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Author Topic: The Road Less Travelled  (Read 78962 times)

Butterfly22

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Re: The Road Less Travelled
« Reply #225 on: May 22, 2017, 06:32:41 PM »

Yes that's it, there was a thread on here a lady tried it said its given her life back.
I've read mixed reviews but may be worth a try xx
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Tempest

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Re: The Road Less Travelled
« Reply #226 on: May 22, 2017, 06:33:37 PM »

Thank you so much, girls! If I could clone him, I would! He says it doesn't matter why a person is in distress or what the treatment needed is - be it HRT, talk therapy, AD's, psychotropics etc - each of his patient's is different and his job is to offer empathy and support and to ease suffering however he can. ALL of his patients love him (his clinic always runs late because he spends so much time with each patient, but none of us mind waiting)!

Dear Annie! Gosh - I think, just think you might be hitting estrogen deficiency. When I discussed Tibolone with Prof. Lumsden, she thinks this is what happened when I was on it (I hit it pretty fast as I had only been faffing with ERT, but must have had some store - it's taken until now to truly hit the bottom of the jar). She also said Tibolone can be a bit unpredictable - could it be be as your E is very low with dissolved ovaries, that it's now purely converting to E do you think, but not enough?

Are you also still aching badly all over? I've got the aching toes, soles of feet, neck and shoulders, hips etc.

Would you consider going back on the patch only, say at 25 and titrating to 50? It may just be enough, and you could avoid the jittery nastiness hopefully! And - I highly recommend talking to Diane, she gives great advice on troubleshooting if she can. She's giving me another wee call tomorrow morning.

Sending you biggest hugs - WHY CAN'T HRT BE STRAIGHTFORWARD!!! AAAAAARRRGGHH!!!!! xxxxx
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Butterfly22

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Re: The Road Less Travelled
« Reply #227 on: May 22, 2017, 06:40:11 PM »

He sounds amazing I knew a lady gynocoligst like this but she retired.

Annie I've put comment on thread so at the top again xx
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Tempest

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Re: The Road Less Travelled
« Reply #228 on: May 22, 2017, 06:50:15 PM »

I think I may have had 3 meno's actually, without wanting to sound dramatic. :o

I had about 6 months post hysterectomy when I had severe sweats etc., but it was never acknowledged. The sweats resolved, and I never felt right afterwards but was on a serious amount of morphine for a few years 18 months after my hysterectomy after a subsequent spinal surgery, so was probably too zonked to notice the full effects. I think the blood supply to my ovaries was disrupted at that time. In 2012/13, all hell broke loose and I started Peri proper - GP refused to acknowledge it and I was quite a way through and I THINK menopausal or coming close
to post when I had the oopherectomy. Now I'm stuck with this bo##ocks........

My psych said today, no wonder you've had enough! :o xxxxx
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Butterfly22

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Re: The Road Less Travelled
« Reply #229 on: May 22, 2017, 06:56:04 PM »

I think I may have had 3 meno's actually, without wanting to sound dramatic. :o

I had about 6 months post hysterectomy when I had severe sweats etc., but it was never acknowledged. The sweats resolved, and I never felt right afterwards but was on a serious amount of morphine for a few years 18 months after my hysterectomy after a subsequent spinal surgery, so was probably too zonked to notice the full effects. I think the blood supply to my ovaries was disrupted at that time. In 2012/13, all hell broke loose and I started Peri proper - GP refused to acknowledge it and I was quite a way through and I THINK menopausal or coming close
to post when I had the oopherectomy. Now I'm stuck with this bo##ocks........

My psych said today, no wonder you've had enough! :o xxxxx



Eeee that's awful, I've never heard of this, one is bad enough. It's good you have good support as I think that's half the battle. I've never talked to others who also have a nightmare withHRT although it's awful it's good to no your not alone.
I get really down about it as feel like hormones have ruined my life along with ME and depression.
Wish I had a magic pill to give you all 😢
But least your not alone sending hugs, we will get there in the end xxxxx
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Annie0710

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Re: The Road Less Travelled
« Reply #230 on: May 22, 2017, 06:57:29 PM »

lil I'm on b12 deficiency and pernicious anaemia group - pat Kornic etc

Tempest yes I ache bad, stiff joints, dry mouth comes on just after lunchtime each day, palpitations /anxiety (I don't know what's what right now between the 2)

Sinus pain /headaches each day, stupid ear thing, night sweats, doom and gloom (since Friday properly)

I'm a walking disaster lol right now x
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Butterfly22

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Re: The Road Less Travelled
« Reply #231 on: May 22, 2017, 07:01:36 PM »

Ah yes that's the group I'm in to :) xx
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Tempest

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Re: The Road Less Travelled
« Reply #232 on: May 22, 2017, 07:19:58 PM »

Oh goodness! I hate to be the bearer of bad tidings, Annie - but that sounds EXACTLY like very low E. I have the same. It's amazing how it takes time to get there, but it does!

So - how do we get you fixed again? Do you fancy a chat with Diane? She's so good as she's an oopherectomy lady - she knows how s##tty it gets with no ovaries (and she has great contacts).

Like me, I reckon your ideal regime would be 75mcg patch (or gel equiv), 100 mg Utro. bi-nightly and a daily pea of T. This is what Diane was prescribed privately by Nick Panay and she's full of vim and vigour! If only the blinkin' NHS  was flexible in prescribing this to ladies without a womb or ovaries, but oh no! They are completely stifled by their own guidelines.......Hence why I am on a quest to get PROPER treatment privately (am just waiting to hear back from Kathy Abernethy too). xxxxx
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Annie0710

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Re: The Road Less Travelled
« Reply #233 on: May 22, 2017, 07:40:49 PM »

I'm getting soooo confused Tempest! Are you on that regime right now ? Or soon to be on it ?

I don't think my gp surgery would agree to utrogestan because of no uterus xxx
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Tempest

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Re: The Road Less Travelled
« Reply #234 on: May 22, 2017, 07:55:38 PM »

Oh bless you! No - I'm not on ANYTHING right now, and suffering pretty badly it has to be said! I'm going to see GP tomorrow who I expect not to agree to this is any way, so the plan I worked out with my psychiatrist (comes to something when you're working it out with your shrink) is to 'hold' on a low dose of Estrogel which he has asked my GP to ensure I get UNTIL i'm able to access appropriate treatment via the private sector.

We're being totally open about me being forced to go privately - he explained this in his call to the GP today. It's tough if they don't like it as far as I'm concerned, but who knows if I'll pull all of this off? It's tough being stuck in Scotland, or else I'd have no hesitation in consulting Nick Panay - he insists on face to face consultations and whilst I do have some finances to throw at this as my last hope, I don't have enough to fly to London back and forth for reviews etc.

I could end up just stuck on a measly pump of Estrogel after all this if nothing pans out - I'm trying to prepare myself for that. Luckily I have my Psychiatrist who is supporting me along the way as we had a very deep conversation about what would happen if I fail to get this treatment or if indeed it doesn't work. I guess we'll cross that bridge when we get to it, but there's a mountain to try to climb before that.

P.S. Should get DEXA result tomorrow. Dreading it! :o xxxxx
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Annie0710

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Re: The Road Less Travelled
« Reply #235 on: May 22, 2017, 08:01:24 PM »

Aw I hope it's good news.  I always have my legs crossed but I'll cross my fingers too for you

I'm up and down mood-wise, literally..... I can be dandy one minute and then boom then back up again for ten mins.....bizarre goings on

Saturday night I woke up in bed just as a night sweat started, I've always woken at the end of one before.  It was weird, chest red hot and I could feel the beads of sweat emerging
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Tempest

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Re: The Road Less Travelled
« Reply #236 on: May 22, 2017, 08:25:37 PM »

Thank you, Annie! :thankyou:


Ugh - it's gross, isn't it? I really thought my body had no further surprises, but the further I am now from surgery, the worse it is for me! I had heard that for some, years 2 - 3 post surgery are worse and then it can improve but I don't like the deficiency symptoms at my age - it's all been too drastic so I'll need to try to do something for a few more years (if I can even get anything to work)!  :o

Do you ever get 'the dreads' before or after a night sweat? I get one at 6am every flippin' morning, and it's pretty horrendous! I'm so sorry you're getting the mood swings too, dear heart - I've never heard you suffering from these until now since peri. None of this is bl##dy fair, is it? >:( xxxxx
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Annie0710

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Re: The Road Less Travelled
« Reply #237 on: May 22, 2017, 08:32:53 PM »

I've had lows since all this meno rubbish started.  I've left it though hoping it'll go away and mind over matter etc and it always has gone.  I've had a really worrying time over my eldest lately and she's leaned on me emotionally and I've helped her all I can, I've been worried sick about her to be honest but she's getting better and I'm now flat !!!! Pleased as punch for her and it's the right way round in my mind that she gets better before me (she had a reaction to a medication she was given) but my mood is literally changing every 10 mins ! To high/low/mediocre/fighting/giving up etc.    It's bizarre ! Xx
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edelweiss

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Re: The Road Less Travelled
« Reply #238 on: May 22, 2017, 08:35:42 PM »

Same here Annie. I was best I've been today. Now lower than a worm's belly tonight. xxx
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Tempest

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Re: The Road Less Travelled
« Reply #239 on: May 22, 2017, 08:41:10 PM »

Oh, Annie! I'm so glad your lovely daughter is feeling better. You deserve better days too! When I started on the Tibolone, things seemed fine but went awry well into pack 2 and I ended up all over the place too (I thought - hey, what's new for me)!

I''ll never know what happened exactly with the Tibolone, but I definitely feel it was just too unpredictable and probably too weak for me without ovaries. I think you can probably get away with it at the average age of post meno., but it might just not be enough for us right now (we're both young and ovary-less after all)! xxxxx
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