' list from the anaphylaxis clinic).
I also previously had a syrinx in the thoracic region of my spine, and he thinks that although it collapsed on its own that there may be a problem there again as I had loss of grip upon his neuro. exam.
I really feel for you, Daisy! I might be wanting to join you on the CBD oil as its good for pain relief too, and I'm running out of options!
The only way you can really diagnose nerve compression is from MRI of course - the xray will only show bone structure but it can give some idea if there are signs of osteoarthritis etc. I hope you can get some help soon, Daisy! xxxxx
-
Nerve compression could be diagnosed prior to MRI technology ;)
Difficult to control pain and stiffness if various medications cause reactions :o - bugga .......
-
Girls something to report ! Very very early days but something happened tonight - a veil lifted literally from my head - i actually feel 'normal' 😮 I am keeping my promise and will report on thread I started. I can't be sure if CBD is doing something or if it's the combo of supplements?? Or if I've been given a temporary reprieve ;D but boy it feels good 😊
-
It's always good to hear when women feel better for whatever reason :)
Hurdity x
-
Hello DaisyB.
So pleased that you are feeling better. The fact that it is possible to feel good in the midst of menopause madness is a good sign and brings hope to us all.
Take care all.
K.
-
That's wonderful news, Daisy! If it's the CBD oil, then I need some! :) xxxxx
-
Me too Daisy- keep posting please and glad you're feeling a bit better x