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Author Topic: Don't know what to do, I am Terrified!  (Read 2503 times)

jefner

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Don't know what to do, I am Terrified!
« on: August 21, 2019, 04:47:24 PM »

I started on the Evorel Conti at the end of 2016 being 54 and post meno 3yrs.  Was dealing with other issues so don't give my hrt any further attention until March of this year. 

From old blood tests my specialist moved me onto gel and continuous 100 Utrogestan (inserted) in March due to not apparently absorbing properly.  She started me on 4 pumps but I felt so very ill with it that she thinks I had an estrogen overload so cut back to starting at 2.  Experienced what I believe were side effects from the Utrogestan ie. loose stools, cramping, bloating, fatigue, dizziness, brain fog, nausea, additional anxiety to what I already suffer with. 

Tested in June to see what my levels were which were around 172 and which she wanted me on around 300 to be at the "therapeutic" level. She increased me to 3 pumps in July. 

  Couple of weeks after increasing to 3 pumps  I noticed more side effects, some weight gain, some bloating around the tummy and a little cramping  on my legs which can feel tight in the evenings and actually look thicker and feel quite solid, also my flat chest sprouted and I could actually fit into a bra again and were also sore and firm. 

At the end of July I started to spot, only a very light pink with slight cramping but I put this down to missing the odd Utrogestan which she told me not to. Still feeling no benefits two days after we had that hottest day of the year I went down very dramatically, debilitating anxiety, palps, brain fog, fatigue, dizzy, depressed to the point of suicidal.  My specialist said that because of my history of anxiety I was just fueling everything by my overthinking which might partly be true but I know how my body feels and I don't think this progesterone is doing me any good. 

The spotting stopped and I was back on track with taking the Utrogestan every day again, but still feeling rubbish for most of the time and have been barely able to function let alone get any exercise; just sitting around the house, alone, and just trying to get through each day without topping myself.  My anxiety has worsened and it also hasn't help my agoraphobia issues.

Bleeding stopped but out of the blue started again  on the 13th of this month but it wasn't the pale pink showing but red this time, only enough to wear to small panty liners.  I am getting all the pmt symptoms and cramping and the bleeding has gradually worsened the last two days to the point of passing some small clots and stringy bits, it's almost like the periods I used to experience, but I have been bleeding now for 8 days and there doesn't seem to be any signs of it stopping; the last two days I seem to be passing more and the cramping is every day.   I seem to pass more in the mornings and throughout the day and it eases off at night along with some of my mental anxiety and other symptoms.  I just can't help but feel that it's the Utrogestan doing it.  Each time I get the cramping I know I am going to get a sudden flow or clot.  By evening, especially late evening I generally feel so much better mentally and physically and I try to go out for short walks to at least get some exercise.

I discussed the now bleed with my specialist a few days ago and she said it was important to stop the bleed and recommended I either up to 200mg vaginally or better still take 100mg orally which I refused because of my gut issues and it works better vaginally with minimal side effects anyway I am informed.  She then mentioned I may experience more side effects which I just cannot cope with. 

I noticed a couple of weeks after upping my dose to 3 pumps that I started to deteriorate experiencing more side effects which i was surprised at because I have been on it since the beginning of March (in effect nearly 6 months). . 

I don't have the strength mentally or physically to go on with this anymore.  I think I am just one of the unlucky ladies that does not tolerate progesterone and to be honest I cannot take anymore of this  living hell because I felt so depressed and suicidal at one point, I cannot deal with any more side effects nor do I feel strong enough to try other methods

Yesterday and today the bleeding has been a little worse with some clotting and whereas I was managing with say two small panty liners a day, I feel the need to wear a larger pad.  Any bleeding/cramping alike I  have seems to be more prominent in the mornings and afternoon and eases off in the evenings along with some of my symptoms.

I think I am just one of the unlucky ladies as regards not being able to tolerate the progesterone.  Would you agree and might the bleeding be consistent with changing my dose again a few days ago?

I am now scared of progesterone withdrawal.  She said if I wanted to come of it to cut down by one pump a week  and then completely stop everything which I find far too quick and would surely send my system into shock.  I suggested I  want to wean off the hrt (the way she suggested), but in order to  minimise any withdrawal from the progesterone  I would like to move back on to the Evorel Conti patch so at least I am still getting a little of each, as I wasn't absorbing the full dose from the patch anyway) and then wean off that slowly. 

I am so tempted not to take a Utrogestan tonight to see what happens in the morning.  I feel sure it's causing me the most issues.

I am in such a state right now, I can't think straight and have no idea whether whatever I have written makes any sense.  I need your help and advice please ladies
« Last Edit: August 21, 2019, 05:09:06 PM by jefner »
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juliemargaret

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Re: Don't know what to do, I am scared!
« Reply #1 on: August 21, 2019, 05:03:49 PM »

Hi Jefner....god bless you....i feel you as i feel the same (you can read my posts of this morn (6 days off progesterone) and the helpful responses from.the other diamonds (women!). Im.sorry i cant advise as im a newbie.....BUT.i am certain that somebody with more know will reply soon. Pls try not to be scared.......we.will all support one another best as we can. X

« Last Edit: August 21, 2019, 05:29:55 PM by Jmargaret »
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kayellvee

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Re: Don't know what to do, I am Terrified!
« Reply #2 on: August 21, 2019, 05:49:51 PM »

Like Margaret, I'm new to all this and can't advise but just wanted to offer some support and love - I'm sorry you're having such difficulty and as a fellow agoraphobe I know how hard the anxiety is.  You know your own body best and although anxiety is probably playing a part, it's not necessarily just that, it could well be the hormones too. 

I was coping fine until BAM beginning of July I just wasn't any more and yes, a lot of my issues are anxiety-based but the anxiety is incredibly heightened right now and I don't think it's "just anxiety".  I hope someone on here can give you some more practical advice but in the meantime, have a  :bighug:
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CLKD

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Re: Don't know what to do, I am Terrified!
« Reply #3 on: August 21, 2019, 07:01:09 PM »

Nothing is 'just' or 'only' there is always a reason!

Many women cannot tolerate progesterone.

....... and breath!  Hopefully someone will be along but put 'progesterone withdrawal' into the search box to see what pops up.
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jefner

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Re: Don't know what to do, I am Terrified!
« Reply #4 on: August 21, 2019, 10:02:43 PM »

Hi Jefner, sorry you are having a nightmare with this. I was too and I feel soooo much better since I quit hrt.

Obviously, we are all so individual that it is hard to say what would be best for your individual needs. I just knew, without doubt that it caused several hideous symptoms that I was not prepared to put up with. Why would I?!

My gut feeling is telling me, if ,when you were 54, you were already 3 years post meno, then by now, your natural menopause may well have passed or settled, which might be why, by adding these hormones, you are getting all these horrible symptoms?! 

I came off it overnight, but was only then taking 1 pump and 7 day utrogestan. Can't remember, but if you're taking utrogestan every day, that is surely causing you all the bleeding. I didn't bleed at all when I took it.

Go with your gut feeling, what you think feels right for you?! X

My gut feeling is telling me it's the progesterone although I wasn't doing that bad on it for the first 4 months and with that in mind, could it in fact be the progesterone, I just don't know any more.   How long were you on yours before you decided to come off it and were you post or peri meno as I read that you only on a 7 day utrogestan regime?
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jefner

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Re: Don't know what to do, I am Terrified!
« Reply #5 on: August 21, 2019, 10:16:34 PM »

was hoping for a few more replies as I feel so desperate, from ladies who must have been in the same position as me.  Please, there must be someone who can advise
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Hurdity

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Re: Don't know what to do, I am Terrified!
« Reply #6 on: August 22, 2019, 07:48:23 AM »

Hi jefner

So sorry to hear about your issues and side effects. The main thing is that overall - most of the time - HRT should make you feel better not worse! Also that blood tests are completely unreliable and under normal circumstances docs shold be not be doing them to test for oestrogen levels! There is nothing wrong with a level of 172 pmol/l. Also depends where in your patch change cycle the blood tests were done. Mine were 90+ on 62.5 mcg but I was due to change my patch and I feel fine on that dose. After patch change they would be higher.

Can you say how you felt on the Evorel conti - did you feel OK on this product?  What were the menopausal symptoms you were experiencing that led you to start HRT? Were your flushes and sweats controlled? Perhaps you don't/didn't get flushes and sweats? If you take other medication (eg ADs) this might mask them. The recurrence of flushes and sweats and a good signal as to whether the dose is sufficient - otherwise you have to gauge how you feel over a period of time.

It does sound like you could be progesterone sensitive/intolerant. Did you feel like that on the Evorel conti? If you felt fine on Evorel conti then why not go back to that (if it's available - but that's another issue) or something similar? Another alternative if continuous combined HRT does not suit you is to go for a cyclical HRT - that way you only experience the dreaded prog for part of the month. You still have to adjust to the progestogen and then withdrawal though - just like with a normal period, and you would most likely bleed monthly although maybe not much if your levels are low. At least you would know when the bleed was coming - hopefully.

In contrast to Jari I am mid 60's and have been happily on HRT for 12 + years - patches and utrogestan taken vaginally on a long cycle (with doc approval), with almost no problems.

Hope you manage to sort out what to do to feel better - but do ask further questions and we can try to help!

Hurdity x
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jefner

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Re: Don't know what to do, I am Terrified!
« Reply #7 on: August 22, 2019, 12:16:32 PM »



Hi Hurdity

Thanks for responding.  I can't say I experienced any side effects on the Evorel Conti that I am experiencing now on the gel and especially the Utrogestan.  I feel sure it's the utrogestan causing me the most issues, ie. worsening of my anxiety to the point of not being able to function.  Initially when starting it back in March I didn't feel I was having much in the way with issues with it.  I increased to 3 pumps from 2 after a blood test and then a couple of weeks after that I noticed more symptoms, ie. bloating, cramping, brain fog, fatigue, more anxiety, sore boobs which have increased in size and I have been suffering since.  Then the bleed which started 8 days ago and is still going and the amount I am losing seems to be increasing by the day to the point that I feel I am now having a full blown period with the cramping and small clots. 

My meno specialist says my current bleeding suggests there is not enough progesterone being absorbed and is probably linked to the increase in dose of my oestrogel to 3 squirts which I started mid June (started to bleed end July). 

I started on the Evorel Conti patch 2yrs ago because I thought it might help something but at the time I had other issues as well so I don't really know what symptoms I was having, apart from flushes, if any others as some of my conditions show the same symptoms and it's difficult to pinpoint them to anything definite. I did notice though within a week of starting the patch that my flushes went.  I never monitored things with the meno though at that time because I was dealing with my Hashimoto's thyroid condition and gut issues that a Functional Practitioner was helping me with so I thought if I changed too much at once I wouldn't know what was and wasn't working so I just stayed on the patch until March this year when I approached my specialist again and she confirmed from an old blood test I had done 6 months after I started the patch that I wasn't absorbing properly which is when she moved me to the gel and utrogestan.

I can't say I felt fine on the Evorel Conti, only that it didn't give me any of the symptoms and side effects that I am experiencing now on the gel and utrogestan.  My anxiety has been severe for the last 4yrs now since my body suddenly crashed and I my thyroid went over active and then I found out I had Hashimoto's.

I wanted to experiment last night with the Utrogestan and purposely missed it to see how I felt this morning and I don't feel as bad.  That is the reason I missed the odd one several weeks ago and the same thing happened, I didn't feel as bad the next morning but I clearly had to take it so went back to daily routine and have suffered the side effects since.   

I now feel sure it's the Utrogestan so I want to get off it as soon as possible but I am terrified of the withdrawal symptoms because of how ill I am feeling anyway, suicidal some days.  I have suggested to my specialist I wanted to get off this regime.  It's only been 5 months but I can't take it any more.  Instead of just down dosing on the estrogel and then stopping everthing as she has suggested I thought it better to wean off more gently so to avoid any withdrawal by going back to the Evorel Conti.  As I wasn't absorbing enough,maybe start on 1.5 patches to take account of my current levels.  That way I am still getting some progesterone but not the troublesome Utrogestan and then slowly wean off the patch so I am off it completely.  I worked out I am 6yrs post meno now and may not need it.  If the flushes come back I don't mind those. 

But I cannot go on the way I am currently because I am barely existing, it's a fight to get through every day with all the symptoms which I thought would have levelled off by now but just seem to have gotten worse.  Plus I am now worried about the bleeding because there is no signs of it stopping and today, as it's more of a proper flow period with cramping, and I am now having to wear full protection rather than just a couple of small panty liners.

As I said earlier she seems to think the 1 pump increase might have started the bleed but I went back to 2 pumps a week ago.  I had no bleeding on 2 pumps.  How long does it take for things to readjust do you think with the bleeding hopefully stopping as I moved down to 2 pumps a week ago.

I am frightened now and just don't know how to get things back to where they were where I can just about tolerate life.  for the last 4 weeks it's been a living hell and I just want to end it as I see no positives in sight.

Just very frightened and totally alone with all this as I have no friends to turn to or support, only on here

« Last Edit: August 22, 2019, 12:20:32 PM by jefner »
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jefner

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Re: Don't know what to do, I am Terrified!
« Reply #8 on: August 22, 2019, 12:31:49 PM »

Hi Jefner, I hope you're feeling better a bit this morning.
Try to relax a bit, you will sort this out one way or another!

I was 13 months post meno when I started to take it. I only took it for 2 months and came off it overnight, because of the anxiety breathing problem that it caused me. X

Hi Jari

I experimented last night and purposely missed a Utrogestan and don't feel quite as bad today so I feel sure it doesn't suit me but i am terrified of just stopping it because of the withdrawal so trying to move back to the patch which I didn't absorb well from, but at least it will give me a little progesterone and a lower dose.  I missed the odd one before I noticed the same in that I didn't feel quite so bad next day but my specialist said I had to have it continuously so went back  on it daily.  Am still scared of all this bleeding though because it's not easing
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Hurdity

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Re: Don't know what to do, I am Terrified!
« Reply #9 on: August 23, 2019, 07:29:13 AM »

jefner you might need to adjust your thyroid meds - ask the docs for (thyroid function) blood tests as levels can be affected by menopause/HRT although I did read that only oral oestrogen affected this? Worth asking anyway. Maybe try Evorel sequi if conti was more or less OK? You would get a withdrawal bleed but at least you would know if you felt oK on the oestrogen only part once you'd had your bleed? Really don't get sidetracked by blood tests for oestrogen. It's how you feel that's most impt! Good luck!

Hurdity x
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jefner

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Re: Don't know what to do, I am Terrified!
« Reply #10 on: August 23, 2019, 10:27:03 AM »

jefner you might need to adjust your thyroid meds - ask the docs for (thyroid function) blood tests as levels can be affected by menopause/HRT although I did read that only oral oestrogen affected this? Worth asking anyway. Maybe try Evorel sequi if conti was more or less OK? You would get a withdrawal bleed but at least you would know if you felt oK on the oestrogen only part once you'd had your bleed? Really don't get sidetracked by blood tests for oestrogen. It's how you feel that's most impt! Good luck!

Hurdity x

Hi Hurdity

I had my thyroid tested recently as I test frequently anyway.  I am post meno so don't want the periods back which I think I will get with the Sequi and my specialist said I had to have the progesterone to protect my insides.  I missed another Utrogestan last night and am feeling bad about doing that again because I could have messed things up even more.  Yesterday the bleeding was heavier with some clotting but today it has eased off a bit but the anxiety and dizziness and the feeling of going mad is still there. 

If I wanted to come off it my meno specialist told me to decrease by one pump per week and then stop completely but I feel it's too quick and I should wean off slower but I cannot stay on the Utrogestan a day longer than necessary and if I stop it I am absolutely terrified of the withdrawal from it as I already feel so ill on it. 

As I was originally on the Evorel Conti patch I was thinking of moving back onto it say 1 1/4 or 1 1/2 patch to try and tie in with my current levels so it's not too much of a shock to my system in dosage drop and I am still getting some progesterone.  I was on it for two years but wasn't absorbing properly hence moving over to the gel in March. 

How soon could I move over to it do you think?  Will I still experience the withdrawal side effects from the Utrogestan?  I have managed to source a box and they are holding it for me at the chemist

« Last Edit: August 23, 2019, 10:34:48 AM by jefner »
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