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Menopause Matters magazine ISSUE 55 out now. (March 2019)

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Author Topic: It's not working  (Read 598 times)

EnglishRose

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Re: It's not working
« Reply #15 on: January 14, 2019, 12:15:39 AM »

Thanks ladies. Birdy it has comforted me to know that I'm not alone in not responding to the patches at all. I guess I had read when ladies have said they weren't working for them it was side effects or levels not raising enough. But for levels not to move at All?  It did feel like I must be failing especially with the topical cream not working either

 sorry to use that F word. It was aimed only at myself Im just proper down on myself at moment. Chastising myself for not being able to pull myself out of depression this time and be thankful for what I've got  telling myself im stupid, useless, ugly, a let down to everyone.
I have never thought that about anyone else in my life. Just myself. I looked in the mirror this evening and thought "I hate you"

It's hard to get perspective but the replies tonight  have helped. Calm, practical advice and encouragement. Will try to take those thoughts away with me.thank you all so much.xxx

It depends on whether your VA is purely dryness or deeper uterine issues.
I have no dryness nor does it hurt when I have sex but my discharge has been watery for years and peeing too much too and little air bubbles escaping which indicates thinner vagina walls
The dryness will go almost immediately as Vagifem provides lubrication.
But if you hsve bladder and deeper organ irritation then you hsve to understand that itís taken years and years before your va symptoms appeared. We get subtle signs and ignore them but then at some point the lack of Oestrogen to the reproductive organs creates more troubling symptoms and thatís when we seek help.
So years to develop months to treat,
Vagifem website states 3 months before you can expect benefits Iíve known of some ladies using it daily and it took six months
As Hurdity said if your Oestrogen is still low then essentially itís as if youíve not been on HRT at all,
Until your blood serum levels are proven to be normal and or increased then itís common sense to accept the symptoms will be the same,
Iím on HRT and Vagifem 10 weeks
Iím on 4 pumps of Oestrogel which is the highest official dose, Iíve booked blood tests as I feel my Oestrogen is still very low based on symptoms
I wonít expect results until my oestrogen is considerably higher than 400.
It was tested in May and showed <18 ( next to none)
Focus on getting the Oestrogen levels increased then see how your symptoms feel-
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allie007

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Re: It's not working
« Reply #16 on: January 14, 2019, 07:38:35 AM »

EnglishRose....you mentioned that yoy have booked blood tests....have you gone down the private route to do that? My GP won't do any blood tests despite me asking for some to check my levels.
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Tc

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Re: It's not working
« Reply #17 on: January 14, 2019, 10:20:08 AM »

Thanks englishrose. I hadn't realy considered that although I had no probs with dryness whatsoever VA might have still  been starting without symptoms before my surgery. I'm blaming it on the surgery but you say it takes years so I guess after only 5 months it may not just be down to that. It just seemed so sudden.
Can I ask about the level. I find it somewhat confusing.  It seems there is an expected level of E, P fsh etc.post meno but what about post meno on hrt?Is

. You mention 400 is that pg/ml. Mine was measured in pm/ol.

I know my gynae thinks we shouldn't get too caught up in blood tests alone but hey if I felt ok the levels wouldn't realy be relevant to me 

In my case the test backed up my symptoms that I wasn't absorbing the patch so I feel it was important

Just wish it was a little clearer about pg/ml and pm/ol and that there wasn't so much apparent variation when trying to research what the normal range is.

The most confusing thing to me is
 its realy not clear even though I've tried to research it what the goal of Hrt is in post meno.is it to return levels to reproductive years or just to increase them a bit.?

Maybe it's just me whose confused about it. But as I said in my case the blood tests did turn out to be important.
Maybe someone can help us clear up the confusion englishrose.
Thanks for your reply.best wishes.
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Conolly

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Re: It's not working
« Reply #18 on: January 14, 2019, 10:57:48 AM »

Hello Tc,

Hope you're feeling better today.

The conversion of estradiol is 1 pmol/L = 3.671 pg/mL.

I understand that there is no normal levels post-menopause. Without HRT the levels may vary amongst women but will be always lower than during fertile days. The goal of HRT in post-menopause is not to achieve specific hormone levels, but to control symptoms, as the 'optimal' level may vary. Blood tests are important when you're on HRT and your symptoms are not being controlled but the interpretation of levels will be relative to prior results, the absolute numbers are not so important.

Regarding lab normal ranges, it's important to ask for them along with the results, as they may vary between labs.

Conolly X
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CLKD

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Re: It's not working
« Reply #19 on: January 14, 2019, 11:03:15 AM »

Blood tests are reliably un-reliable as hormones rise and fall constantly.  My Gynae works on symptoms.  So does my GP who has been great thus far.

Maybe the HRT isn't working because your body doesn't require it despite your symptoms - clear as mud  :-\

Also the body doesn't get where it is suddenly unless surgical intervention is required so any uptake may take a while. 
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Changes can be scarey, even when we want them!

Tc

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Re: It's not working
« Reply #20 on: January 14, 2019, 12:12:08 PM »

Thanks conolly. That's clearer.
As you say when symptoms aren't controlled as with mine it can be explained if blood test shows low level.

The thing is I have no idea what my level was before surgery. I was symptom free before so obviously my levels were ok for me as an individual. But I don't k ow what they were so I have no yardstick
.
As I understand it the ovaries continue to make very low levels of E and androgens after meno but with no ovaries this is non resistant. Only small amounts frim adrenal glands and fat conversion.

In some ways in surgical meno you are starting with a level playing field without your own hormones interfering so there realy shouldn't be much fluctuation. Except maybe depending of the time of day you administer your hrt i guess.
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Conolly

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Re: It's not working
« Reply #21 on: January 14, 2019, 01:07:13 PM »

Exactly, Tc. It seems that with surgical or early onset menopause HRT is not enough to control symptoms right away when compared to usual menopause. It seems particularly difficult to address hormonal withdrawal anxiety.

I think you are entitled to have blood tests as long as you don't have your symptoms controlled and the amount of oestrogen you're taking is relatively high, so absorption issues can be addressed by changing the administration route or even changing for synthetic versions.

Conolly X
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Ladybt28

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Re: It's not working
« Reply #22 on: January 14, 2019, 01:29:34 PM »

I am in my 6th month of my oestrogel and utro regime and it is only now I realise how things have got any better.  It has been slow and almost imperceptible but over the last month I have noticed the change, Tc.  I have all my "bits" so I would reckon it is going to take quite a long time to balance any levels or symptoms when the body has had such a shock as yours.  From reading posts everyday here for nearly a year, I have noticed that those who have real problems it is rare to find a "quick fix" or get a quick response to treatment.  Symptoms seem to take quite a while to start to shift.

I am on 4 pumps (I know a lady here says the unofficial limit is 6 pumps) and I got to that level quite quickly but there was no miraculous definite time when my ability to function increased, it has just slowly an imperceptibly crept into being "nowhere near as bad as I was and better than last week"!  If I remember rightly you are still only really starting out and especially as it is surgical your timeframe may be longer.  I know I kept thinking "this isn't working, why isn't it working, what extra can I do".  In my case I just had to be patient but it is so hard when you feel so bad and 6 months is a hell of a long time when struggling with everyday life Tc.  I think I have said I have had 5 hrt regimes and in the early stages (although I gave them 3 months each bar 2 which was femeston and everol) I knew they were not right.  I got rid of my flushes quick with the gel and because I never took the utro orally I took the ladies advice here and did it vaginally I never got the progesterone problems I have had before. 

There are posts on the forum that suggest some women need to have testosterone to help synthesize (I don't know if I'm using the right terminology but I'm sure someone like Connolly or Hurdity will set it right  ;)) the oestogen for it to do its job properly and even in women "with bits" that dont chuck it out in the right amounts, they do at least have a tiny amount.  Without your bits I believe you dont have any?  - like I said I am sure our "guru's" will be able to comment.
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Joaniepat

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Re: It's not working
« Reply #23 on: January 14, 2019, 06:43:17 PM »

If it's of any help, here is what I'm aiming for.

I had a TAH-BSO in 1997. I took oestrogen (Premarin as far as I recall) and all was well until about 2003 when my new GP refused to prescribe it because she was spooked by the flawed millennial studies. I was about 53/54 then, and eventually things started to go downhill, mainly with joint pain, but other things as well. I developed (or should I say, became aware of) VA a couple of years ago. I was interested in restarting systemic HRT to help with the VA and also to prevent osteoporosis, which my mother had. I was refused initially because of my age, which was 67 then. However, I was eventually given Tibolone, and also got a referral to the Chelsea & Westminster menopause clinic. They ditched the Tibolone and gave me Oestrogel and Vagifem, and also ordered a Dexascan which revealed osteopaenia.

On 2 pumps of Oestrogel I achieved only 89pmol/l, and on 3 pumps still <100 pmol/l. I was switched to Sandrena, 2 x 1mg sachets per day and had a slight improvement reaching 140 pmol. What I am aiming for is 200-250 pmol/l to prevent osteoporosis. It is also thought that if I can get my oestradiol levels beyond subtherapeutic, this will improve the VA. I am now using 125 mcg Estradot patches, and will get another hormone profile done in April.

My local oestrogen regime is the Estring plus daily Vagifem. I would like to add Ovestin for external use, but it usually makes me itch and last time I used it I had an allergic reaction of itching and swelling. So that one's on the back burner for the moment.

Since I have been back on systemic oestrogen, my joints have improved a lot. Mood is also generally better, with little anxiety these days, and sleep is much improved. Stamina is up and down. VA still bothersome, although better than it was. The urinary side of things is better but not perfect. Vulva still sore although I do have a few good days now.

At some stage testosterone was added to the mix, but it is hard to say how much difference this has made. It was prescribed to improve stamina.

So TC, I guess it's all a question of finding the right regime. I will have fingers and everything else crossed for you and hope your new one gives the desired results!

JP x
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Ladybt28

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Re: It's not working
« Reply #24 on: January 14, 2019, 06:52:17 PM »

Hi Joaniepat I find it interesting that Chelsea and Westminster clinic do bloods.  No one here ever does any they just go off of symptoms. I am very luck because I don't have any VA at all.  Possibly because I started hrt early in peri, don't know if that makes a difference to it developing? My testosterone prescription is due to be issued in the next couple of days and I wonder how much difference it will make. I trying to not to pin too many hopes on it, in case I am disappointed.

I am really glad to hear you are finally getting your gel Tc! :)
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Tc

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Re: It's not working
« Reply #25 on: January 14, 2019, 07:59:37 PM »

Well. What amazing replies. Thank you ladies.
Conolly thank you for your  well thought out practical advice.
Ladybt28 glad your feeling better and..
 
To both of you ladies thank you for your thoughts on surgical meno.

I sometimes feel as though by saying I'm in surgical meno people might think I'm trying to set mysekff apart
 I am soo not. The symptoms are the same...but.
Surgical meno is different, not worse or better, just different and thank you so much for acknowledging that. Which leads me to
Joaniepat. Thank you so much for sharing  your story. Resonates with me cos of the surgery and also the ostio which every woman in my family seems to have.

I must admit my immediate symptoms have been so overwhelming and sudden that I have found it hard to think about the long term effects of surgical meno.

But i have seen it in my family mum and both her sisters after having everything removed in their 30's and early 40's.  Having said that  my nan never had a  op in her life but the ostio kicked in her 50's.

I had to turn mobile off today but came home to these wonderful replies.xx


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CLKD

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Re: It's not working
« Reply #26 on: January 14, 2019, 08:33:36 PM »

Surgical meno is sudden.  Shocking for the body as usually oestrogen levels drop over a few years. 
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Changes can be scarey, even when we want them!
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