Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tc on January 13, 2019, 08:06:42 PM
-
Hiya.
Almost 3 weeks on estriol 0.01 now continously. Inside and out at night.
Its just not working. Very slight improvement bladder wise but still very dry at entrance and just inside. Lack of sensation and feeling of inflexibility even inserting the applicator
Shouldn't it be working by now?
I've only been in surmeno for 5 months how can VA ihave got that severe that quick. I thought being on patches would at least mean if VA developed it wouldn't be as severe. But.
.
After 4 months on patches test showed my E is as low as it would be without any treatment gutted!! Wasted 4 months.
Ive not absorbed the E from my patches. The P has made me I'll and I had such high hopes for this topical treatment but it seems I've failed at that as well.
I feel like a failure and I hate my body right now.
I hope and pray it gets better than this. Surely my body has to respond to something eventually.
Any advice 're the estriol cream? Does it just not work for some.?
Do I need to keep taking it continously for longer?. .
Thanks for any advice ladies.
-
Vaginal atrophy is different to other problems and requires specific treatment. I find Ovestin eases symptoms and many use Vagifem with success. Have you tried two doses up there every other night? Sometimes there isn't enough in the product itself to help.
-
The trick is to keep the whole vaginal area as supple as possible, treating with 'yes' or 'sylc' products as well as your vaginal application of choice. So putting moisturiser around the outer lips several times a day, drinking plenty to ease any bladder niggles; some find adding bicarb of soda to a glass of water helps that. Taking a pain relief tablet can also ease bladder feelings [at least 3 times a day until that eases.
Vagifem was initially made in 25 ? doses, now it's as low as 10 ...... which is why some find they need nightly use.
-
You're not a failure, Tc, and so I don't like hearing you use that word. No failures here. Just ladies doing our best to wade through the shit show of the menopause.
-
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
-
Thanks birdy. When you said hang on in there love it will get better I felt so comforted i realised it's what I've been lacking someone to put their arm around me and say it's gonna be okay it's what my wife would've done. Unlike others in my life she never went in for the tough love approach when I was down. Just the love love approach.god how I miss her.
-
Thank you so much. I've just made a cuppa and will go to bed with your words of comfort. Love what you said about a soft place to land. So true..
Sometimes that hug and it'll be ok is realy what's needed most. I don't have that physically but I do feel as though I have tonight through you
It realy means so much.xxx
-
Tc, perhaps you need different products? I didn't absorb enough oestrogen from the gels, so have been switched to patches. It seems you just don't absorb very well from the patches so need to try something else. Also, as I think I might have said on another thread, you may do better with Vagifem and Ovestin for the VA. Is there any chance you could change to different products? I'm sure you'll feel better all round once you can find the right regime. Not easy I know.
Take care,
JP x
-
Thanks JP. I will ask my doc about vagifem. My gp has been a nightmare with the hrt thing. They wouldn't even prescribe the estriol without gynae letter.
They also then only gave me tube to last 2 weeks which it clearly doesn't. I had to go back and ask for another tube.
Their attitude is certainly not helping the stress of trying to sort symptoms out
I'm picking up scrip for gel and utrogestan tomorrow. So here's hoping.
I read on another thread that sometimes ladies in early or surgical meno can react differently to some hrt. At 53 you could hardly call mine early but I terms of where I was b4 on the meno scale I'm not sure I was even properly into peri as I had no symptoms.
Best wishes to you. I have to just hope for the best on the new regime and try to not be negative.
-
If you get the vagifem insert only halfway up and towards tummy, that should help in and out
Really hope the gel works for you, I can tolerate higher doses of gel much better than i could moderate dose of patches x
-
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 it's 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 that's when we seek help.
So years to develop months to treat,
Vagifem website states 3 months before you can expect benefits I've known of some ladies using it daily and it took six months
As Hurdity said if your Oestrogen is still low then essentially it's as if you've not been on HRT at all,
Until your blood serum levels are proven to be normal and or increased then it's common sense to accept the symptoms will be the same,
I'm on HRT and Vagifem 10 weeks
I'm on 4 pumps of Oestrogel which is the highest official dose, I've booked blood tests as I feel my Oestrogen is still very low based on symptoms
I won't 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-
-
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.
-
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.
-
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
-
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.
-
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.
-
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
-
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.
-
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
-
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! :)
-
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
-
Surgical meno is sudden. Shocking for the body as usually oestrogen levels drop over a few years.