Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[racjen]

I've been on here for a while, but given that I seem to be hitting a complete brick wall with medical professionals and getting worse rather than better I'm posting my long miserable story again, in case anyone has any idea what else I can do.

I had chemotherapy for breast cancer (triple negative so not hormone driven) in 2016; at that point I was 50 but still having reasonably regular periods, but the chemo brought on an immediate menopause. After about 6 months this resulted in rapidly worsening depression as my estrogen stores dropped to almost zero. High doses of estrogen gradually got this up to around 1000pmol and my depression improved a lot; however, when I started utrogestan (after about 3 or 4 months) I immediately developed crippling anxiety, always first thing in the morning and tailing off around lunchtime. Changing to a different progesterone made no difference, neither has the more recent suggestion from consultant of taking 3 months off it altogether. It has got worse and worse, every single morning and now becoming more generalised(which I think is a learned response as it's become my body's default setting).

I was also prescribed  testosterone, but this seems to make me depressed although for the first few days I felt a lot better on it. I seem to have a big problem with sensitivity to drugs of all sorts - have tried 8 or 9 different types of AD, propranolol, pregabalin - all of them result in much worse depression (and I mean the suicide plan kind of depression). So I can't even get symptomatic relief - there just seems to be no way out.

Despite the fact that I never ever suffered from anxiety of this type before peri-menopause, I've now been told, by both a psychiatrist and the consultant at Poole Menopause Clinic, that I have an underlying anxiety disorder which has been exascerbated by hormonal issues. The implication being it's basically a mental health issue. From my own experience and from reading all of your experiences I know that this is not the case, but I just don't know what to do now - the Menopause Clinic have written me off (and to be frank I wouldn't want to go back there anyway, I've lost confidence in this guy completely).

My choices now appear to be - stay on the high dose of estrogen and cyclical utrogestan I was on before and try to tough it out, but I have no life left, lost my job and have no desire to socialise so this feels pretty grim. Stop all HRT and just see what happens - this one is scary because I know that I need estrogen to not feel depressed, or something else I have no idea is out there right now. Please help someone, I have two daughters and I'm seriously worried that I won't be able to resist the suicidal urges if this goes on much longer.

[Karen max]

Hi Racjen
Sorry I can't offer you no help as I'm in same boat regarding the anxiety never in my life did I suffer anxiety until afull yr after my periods stopped ( so really that means my anxiety started right at the start of post menopause)

Anxiety is the worse side effect of menopause for me , I'm 51 yrs old post menopause last 4 yrs and anxiety is awful ..
 Plus I'm using hrt patch at minute waiting on appointment to attend hrt clinic st the minute ..

Someone will be along soon to help you out more than I can but just wanted to send you a hug 🤗

Kaz x

[Ladybt28]

Hi Racjen - me again  - please don't feel my post is sharp or there are too many questions  - it is just the way I analyse things (I have to analyse things for my job to provide solutions and I break things into chunks  ) and it will probably help the other ladies too who would want know so they can suggest stuff.  You need to be specific.

"high doses of oestrogen" - what did you take and for how long?
Utrogesten - how were you taking it?  When you changed - which progesterone did you change to?

In the timeframe at what point was the testosterone introduced? What was prescribed and what dose?

Comment = Lots of us are aware of the suicidal depression associated with meno and if you never had it before meno I think it unlikely to be underlying problem that you have always had but defo to do with meno.

Forget choices at the moment - the info above needs considered.  Do you have the time or the patience today to tell us?  Don't worry if you don't.  We will all still here when you do!  Once we have the what and when, then we could move on to "how did you feel at each point"!  XXX

[Shadyglade]

Racjen this is a bit of a shot in the dark but could you be experiencing chronic fatigue, or something similar. What with your cancer diagnosis and treatment your mind and body must be exhausted.

I am sure hormones will play a part in what you feel but it's not always the full story.

[Conolly]

Hello ladies,

I was wondering the same, Shadyglade, maybe even PTSD.

Conolly X

[Perinowpost]

Hi Racjen we've spoken before, sorry you're still not feeling any better. Have you considered reducing your oestrogen, I ask because high doses always make me feel worse and optimum dose (for me) seems to be (evorel) 50. I know you may not feel like it, but it would be a very easy thing tying try and you could see pretty quickly if you felt better on a lower dose.

This would also mean you could take less progesterone (this is the one I struggle with). I take it 100 for only 7 days and find this manageable (I.e., I only get a few bad days withdrawal).

Finally testosterone, I too found high doses made me depressed. However, by taking just 3 petit poi's blobs a week (under the soles of my feet) I minimise side effects and get the benefits .

Apologies if I've said all this before but it's a system that works for me and I really feel for you right now xx

[CLKD]

by both a psychiatrist and the consultant at Poole Menopause Clinic, that I have an underlying anxiety disorder which has been exascerbated by hormonal issues. The implication being it's basically a mental health issue. From my own experience and from reading all of your experiences I know that this is not the case, but I just don't know what to do now

You have been seen by professionals.  Who have your medical records to hand and who have discussed your symptoms.  What don't you believe?

Despite sharing experiences here, none of us are medically trained.  I can't understand why you were given chemotherapy if your breast disease wasn't hormonally driven ......... nor why you were suddenly into meno symptoms. 

How were your anxiety levels prior to your surgery, apart from what would be 'normal' worries pre-operation?  I have been a worrier since age 3 when I had my first panic attack  . 

Have you tried yoga?  Many years ago I worked with a Consultant who recommended it for patients who suffered back problems.  It is about taking time for yourself in a safe environment, either with a 1-1 teacher or in a group.  As well as needing to practice at home, to keep the body supple.  Which means taking time out to calm the body down front the top of the head to the toes.  It takes focus.

If you are feeling suicidal then hormones are impacting on your mental health.  How do you know where your hormones are, i.e. oestrogen levels?  You may not require any HRT at this point but unless you stop with the support of your GP you won't know whether your body is flying a bike or riding a kite.

Have you considered keeping to one thread so that responses don't become lost?  Also have you contacted the Surgeon who did your breast operation?  Or an endocrinologist - I thought about this in the early hours thinking about you 

[racjen]

Hi Racjen - me again  - please don't feel my post is sharp or there are too many questions  - it is just the way I analyse things (I have to analyse things for my job to provide solutions and I break things into chunks  ) and it will probably help the other ladies too who would want know so they can suggest stuff.  You need to be specific.

"high doses of oestrogen" - what did you take and for how long?
Utrogesten - how were you taking it?  When you changed - which progesterone did you change to?

In the timeframe at what point was the testosterone introduced? What was prescribed and what dose?

Comment = Lots of us are aware of the suicidal depression associated with meno and if you never had it before meno I think it unlikely to be underlying problem that you have always had but defo to do with meno.

Forget choices at the moment - the info above needs considered.  Do you have the time or the patience today to tell us?  Don't worry if you don't.  We will all still here when you do!  Once we have the what and when, then we could move on to "how did you feel at each point"!  XXX

High doses of estrogen - I've been on Evorel patches all the way through this, dose got as high as 2 x 100 patch (twice weekly) - after a couple of months at that dose blood test showed my level was over 2000pmol so dropped back down to 100 patch. I've been taking it at that dose since then (around 6 months) and seem to be maintaining level of around 1000pmol.

Utrogestan - 100mg vaginally for 10 days every month; also tried levonorgestrel in form of FemSeven patches, and Mirena - even worse, only lasted 3 days before I had to have it removed.

Testosterone - originally prescribed Testogel, pea sized blob, at same time as estrogen, but I realise that that early on it had no effect because my estrogen level wasn't high enough. I tried it again once my estrogen level was getting into the high 100s, this time Testim. Amazing result for about a week - feeling of well-being, energy, anxiety reducing, incredible effect on my libido - then it all just stopped and was replaced by depression. Have tried again twice since then with Tostran, both times the depression starts within 24 hours.

PTSD - I had EMDR treatment with the Crisis Team, which helped a lot with post-cancer depression and distressing memories, but had no impact on the anxiety whatsoever. They were of the opinion that it's hormonal too, said they see quite a few women in a similar state since menopause clinics have been closing down, but the message doesn't seem to be getting through.

[CLKD]

You mention distressing memories which will have impacted on your mental health.  Do you feel that you were rushed into the surgical intervention? 

[racjen]

by both a psychiatrist and the consultant at Poole Menopause Clinic, that I have an underlying anxiety disorder which has been exascerbated by hormonal issues. The implication being it's basically a mental health issue. From my own experience and from reading all of your experiences I know that this is not the case, but I just don't know what to do now

You have been seen by professionals.  Who have your medical records to hand and who have discussed your symptoms.  What don't you believe?

Despite sharing experiences here, none of us are medically trained.  So anxiety disorder maybe the basis of your problem exacerbated by hormonal upheaval.  I can't understand why you were given chemotherapy if your breast disease wasn't hormonally driven ......... nor why you were suddenly into meno symptoms. 

How were your anxiety levels prior to your surgery, apart from what would be 'normal' worries pre-operation?  I have been a worrier since age 3 when I had my first panic attack  . 

Have you tried yoga?  Many years ago I worked with a Consultant who recommended it for patients who suffered back problems.  It is about taking time for yourself in a safe environment, either with a 1-1 teacher or in a group.  As well as needing to practice at home, to keep the body supple.  Which means taking time out to calm the body down front the top of the head to the toes.  It takes focus.

If you are feeling suicidal then it is a mental problem made worse by hormonal upheaval.  How do you know where your hormones are, i.e. oestrogen levels?  You may not require any HRT at this point but unless you stop with the support of your GP you won't know whether your body is flying a bike or riding a kite.

CLKD, this is a really confusing post. We've had many discussions on here about the difference between pre-existing anxiety disorders(from which you suffer) and those brought about by menopause, and it's not that difficult to tell the difference, the main giveaway being that if you never suffered from anxiety before menopause it almost certainly has been caused by that. I have never been a worrier in the past.

Breast cancer can be hormonally driven (most commonly either estrogen or progesterone or both), or not, in which case it's called triple negative. It's still cancer, in fact it's a more aggressive, harder to treat form of cancer for which stronger types of chemotherapy are given - these drugs destroy the ovaries. I know that my hormone levels were non-existent as I had blood tests straight afterwards which showed that, and there's no reason to think at my age that they'll recover.

I go to a yoga class twice a week and practice on my own every day; I also meditate and use relaxation CDs.
 

[racjen]

You mention distressing memories which will have impacted on your mental health.  Do you feel that you were rushed into the surgical intervention?

No, absolutely not. Going through cancer as a single parent of two teenage daughters is a very distressing experience which left me with upsetting memories, simple as that.

[Conolly]

Hello racjen,

What drugs did you take during chemotherapy, if you don't mind me asking?

Conolly X

[Ladybt28]

Perinowpost  and racjen    I think you may be onto something perinowpost about "high levels of oestgrogen" but it might be helpful to know which oestrogen method and what dose racjen?

CKLD - racjen said no high anxiety before meno and to be honest her GP's and consultant's have been far from helpful plus monitoring hormone levels which is done through bloods is far from reliable.  Whatever is happening is most definitely as you say hormonal upheaval but as has been said many times before on the forum (which means I am going to disagree with your "kite riding" comment  What the bloods say/what the symptoms say and reactions to various treatments can vary enormously. Things are never really that clear cut. One small tweak that you wouldn't think would make any difference in treatment can make a life changing result happen.

Racjen has asked for suggestions but personally I think we all need to be clear on what she has tried, to what level and what actually happened.  I don't want anyone to take offence - all comments are helpful in some way but I found the more confused and desperate I was - clear specifics were easier to get to grips with than generalisations.
Until she tells us her current doses- it is possible that the suggestions will cause more confusion???

[CLKD]

With no support?  No family, friends.  No families of your daughters to talk with whilst you were going through surgery?  Who looked after them?  It adds to any stress and anxiety already present with raising children, particularly being a single parent.

I was offered the opportunity of talking with other patients at similar stages but didn't want to engage in case they didn't survive.  I didn't want to think about where I might end up.

There wasn't a dedicated breast nurse either but I had good support from the Consultant, Oncologist and their Staff. Could you go and discuss with the Staff at the Hospital or see if there is a Breast Nurse who could listen, i.e. start at the point where your body was pushed into menopause?  Explaining it as you have, it seems like you've seen lots of medics who have little knowledge of how the various surgeries can impact.

[CLKD]

No offense.