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[Tempest]

It never rains but it pours.

Today I received the results if my Cardiac Perfusion Scan. As many of you may know, I've just started Premarin after a hellish 17 months mainly without HRT following my Oopherectomy (I also have previously had a hysterectomy at 36, I'm 47 now).

The results show an area of reversible perfusion, and the cardiologist recommends that I start Clopigrogrel and Bisoprolol, and that he is seeing me shortly back in clinic to discuss the findings. To say I am deeply upset and depressed about this is a massive understatement. Just 2 years ago, I was fit and healthy and used to enjoy walking with my Husband. Since the oopherectomy, I have to be honest and say that I've progressively become a total wreck, a complete shell of the person I once was both physically and mentally. In both ways, I don't even recognise myself any more. I was hoping that starting the Premarin might start to give me a little quality of life back, and now this.

I'm assuming ahead of an appointment I will be booking with my GP (hopefully Monday - and I'll be going to see someone else at the practice, not the female GP I've been seeing lately as I'm sick of her patronising manner), that I'll probably now have to stop it. I was already very depressed about being on this drug anyway - I just don't like the increased risk profile of it. The Menopause Consultant was very well aware that I had the cardiac perfusion scan results outstanding, so I was surprised he chose to put me on it anyway.

I'm on a tiny dose of 0.3mg, and to be honest although it's early days, I feel nothing but totally crap on it. Not even a glimmer of a sign of symptom relief after 11 days from hot flushes or night sweats. I'm bloating horribly after eating. My moods are still horrible (probable even more depressed than I was). I now have severe reflux that I haven't had before and cramps in my calf muscles.

This is all too much. I actually said to Hubby today that I don't think there's much point carrying on anymore. In recent weeks, I've ended up in A & E, been referred to a psychiatrist and also had 'the incident' that I previously wrote about in another thread I started. I think I've reached the end of the road.

I can't live with HRT, and I can't live without it. My body seems to hate it in whatever form I try, but if I go without it the physical deterioration is getting alarmingly worse. I'm pretty sure there is also now something going drastically wrong with my waterworks too. Peeing is taking about 10 minutes to complete, and I have to spend about half an hour on the loo before bed each night or else I have to get up out of bed again as soon as I get in. The GP is still withholding the vaginal HRT.Patches of my hair are falling out. My skin is unbearably dry and itchy. My heart races scarily whenever I exert myself. And my hip joints are excruciatingly painful in the mornings.

Hubby has been at home with me since Tuesday (thank heavens). It's been a week since my Psychiatrist sent me to A & E in an ambulance as he was alarmed by my physical deterioration. I spoke to the GP when I got home then and she said she would be in touch as soon as she got the A & E report. We've heard nothing.

All in all, a total misery memoir so please excuse me. We did go out today, and I sat by one of our marvellous Loch's here in Scotland and sent out a prayer that something HAS to change for the better soon, surely? And then we got home I found the Cardiology result letter on the doormat.....

If anyone can cast just a glimmer of hope that I might actually still be able to take the HRT (even though it's not working at this paltry dose), I'd be glad to hear your thoughts.

Sorry to pour it all out here ladies, but I really have nowhere else to turn (and I'm definitely not phoning the 19 year old 'support worker' that they assigned me at the CMHT, even though I'm feeling so low. Dealing with her just makes me even more depressed).

Thank you for listening and being here. It's really very much appreciated.

[Maryjane]

I can't offer any real advise , didn't want to read and run.

I don't no your history test HRT .

Re waterworks , you really need local oestrogen , it can also be the sign of a UTI which we are more prone to as we age , another thing to add to the list .

This meno lark is the pits.

[Evelyn63]

Oh Tempest, I honestly don't know what to say or advise.  Obviously you need professional advice  and treatment from your cardiologist , but in the meantime I just wanted you to know I'm thinking of you and you aren't alone.  God Bless and praying for healing of body and mind x

[CLKD]

Ring your Psychiatrist?  Tell them that the GP hasn't been in touch with regards your recent admission if necessary, ask to be admitted until after the Bank Holiday?

[kpatton56]

Hello Tempest
Like Evelyn I will pray for your healing. Try not to jump to conclusions re your HRT. Once you get things sorted with the cardiologist the rest can be addressed. I have a good friend who like me is a nurse still working at nearly 60. She has been on cardiac drugs for many years and is well and very active. Brighter days ahead! Xx

[Freckles]

Oh my, poor you! You've been through such a lot.
I'm not a medic but do understand that low mood, aches, pains, problems peeing, etc. etc.,  often result from hormonal imbalances and the wrong type of HRT being prescribed and often misdiagnosed . 
Obviously I don't know your history re HRT treatment, but can say that I had similar problems (albeit without the heart condition)  and eventually found the Ultrogestan tablets/Oestrogel gel and Testim gel treatment regime to be life changing for me.
I'm NOT allowed to say which private practitioner on here I saw, as some members get upset if I do (I had no option as my GP was appalling), but the treatment regime IS available on the NHS.
Do PM me if you want further info.
Hugs xx

[Tempest]

Thank you so very much everyone. It's very greatly appreciated, and Hubby wants me to say thank you to you all too as you've been so supportive and this helps him too.

We're really at a loss as to what to do. My MIL who is 78 has been wonderful too, she has been popping little cards in with lovely messages in them the last few days, and she was there with me at A & E the other week. She is about ready to blow her top at my GP! Without her and Hubby, I don't what I would do.

CLKD, no dice on being admitted to hospital, if you mean psychiatric. They will do anything not to admit you, and the local hospital (which is huge), is at full capacity and they are now sending patients to 'board out' from the Glasgow area to Perth and Inverness! People are getting stuck there for weeks, hundreds of miles from their families. I couldn't bear that! Mental health services are falling apart here as there are so many people being admitted for drug psychosis from using illicit drugs, that it's drowning the system. The last conversation I had with the 19 year old 'support worker' had her telling me '(using my first name in patronising tones), you are coping far better than you think you are. Hubby is there to support you'. Well, it's a good damn thing he is, but the poor guy is now at breaking point with all this. He's on leave for 2 weeks as his nerves are now shot to pieces, so he's had to take holiday. I keep thinking this is not what he should have to deal with on his holidays, it's not fair on him!

Freckles, I'm going to say it even if it gets me into trouble but the NHS is rubbish at treating us menopausal ladies. The lack of knowledge by GP's and some Consultants is appalling. I know to whom you refer, and we are seriously, seriously thinking of getting an appointment face to face now and travelling down. I think face to face is the only way to go. I know that this professional wouldn't be using Premarin, and that they wouldn't have any qualms about starting the Testosterone at the same time, balancing as we went along as I received this information when I phoned their secretary and emailed my details in previously. I think this is why my mood is in the toilet!! I just keep thinking about Beverley Callard (Coronation Street), who actually underwent ECT following years of mental problems after her hysterectomy, only to have her mental health restored with the use of Testosterone. For us ladies especially who have no ovaries, apparently we lose 70% of our Testosterone making ability with our ovaries gone. No wonder we feel horrendous, and dont do well on estrogen alone!!! NHS Consultant's are actually stifled on this issue by the NICE guidelines, as it states it is only to be prescribed for lack of libido, when in fact it does so much more. And they are nervous as heck about prescribing it!

I have done a little research to see how bad my heart problem may be, and it may not be bad enough at all that I can't use either estrogen nor testosterone. I will be phoning the Cardiologists secretary on Monday to see if my clinic appointment has been scheduled and when it is so that I can get a clearer picture as soon as possible. I have also discovered details about something called Cardiac X Syndrome, which apparently is caused by a lack of estrogen in women, so I will be discussing this with the Consultant when I see him. The reason for my perfusion scan was due to sudden onset chest pain, which I have never experienced before and this fits. It doesn't of course cover the area of perfusion, so I will need to discuss that with him further.

Today I'm just pottering around d at home with Hubby as best as I can. The good news is that I didn't wake up with the infernal shaking as badly as yesterday morning.

Thank you all once again for your incredible kindness, we both appreciate it.

[walking the dog]

Tempest I feel your pain bless you. I was allocated a cpn in may I'm 50 he is 25 he hasn't a clue what I'm going through. I did consider asking for someone else and my gp said she would write on my behalf if I so wished but it could take months to get a replacement and i waited a long time to get the one I have got. However all he says is to look at how well I'm doing he constantly checks his watch, I'm allocated thirty minutes every three weeks but he has me out in twenty! I'm seriously considering discharging myself but I have been able to access therapy through them so that's why I stay
The mental health services are shocking, I think they are over stretched but surely they could place clients with workers more suitable to needs and age . Not just draw names from a hat which is what it feels like.
I know our situations ae different Tempest but I just wanted to reach out and say I understand and I'm thinking of you xx

[Tempest]

Dear Walkingthedog! I hear you, every word. I know EXACTLY how you feel about wanting to discharge yourself, but understand that you want to hang in to get the therapy. I've discovered that instead of the time served 'old school' CPN's who previously worked in hospitals and then transferred into working in the community, they are now training people with social work qualifications on 'conversion courses', and allowing them to work in the role of CPN under the new mantle of 'key worker', although when I've contacted the CMHT they refer to the 19 year old assigned to me as 'my CPN' (I laugh)...

My 'key worker'/CPN' or whatever the hell she's supposed to be actually just has a diploma in social work from our local college. I did my background checks (amazing what you can find out)! But she acts like God. The power has definitely gone to her head as I got told off for contacting my Psychiatrist directly via his secretary (and he didn't have a problem with it. It was him who subsequently sent me to A & E in an ambulance). She phoned me the following day, and asked me not to 'go over her head' again. Well, she can go to a fiery, burny place because quite frankly I'm not going to be run rough shod by an immature idiot like her who spent the whole time on our first meeting in my home answering her mobile to calls from a bridal shop!!!!

I'm sending you biggest Hugs, and please feel empowered (I know it's hard when we're so low), to speak up and insist to your GP that this relationship with your CPN isn't working. I do hope you get to hear about therapy soon!

 Thank you so much for your very kind words. xxxxxx

[Tempest]

Oh, and as an exercise Hubby and I have just phoned a pharmacy in Glasgow who dispenses private prescriptions as I still have the prescription a certain private consultant wrote for me after my email (if you've been following, the Consultant wrote me up for Utrogestan as well by mistake, so I didn't use it. I was assured this was a mistake and that I should just disregard this and that the rest of the RX was correct).

I'm very surprised by the cost. £43.09 for everything I need for 1 month, with a discount to be applied when I have the items dispensed. The Testosterone was actually the bulk of the cost (36 sachets being the smallest order available. I need just 1/8th per day). The RX is good for 3 repeats, and can be used for up to 6 months between each repeat. We are going to get it dispensed on Monday. And then I'm going to phone this certain Consultant's secretary to get advice on where to go from here (i.e. if I can do a telephone Consultation initially, with follow up appointment face to face). All of this of course after I've contacted Cardiology and explained my current situation. I'm encouraged as the finding on the report ON THE BACK of the letter I received from the Cardiology Consultant that I received yesterday and didn't spot until earlier today states 'however this is a reassuring low risk test, may be a false positive. If GTN spray doesn't resolve any further pain, suggest proton pump inhibitor in place of Clopidrogrel and Bisoprolol. Phew!!!

First lesson: always read the back of the blinkin' letter, even though the front was signed off! (Since when have they printed test results on the back of the letters)?!?

I hope I don't get into grief here for quoting ball park costs of private prescriptions, but I suspect I may. I've not mentioned any brand name preparations specifically in regards to my RX nor Consultant's names. I just wanted to give some hope to several other ladies who I know were interested that we're not talking mega bucks if this is the road they choose to pursue. After all, we are all entitled to choice are we not?

I'll pop back on later, but I kinda suspect this post might have disappeared by then. I'm just off to eat my porridge  and subsequently pop more anti acids (yes. Another lovely side effect of the Premarin)!

[CLKD]

Does your husband have a break from you at all, i.e. a brisk walk or a pint with his mates?  When I was very depressed I really didn't want to be alone but he had to go work, he took my tablets with him and came home at lunch time to dispense as necessary.

Are you able to go for a walk with him as a break from what's happening ? 

As for the CPN suggesting that 'you went over her head' …….. it's a different speciality for starters, she's a CPN and he's a Psychiatrist!!!! She'd be out my door, pronto 

Try not to plan too far ahead, I still don't look any forwards than half a day!

[MIS71MUM]

Hi Tempest

I'm not sure what to say apart from what a nightmare you are going through.

I was going to post on your other thread earlier this week about Premarin. There was a few ladies saying how good it was and even thought of taking it myself!

Where would we be without this forum or the Internet to get our support or research? Because we certainly aren't getting mental health support or it from our GP's. It makes me so mad.

I had no idea about Beverly Callard, I know she had ect but didn't realise it was the T that sorted her out. I follow her on Twitter and she's really good at replying to tweets, might ask her to do a quick post on MM, to give us all some hope!

I'm not sure about the cardio stuff but the GTN spray and bisulprolol rings bells to me as my Mum had heart trouble. She takes B and says it's fantastic and she feels better and has so much more energy. In fact most days, I am in awe of her as she has so much energy and spirit. She's 72!

Sending you a giant virtual hug 👩‍❤️‍💋‍👩💐

[dahliagirl]

I had to take a private prescription to the local pharmacy for OH who was supposed to start on them immediately so no time to go through the GP.

It was steroids - eyewateringly cheap - and so quick to dispense!  I expect some things are the other way around though, but the pharmacist can tell you how much.

Sorry for your troubles. Hope you have a good weekend Tempest. 

[Tempest]

Hi, Mis71mum! Yes, I seriously don't know what I'd do without MM. It's wonderful. I do worry that some of my posts have been a bit too passionate lately - I hope it doesn't get me into any trouble. I also hope that maybe someone in a professional capacity reads what we post from time to time so that they can see what struggles we face, and how it severely impacts our lives.

This is the thing - if they provided us with proper, prompt advice and treatment and a bit of compassion, we are all intelligent ladies who can then go about our lives productively and take good care of ourselves. It would probably save the NHS a whole load of money as we wouldn't end up in the mental health system, suffer from debilitating illnesses causes by estrogen deprivation and spend hours in our GP's surgery with the myriad symptoms of the menopause either being fobbed off or being sent for tests that we actually don't need. Indeed, if GP's actually REALISED what the symptoms of menopause are (and as we know there are many), instead of just assuming it's just hot flushes, then we might actually get somewhere. They also need to realise that the duration varies for every woman, and it's not going to be 'over in a couple of years'. I was even told this about my surgical menopause!! I mean, how clueless can you get? I shall be in estrogen (and testosterone) deprivation for the rest of my life! How the hell do they think the adrenal glands are going to make up the shortfall of what my ovaries would produce? Science knows that the ovaries do not just shrivel up and die, they continue to produce hormones for many years post menopause (albeit in much smaller amounts).

Wouldn't it be wonderful if Beverley would write a little something for MM? I read more about her online. Her troubles started after her hysterectomy, and her ovaries then completely shut down not long afterwards. I read an online newspaper article where she talks about having a complete meltdown weeks after her testosterone therapy was discontinued (they weren't manufacturing it any more), and how the doctor she saw treated her like a complete idiot when she was in so much distress (these are her exact words, and a story so many of us are familiar with ourselves)! It was Denise Welsh who recommended 'a certain consultant' to her and he restarted the Testosterone therapy, and it transformed her. She above anyone else would therefore be an excellent voice to write a little article or post, if she would.

I'm so heartened that your Mum is doing so well! My MIL is the same, at 78. She walks everyone's dogs whilst they are at work where we live, so as to keep active after her wee Westie died last year. She really has been a wonderful support to me just lately.

Sending you hugs right back - do let me know if Beverley replies! xxxxx

[Tempest]

Thank you so much, dahliagirl!

I just KNOW I'm going to overstep here if I don't watch it, but I was truly shocked when I found out the cost of one month's supply of Estrogel on a private prescription, as I know some ladies have been told that it is too expensive by their GP's (I asked about a few preparations, just in the name of research,). This really stood out though, as you would think ladies are asking for gold dust the way GP's limit this stuff (sometimes insisting on only 1 pack when a person needs 3 pumps per day, for example).

So I AM going to share it here. It's just £ 5.76 for a month's supply at 2 pumps per day, and that's at RETAIL. The NHS gets it much, much cheaper than this! If one was to buy more than 1 cannister at a time on a private prescription you would then receive a discount, and then there is the pharmacist's discretionary discount to be taken off the retail price (most do this).

I think I speak for the vast majority of ladies here when I say they would be happy to pay for a private prescription for this if it was the most effective HRT for them, or even pay just so that they can actually get to try it without their GP making wild claims about cost (and in some  cases availability) to justify not prescribing it.

We're getting fobbed off, I think that much is becoming clear!!