Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tempest on August 07, 2016, 07:51:58 PM
-
Hello again everyone. As you may remember I was a member just a short while ago and left to try to get myself sorted out a bit. Some of you may recall that I am 17 months BSO, with TAH previously in 2006. I'm 47.
I was struggling with my first HRT after over a year with none, which was Estrogel. I was using 2 pumps, then reduced to 1 after winding up in A&E with crushing chest pains one morning. Upon examination (treadmill), it was found that I has ST depression in recovery and was referred for a cardiac perfusion scan, which I am awaiting the result of.
The cardiologist advised me to stop the Estrogel completely as I really wasn't feeling good on it at all, and three days later something horrific happened. **Can I just warn anyone who is very easily upset NOT to read on - thank you**.
I went out for our anniversary dinner with Hubby, and half way through our meal it was as if something just 'snapped' in my mind. I excused myself to go to the ladies room, and on the way to the hotel foyer I got an inexplicable compulsion to throw myself from the hotel parapet. I was absolutely terrified, shaking and felt very unwell. I returned to our table after trying to compose myself as best as I could in the loo, and straight away Hubby said 'you look awful! I'm taking you straight home'!
When I got home, I was a mess!! Neither of us knew what else to do, I can actually just remember literally crawling on all fours on the upstairs landing feeling as if I'd totally lost my mind. Hubby suggested I apply a pump of the Estrogel in case it was due to a sudden drop of hormones that may be the problem, and this made sense. This I did, and after about 4 hours I felt a little better but not much. I didn't sleep that night at all.
Next morning, Hubby left for work and after that I literally have no idea what happened. All I know is that I somehow (after the fact) had gone to the closet, hooked two looping belts over a hanger on our bedroom door and tried to hang myself. The door hanger must have broken but I awoke after passing out and found myself on the floor. I literally had no recollection of what had happened at all.
I was in a terrible state, so i called NHS 24 and explained what had happened, and they immediately transferred me to a doctor who then sent another GP out to me, and the first doctor stayed on the phone with me until she arrived. Subsequently, she had me transferred to the Acute Admissions ward at our local psychiatric hospital.
I was assessed by a psychiatrist, dosed with Diazepam and kept for 2 days and nights. The conclusion was that I had suffered an acute 'psychotic break', probably due to a sudden drop in hormones. I was released into the care of the CMHT IHTT team who visited me daily for 2 weeks, and was assessed a further two times by a psychiatrist who concluded that I was not suffering from any type of psychiatric illness, but that I had indeed suffered a 'psychosis' of some kind.
Fast forward a couple of weeks, and I was seen by a specialist at a hospital in menopause following an urgent referral. He was a very pleasant gentleman, and I explained in depth my history and my problems with Estrogel. He explained that this was 'the treatment of choice' in my case as I suffer from multiple life threatening allergies and he did not wish to risk an oral route of HRT, and that he would have suggested Estrodot as an alternative, but there was a supply problem at the moment and he felt it might be very hard to obtain a reliable supply. He urged me to try the Estrogel again, starting with 1 pump per day and I very reluctantly agreed.
I was on the Estrogel for 4 days and actually felt ok after getting over my initial nervousness, when on day 5 I awoke to the most horrendous suicidal feelings. It was literally like I had been 'taken over' by something again! Hubby was at home that morning and said that again I looked absolutely awful!! Hubby phoned the GP, and took me straight to the surgery. The GP took one look at me, and phoned our local CMHT and I was taken down by Hubby to see them for an emergency assessment. I was still feel suicidal at this point, with shakes and deathly pale.
They decided for my own safety that I should be admitted again into the local Acute Ward for observation. I spent 2 nights there, and after receiving yet more diazepam and seeing 2 more psychiatrists, it was again decided that I had had some kind of psychosis related to the Estrogel. Again, it was confirmed that i was not suffering from any type of mental illness. After these 2 nights and stopping the Estrogel, I again felt a lot more like myself and the compulsive suicidal thoughts had disappeared.
This last Friday, I had another meeting with a Consultant Psychiatrist and again he felt that these episodes were due to hormonal fluctuation or imbalance in relation to the use of Estrogel.
To say I am washed out, bereft and don't know what to do now is an understatement!!! It has been nothing short of a complete horror story, and I still very much need hormonal support as I am struggling badly with hot flushes, insomnia and very bad joint pains but I am afraid to try anything else now!
The psychiatrist wants me to have a 'wash out' of 6 weeks so that we can talk again and see how I am then. He is astonished that I hadn't been offered hormonal support sooner following my BSO surgery and feels that all in all, I have been through a lot of trauma in the last 17 months of 'knocking on doors' and asking for help, but getting nowhere. Obviously, he has asked me to NEVER go near Estrogel again!
I would just like to say that this is my own personal experience, and it may be very unusual and I'm definitely NOT putting others off from trying or using Estrogel, as it may be perfect for you. But for me personally, it was a total disaster.
I am now exhausted with all this, and am pondering my next move. Obviously, I am now in a much worse place mentally than ever I was before. Should I contact the Consultant in menopause again directly? Go and see my GP again? (Who has previously been no help whatsoever with my HRT). Pull the duvet over my head and give up? Any advice would be very much appreciated as really am at the end of my resilience now.
Thank you for reading, and I hope my story hasn't upset anyone. I was a bit reluctant to share as I didn't want to cause any distress or upset to any of you, but if anyone has any sage advice, I could sure do with it right now.
-
First of all, have a hug. Psychosis is sudden. Usually post natal depression. Which should improve with hormone adjustment which can be Trial and Error. I know of someone who jumped from a window 5 days after the birth of her daughter : she had been very ill following the birth of her son, she waited 7 years B4 daring to try again. It took several months for her mental health to re-balance, I used to look after her daughter in the mornings until Granny came onto the Ward. This young Mum would hear voices from the waste basket so I would move the basket which seemed to help.
You are not alone. Is the CMHT visiting regularly, do you have a number you can ring? I had a Commnity Psychiatric Nurse visit with me and was able to telephone him directly. It was a good support system, giving me a backup when Husband was at work.
You could try an over the counter pain relief for the aching joints. Maybe the Psychiatrist would suggest a low dose sleeping pill or Valium on an as-necessary basis a couple of times a week so that you get good quality sleep, I would ring his Secretary to ask the question - this could then be prescribed by your GP. I assume that you have a follow-up appt. with him, I think that 6 weeks is a long time to wait though ………. I don't think that HRT remains in the system that long.
How badly do the flushes affect you?
Occasoinally patients are sensitive to the fillers/tablets rather than the active ingredient. I would be interested to know if any of the Consultants have seen this type of reaction …………
This too will pass. Remember that you can go to your GP Surgery or a Pharmacist if you feel a danger to yourself, MIND have walk-in Clinics - maybe your husband could look into where you nearest is, I found the Charity useful in Jan.; Samaritans are there to listen and also, if you feel desperate, ring the Psychiatrist's Secretary for advice. We don't bite ;)
-
You could use the 'modify' button to rewrite the title: i.e. 'trigger warning of sudden psychosis reactions' ?
-
Oh Tempest I am reaching out to give you the biggest virtual hug I can. I am new to all this hrt lark so I'm sorry I can't offer any advice or guidance, but I do know there are some wonderfully knowledgeable people on here.
What I want to say though is a massive well done, you are SO brave writing your story here and bearing your soul. You WILL get through this and keep knocking on those doors to get the treatment that you deserve.
much love xxxxx
-
I remember Dr Kathleen Dalton did a lot of work with girls suffering severe PMT so there is hope out there. I think she started the N[ational]A[ssociation]for P[remenstrual]S[syndrome] (NAPS). You may find advice on their web-site too.
Do keep posting here. Apart from the very early hours there is usually someone awake!
Well done on the update of your heading too, I was ages finding the modify button ::)
-
Hello again, CLKD and thank you so much for the hug. I've modified the title of my thread as suggested and hope it makes sense! The last thing I want to do is upset anyone who may be vulnerable.
I actually have a crisis number for out of hours CMHT and can call the Psychiatrist's secretary. They've been pretty good, I have to say. GP was also on the phone last week and spoke to Hubby to do a welfare check. I also have an emergency supply of Diazepam 'in case'.
The flushes are worse in the evening after about 9pm, which I hear is typical. The insomnia is pretty hellish with bad night sweats (I have a fan, and thank goodness it's not scorching right now)!
As for the joint pains, I'm a bit stuck there apart from paracetamol which doesn't seem to touch it. I can't take Ibuprofen or Co-codamol (both on my 'banned list' from my Anaphylaxis Consultant). I still try to keep active though, which keeps things moving at least!
I'm trying to look after myself in general, by keeping a good diet, drinking plenty of water, no caffeine, no chocolate (triggers my flushes awfully - bummer), and no spicy stuff or refined sugar. Dammit, I could sure do with a large G & T right now, though!!! :o
-
Thank you so much for your kind words, Riley04. It's really very much appreciated. :)
-
So pleased that you have a support network in place. One thing I never did was leave the key in the locks because it would mean that Himself couldn't get into the house if I was having an afternoon sleep [to pass the time when depressed] ::). Had he tapped on the window to wake me I would have jumped out and back into my skin ;D.
I didn't have flushes in particular except for an all over 'glow' after my evening bath ……. which could have been hormones or related to the medication I take.
Would pain relief be better in liquid form, might be worth a phone call to the Consultant who deals with Analphalsxis? Might be worth-while updating him anyway.
Let us know how you get on!
-
Oh, if only I could grab a wee afternoon nap! It would be bliss.
Funnily enough, I didn't have no where near as bad flushes before I started the HRT! Now they are truly vicious. I'm guessing it's because I'm much more stressed now? :'(
My Anaphylaxis Consultant is notoriously hard to get hold of. He is also Professor Of Respiratory Medicine at Glasgow University and it can even take my GP sometimes a couple of months to get a reply out of him with a medication query! The Anaphylaxis Service here covers the whole of Scotland, and comprises 1 Consultant and an Associate Specialist (and I'm afraid to say the A.S. is a bit notoriously eccentric)! We unfortunates who attend it have nicknamed it 'Hell's Broom Cupboard' as it's tucked away in a little nook of the University Hospital building. All of us super allergic types kind of cram in there with a look of haunted dread about our persons, madly clutching our epi pens for dear life. We have to laugh, or else we'd cry! :o
-
So sorry you've had to go through such a traumatic time. Glad you're here though for support and talking about it will hopefully help you.
As you've had such a drastic loss of hormonal function, perhaps you could ask your doctor to refer you instead to an endocrinologist. The only thing I found scouting about on Google, was that after having everything removed you also won't be producing many androgens, like testosterone where very low levels do seem to play a role in bipolar, for example. By then adding oestrogen, which you probably need, you could have lowered the androgens further as they have an antagonistic effect (like oestrogen and progesterone).
An endocrinologist would be able to study your whole hormone profile and hopefully find the right balance of what you need, which won't drop anything else down to dangerously low levels.
Good luck and stay strong. x
-
Hi Tempest
Yes I do remember you as we were starting the oestrogel at the same time. I'm so so sorry to hear what you have written and want to hug you and make everything alright for you. I'm not sure if you remember but we both struggled with the oestrogel because of the anxiety it caused and jitters.
2 things that come to mind, you are young enough to try the pill called Qlaria as the cut off date is age 50. Apparently it is bio identical oestrogen so like HRT in many ways.
Also my problems started last year when I came off HRT, and a lot of what you describe regarding uncontrollable urges ring true with me... I walked around like a zombie and was afraid to be alone.
Secondly there's nothing in the oestrogel that you have an allergy to is there? Is this the cause of the horrible reaction you are having?
Take care and keep posting xxx
-
Oh you poor soul , that must have been truly horrific Tempest. The only sudden psychosis I have ever had experience of was post natal related, and not as you would imagine, immediate , but quite a few months later. There seems to be a definite hormonal link, and I sincerely hope the consultant can offer some help and advice. I think Dangermouse's suggestion of being referred to an Endocrinologist would be worth pursuing, a different take on the situation so to speak. Take care, and have a gentle hug.
-
How horrible for you Tempest but so glad that you survived to tell us your tale and thank you so much for sharing it as it may help others. One thing confuses me - you suffered what seems to be an attack in the hotel when you wanted to throw yourself off the parapet but this was before you had used the estrogel so why was the estrogel seen as a trigger?
I wonder if you would like your thread moved to Private Lives so that it is only open for reading by members?
Taz x :bighug:
-
Mahoosive hugs to you !
You are one brave lady to have gone through all this and share
I can't offer any advice but really hope someone, somewhere can help you onto the road of recovery
Annie xxxx
-
This may be worth looking into . Serious B12 deficiency can cause all your problems and many more , my husband was heading for a wheelchair and we were even told he had had a stroke for 24 hours long story short , I took it upon myself to investigate got a private B12 test as by then the docs said stress and Vola B12.
I can guarantee a lot of ladies on here are B12 deficient with symptoms , also the NHS ranges are way off a range between 180- 900 is a huge difference as someone with a reading of 200 may actually need to be at 900 for there body.
To be functioning well we need to be at a 1,000 bit atleast a minimum of 550.
Just worth a thought as it brings on phycosis, and many dementia cases are B12 deficiency .
-
:hug: I'm so sorry to have read your story. I hope it helps to have written it and shared it. Thank you. You will get support here.
-
Lots of useful info here, you'll need a list ;)
How R U this morning? Also your Husband!
I do remember that Dad wasn't allowed VitB12 with the anti-depressant ]?[ medication he was taking so do bare that in mind.
Keep posting ………..
If the Consultant is difficult to get hold of: understandably! : then maybe write him a letter for perusal?
-
Hi Tempest. I can only reiterate what the other ladies have said on here and say what a truly horrible experience you have had and how much it must have frightened you. I hope you get sorted soon but again, keep posting, we're here to listen and help if we can.
:foryou: x
-
Wishing you all the best tempest and hope you can get sorted hormonal and psychological xc
-
Really sorry to hear about your terrible experience, it must have been very frightening.
I agree with others and would say definitely consult a hormone specialist immediately - you need an in depth hormone profile. I also agree about checking for further allergies (again, in depth) and vitamin B12 because that could be part of the problem too - a lot of menopausal women are B12 deficient which can leads to all sorts of problems.
Don't struggle on with this, get some professional help and make sure it is from the right type of specialists. You need to get to the bottom of this.
-
Hi Tempest
So sorry to hear about the dreadful and frightening time you have been having, and pleased you felt able to share it with us. I am wondering if this extreme reaction to estrogel and its withdrawal may be phyiosiologically linked your other severe allergies as it is so unusual? If that is the case it does sound like your Anaphyllaxis Consultant needs to coordinate with your/a gynae as well as an endocrinologist.
Your body must still be in shock from the TAH with BSO - due to loss of testosterone as well as estrogen but it sounds like finding a way to replace these hormones in a way that your body can cope with (and therefore emotionally as well) is going to be tricky.
I can't remember if you have ever used oestrogen patches - the method of delivery may well suit you better than gel - but I can see from what you say that any oestrogen replacement will need very careful supervision.
I hope you manage to find a way through this soon and in the meantime :hug: from me too.
Hurdity xx
-
Thank you so very much everyone for your kindness. It really is very much appreciated!
I'm actually waiting on a visit from someone from CMHT later this afternoon, the idea I think is to offer me some support right now.
Thank you all also too for your very kind suggestions. I am interested very much in the information regarding B12 deficiency and actually have some information to share. In the last 6 months, my upper and lower arms have broken out in profuse petechiae (red spots). They are little bleeds under the skin, and they are literally everywhere. My GP has seen them, and just said 'hmmmm, odd'! I rather thought that she might take a bit more notice, but no. To be honest, I have become so run down trying to deal with this GP that I have given up persuing things with her. I feel really as if I have been banging my head against a brick wall, and have had the stuffing knocked out of me.
Also, the only reason I got a referral to a menopause consultant at the hospital was because my Hubby contacted NHS complaints. They did act quickly, which was good! Sadly, it's not been the outcome I was hoping for though. On the subject of Hubby, he has been absolutely brilliant but things are now really starting to affect him too. He's not sleeping either, and is looking really drawn and tired these days. We are a 'team', him and I and he says he doesn't blame me at all, he is just tired and frustrated with the 'system'.
I have to say that the CMHT and staff at the local psychiatric hospital have been marvellous, including the psychiatrist I saw in the community last Friday. Everyone who I have had contact with in mental health feels that my situation mentally is completely related to the surgical menopause, and that something needs to be done elsewhere within the health system to help me. Quite how I can get this to happen now, I have no idea. I feel like I'm trying to run a marathon on two broken legs just now. Sorry to sound so negative, but it really is one hell of a struggle for both me and Hubby right now.
-
Oh, and sorry! I did mention about Dr Heather Currie's email service to Hubby last night, but we're thinking that maybe my situation would be a bit too complex and much for her to reply to? What do you guys think? I think I'm just desperate for something to take to my GP so that they might actually take notice and do something! This GP is notorious for not making referrals, so I don't think she'll be receptive to my asking to be referred to an Endocrinologist. I think this makes perfect sense though!
I'm also going to chat with the support worker later and see if I can share how I'm feeling. Not sure if she will be able to offer any advice though. I'll see how it goes and I'll let you know later how it goes.
-
Lovely to hear from you.
I suggest that you make notes of the ideas given here, comprise a list? Then prioritise, dependant on how you have felt recently, against the Speciality which would be appropriate for advice.
Also, mention to the CMHT if there is a way of getting a referral rather than going through your GP? For a GP to say 'oh odd' and to take any action makes me :cuss:.
Maybe too ring to find out if it really is necessary to wait for 6 weeks, as the sooner you get referred the better. Once you have the information you can decide which treatment to start.
-
How frightening for you and you must be terrified it happens again - , think the endocrinologist is good advice - I had really achey joints and my thyroid was borderline, it took a few months to help but it stopped the aches and pains which i had put down to age. YOu can find out about your thyroid by testing your waking temp every morning for 10 days - it should be normal, :) if its consistently lower - mine was 34 degrees , then thats a reliable sign your thyroid is underperforming. Easy test to do before u get up ,
-
How special is that , you and your husband are " a team " but not good that the system is having such a negative effect on both your lives. Would you consider going privately Tempest, even just for a one off consultation ? Perhaps the mental health team could recommend someone ?
It's a route my husband and I both go down whenever we feel that we need taken seriously, and to date has been worth every penny. Rather than joining a health insurance scheme we put money away each month and use it when necessary. Having said that on recommendation of a friend we joined a health scheme a few months back, very reasonable monthly costs and excellent to deal with.
-
Hi Tempest
I was reading some of your earlier posts today from when you first tried oestrogel and you were thinking of having your oestrogen levels tested. Did you ever get this done by the way.
As Hurdity says, the patch is a steadier supply of oestrogen, I found the gel gave me too much of a hit all in one go.
I hope you get referred to a endocrinologist as surely these are life threatening symptoms you have been faced with.
Good luck and thanks for sharing. Wishing you all the best xxx
-
Thank you so much for some more great advice and kind words, everyone! Mis71Mum, think I had a very similar situation to you with the Estrogel, with highs and lows (aside from the other business)! The menopause Consultant's suggestion was to 'apply as needed throughout the day, up to 7 pumps'! Whew!! I'm really glad I didn't take his advice, considering! In any case, supposing what happened hadn't happened, I really wouldn't have been able to manage sloshing this amount of gel on throughout the day (he literally said 'at intervals throughout the day as you feel you need it'). I thought this advice was a bit random, actually. :o
The young lady from CMHT has been, and she was really nice. She said that the Consultant Psychiatrist doesn't believe I have mental health issues, but that I am suffering a lot of stress right now so she is going to be a 'listening ear' and help me to build my confidence again so that I can seek the help I need with my hormonal issues. I did discuss whether an AD might help, and she said that the Psychiatrist wants to see what my 'baseline' mood is like in a few weeks, hence why he wants to wait a bit. And I can have more Diazepam, if I need it.....(I'll be keeping it to a minimum)!
Oh, and Sparkle - maybe these wee red dots are just another anomaly that we get at a 'certain age'. I hope so, anyway! :P
-
This may be worth looking into . Serious B12 deficiency can cause all your problems and many more , my husband was heading for a wheelchair and we were even told he had had a stroke for 24 hours long story short , I took it upon myself to investigate got a private B12 test as by then the docs said stress and Vola B12.
I can guarantee a lot of ladies on here are B12 deficient with symptoms , also the NHS ranges are way off a range between 180- 900 is a huge difference as someone with a reading of 200 may actually need to be at 900 for there body.
To be functioning well we need to be at a 1,000 bit atleast a minimum of 550.
Just worth a thought as it brings on phycosis, and many dementia cases are B12 deficiency .
My b12 came in at 197 the same time they told me I was perimenopause , they wouldn't treat me and I had so many symptoms. I'd never heard about b12 until they called me saying it was a bit low and wanted to retest, they still haven't acknowledged it 4 years later so I asked for copies of all blood tests since 2012 and I was out of range on all the bloods that involved b12
Annie X
-
They wouldn't treat it properly and I was less knowledgeable then, they gave me a leaflet on pernicious anaemia and b12d and I'm not vegan or vegetarian so knew it wasn't anything I did so after a confrontation at the docs they gave me 3 months of b12 tablets and I went back saying I feel no better so retested my blood and it'd gone just in range at 219 so they said its def not b12 it must be menopause, so a nurse friend at Xmas injected me, I had my epipens with me in case of anaphylaxis and although there's been some improvements I'm not fully better, 18 months I developed double vision and b12 can cause that plus I'm in pain and not very mobile since October last year with slipped disc that doesn't heal and hip pain, I'm trying to go 4 months without b12 so that I can go back and ask for a retest now I know more about it
Indigestion/heartburn meds and metformin can also reduce b12 absorption also no gall bladder, lots of reasons but none of these apply to me
Annie x
-
I went to a lecture on B12 and thyroid a couple of mo the ago at Logjborough university, and this lady was giving a talk .
My husband has been in contact with Dr Chandry also , as the paper says anything under 500 and you are deficient better to be at a 1,000.
B12 is the elixir of life , from where everything else centres from. Many ladies with B12 deficiency will also be deficient in Vit D , ferritin and have thyroid issues but again the NHS within range are very definitely off range for many, as no ones body is the same and drugs like omeprazole stop the absorption of B12 , and when we have an anaesthetic this can also deplete B12.
http://www.dailymail.co.uk/health/article-3729847/Feeling-tired-forgetful-Vitamin-B-levels-blame.html
-
He is hugely better , he was heading for a wheelchair by Christmas I would say and early retirement.
Problem is if not caught early enough the damage is irreversible, appaz it has got lost in medical teaching as to the dangers of missing it.
-
Tempest- just caught up with your thread and just want to say I'm thinking of you and sending you a BiG :hug: X
-
Sorry to hear you've been through so much can I say very scary too!!
It all brought tears to my eyes!!
Also your are very lucky to have your husband by your side what a rock he is!
Im sorry to hear it's now effecting him too.
Sending you both a big hug!!
Take care!!
:bighug:
-
I went to a lecture on B12 and thyroid a couple of mo the ago at Logjborough university, and this lady was giving a talk .
My husband has been in contact with Dr Chandry also , as the paper says anything under 500 and you are deficient better to be at a 1,000.
B12 is the elixir of life , from where everything else centres from. Many ladies with B12 deficiency will also be deficient in Vit D , ferritin and have thyroid issues but again the NHS within range are very definitely off range for many, as no ones body is the same and drugs like omeprazole stop the absorption of B12 , and when we have an anaesthetic this can also deplete B12.
http://www.dailymail.co.uk/health/article-3729847/Feeling-tired-forgetful-Vitamin-B-levels-blame.html
Maryjane many of the members on the b12 group I'm on plus the admins went to that
Ditsy me didn't realise how close it was to where I live otherwise I would've gone
-
Lol ANNIE it was very interesting , and makes you realise there are so many problems thyroid included just being swept under the carpet by our Gps. Long term it would work out cheaper for the NHS.
-
;D.
-
I had blood tests b12 below 200 and my doc got upset and said I needed shots or I might have irreversible nerve damage. I went to a neurologist and he said take the sublingual pills and get methycobalamin instead of cyanocobolamin as the cyano is not the best active form of b12. I followed the neurologist advice and take a 5000mg methylcobalamin sublingual tab about once a week and my blood levels stay around 1000. It is a very cheap vitamin.
EDIT.....my pill is 5000 mcg or 5mg NOT 5000mg
-
Tablets are ok if you don't have absorption problems but sublinguals are definitely better x
-
Hello everyone. Annie 0710, i'm so sorry to hear that you're struggling to get help with your B12 deficiency. And you're another 'lucky' one like me who has to carry epi pens, huh? It's not fun, is it? Are you multi medication allergic, like me? My allergy troubles started about 4 years ago, when I entered peri (and before my BSO surgery). I'd be interested to hear more about your allergy problems, and if they started/got worse since the start of your menopause.
Well, yesterday I went to see the GP. Hubby came with me, as Tuesdays and Wednesdays are his 'weekend' from work. I also phoned the Menopause Consultant's secretary to pass on a message as to what's been happening, and he's on holiday at the moment (it's that time of year)! The secretary said that I clearly need to be seen before my scheduled return appointment in February next year, and that she would email him.
The GP appointment left me feeling a bit low, I'm afraid. I have mixed feelings about what she had to say. She said there was no way she wanted me to start another HRT, and did not even want me to start the vaginal estrogen the Consultant had prescribed, even though I now have very painful symptoms down below even when I go to the loo. I passed on the message that the Consultant's secretary would like her to contact the Consultant to discuss my problems, and she said she would try t o get hold of him next week when he returns from his hols. I understand her wanting to be cautious in case I have problems again, but I didn't think there would have been a problem with the vaginal estrogen?
She also insisted I raise my antihistamine dose again to 20mg cetirizine daily as it might 'keep me calm'. I explained that it actually gives me a very dry mouth at this dosage and that I feel it's making things down below worse too, but she insisted. And she gave me Zopiclone. And wanted me to take more Diazepam. I don't know if it's just me and how I'm feeling at the moment, but this all seems a bit of a 'victorian mad woman' approach to me, if you see what I mean. I'm trying to think positively a bit though, and thinking that maybe she's just doing what she thinks is safest for me at the moment until she can get some specialist input. I sincerely hope this is her thinking!
-
Oh, and I also wanted to tell you what happened when I did consult Professor Studd by email before all of this recent mess began. I sent him detailed info. as requested, including of course that I'd had TAH/BSO and he replied that he would mail out an RX that I could either get filled privately or take to my GP. I was very the moon!
When it arrived in the mail, he had written me up for Estrogel 3 pumps, Testosterone gel and.......Utrogestan. I phoned his secretary and she said 'oh, he must have made a mistake! Just cross that bit out'. Subsequently, I didn't use this RX as I didn't feel my GP would be impressed.... ???
-
He obviously wasn't listening :kick:
As for your GP not prescribing anything for vaginal atrophy, I would go back and sit there until she discussed again! The whole body dries out as oestrogen levels drop: eyes, deep in the ears, nostrils, skin in general …….. stands to reason that the vagina suffers but it came as a shock :o to me, fortunately my GP recognised that the regular urine 'infections' were VA!
If the Consultant has prescribed it then who is she to not agree? There is very little up-take of the preparation and a LOT of relief achieved!!!!
-
Perhaps you could call or email the consultant's assistant again to ask if they would prefer you to see an endocrinologist so they can check all of your hormones. if they are struggling with what is best for you, they may be keen to pass you on to another specialist so it could be a fast-track way to skip over to someone more thorough, rather than asking the GP who may see this as confusing the situation.
I know how those GP visits can make you feel, especially when you're already feeling anxious. It feels like the most important thing to you and the GP just doesn't want to commit to anything they see as a risk. I remember literally wanting to throw myself at their feet to beg for something to be done, and you feel so demoralised when you leave without what you believe you need.
At worst, perhaps a private consultation with an endo will be worth it, who can then request the tests and prescriptions on the NHS so may just involve an initial consultation fee. I know gynos like Studd are experts in women's health and fertility but a hormone specialist may know so much more about hormone interactions that may not be being being factored in for someone in your circumstances. Just remember, you have choices, the NHS isn't the be-all and end-all.
-
Hi Tempest
I had my first anaphylaxis at 21years old (I'm 50 October)
No one told me it was anaphylaxis just that I had an allergic reaction, I'd been at my nieces bday party and had tuna sandwiches then washed up using gloves (I always used gloves to wash up but hardly ever ate tuna), they told me I was probably allergic to fish (I'm not a fish eater), they gowned me up ready for tracheotomy as my breathing wasn't good but I did recover and thought no more of it
Weeks later i was back again in A&E with swollen lips after blowing up balloons for my little girl, then again after eating a banana, no one was giving me answers and I became quite scared. My lovely GP back then called me in, she'd been researching the events and said I'm allergic to latex and cross allergens (exotic fruits), the gum used in some wrappers etc, she gave me antihistamines to keep on me
Then whilst away at Yarmouth I had a tatoo, and told the guy not to use latex gloves, so he padded the area but used the gloves, I was back in A&E with anaphylaxis, having breathed in the air borne proteins from the gloves , I ended up with a really bad chest infection within days so now have to have steroids immediately after the adrenaline jabs
Then about a year before peri I started having breathing problems, I'd developed allergy induced asthma (I was 44), the asthma nurse referred me straight to an allergy clinic where the tests showed I'm sensitive even to water !
Anyhow they said I must carry 2x epipens with me and have steroid jab after every anaphylaxis, I also use inhalers
Since peri started (I'm now post) everything has got worse, but I think I've only had one anaphylaxis since to movicol, but nearly every day I get random lip swelling/eye swelling ones to things I don't have a clue about
I'm sensitive to antibiotics but not allergic
Annie x
-
Thank you CLKD and Dangermouse! CLKD, you do NOT want to know how clueless this GP is about VA! It would make you spit!! She said 'oh, it's only a bit of dryness, isn't it'? She's probably in her 30's herself so I'm sitting there thinking 'ohhhh boy! Are YOU in for a surprise one of these days'!
I have to say that I am probably a thousand times worse these days anxiety wise since all of this. One of my most disturbing issues now is waking up with violent shaking in the mornings, and my flushes are worse these past few weeks than they have ever been. I'm assuming this is because my stress is out of control right now? And what makes me saddest of all is that it's now transferred onto Hubby too. He is so worried and frustrated, he is such a good man but he looks really tired and drawn this past week. I keep telling him how sorry I am that he's having to endure this with me, but he's so kind that he says it's really not a problem. He is usually very mild mannered, but when we came out of the GP'S he said 'if someone doesn't do something soon to help you, I'm going to bounce a chair off someones head'! I've never seen him so frustrated, and he's never usually the angry type and certainly not given to acts of violence. Bless his heart. Really.
We're actually discussing Dangermouse where best to spend our money privately. It seems that the nearest private 'Menopause Expert' is actually the guy I've already just seen via the NHS! He practises privately out of the Nuffield here in Glasgow on menopause issues. As I said, I don't have a return appointment with him via the NHS until February of next year! That is unless we can get a return appointment sooner when he gets the message from his secretary and/or my GP.
Other than that, I will start researching Endocrinologists privately. I think this would be a better choice for me, as you say. I definitely feel I'd benefit from having my adrenal function checked too.
Annie0710, would you believe that you have pretty much the same allergen profile as my dentist?!? Yep, it's true! I always feel in very safe hands with him as he knows all about anaphylaxis first hand, poor guy. It's actually amazing how clueless a lot of health care professionals are about it, and I'm so sorry that you had to go through so much trauma and anxiety finding out the hard way what had actually happened to you and what your triggers are. I had a biphasic reaction to start to Trimethoprim (now you can see why I'm so anxious about not getting VA related UTI'S)! I was referred to the Anaphylaxis Service at the Western Infirmary in Glasgow, and it was discovered that pretty much any drug that causes histamine release could potentially put me into shock. Estrogen via HRT is also a worry too as sudden high rises in Estrogen can cause histamine release, I was warned. So much anxiety causing stuff going on! Aaaargh!!! My BSO surgery was a worry too, as we couldn't use Morphine at all, so had to rely on bolus injections of Fentanyl inter and post operatively which are very short acting and very tricky to judge. Thank goodness the anaesthetist was simply marvellous! I remember he said 'would you mind if I have a few students in theatre? You'll see them when you come in to prep'. I said, no not at all. When I got there, there was about 8 of them! One young guy admitted that they were there as it may be a chance to see how anaphylaxis is handled during anaesthetic, and I was like 'ok. Now I'm REALLY nervous'! I was ok totally with it though, as although I was very anxious that it didn't happen obviously and the anaesthetist was thorough in planning my drugs, I figured that if it did then this was going to be a valuable experience for them to take away that could save a life. Thankfully it didn't happen though! Phew! And yes, I always pack 2 epi pens too. A lot of folk are not up with the guidelines (mainly GP'S - grrrr), that 2 should be carried in case of product failure or biphasic reaction. I must admit I never order both pens at once so that they're not from the same batch in case of product failure that may include the whole batch. I also register mine with the website so that I get an alert on my phone ahead of when they expire so that I can order in plenty of time. It's always good when a pen expires and you haven't had to use it, isn't it?
-
Hi Tempest
You know, I've never actually used one at all !!! I'm too scared, how stupid is that ??? I've never called an ambulance either !
Last year they kept me in overnight (I'm usually allowed home after about 4 hrs and always very sleepy for a day after) but they were worried I'd have another as things weren't settling like they usually do , my legs were bouncing up and down on the bed, everything was going weird, I'd never had that before. They said always have the 2x epipens as I'll probably need the 2nd one about 10 mins after the first one and next time dial 999 after the jab
When I had my hysterectomy back in '99 they had to order in all latex free equipment including the operating bed, how bad is that? I'd had ops there between diagnosis and hyster and they'd used latex equipment and there's no way I'm the only latex allergic patient in our town !
But back to you, your story has been on my mind, I think you're so brave what you've been dealt with and I really hope you find someone who can get you feeling better
Hugs
Annie x
-
Oh how difficult for you both :o and you both seem so calm in your responses here.
I expect DH is frustrated, he sounds of similar temperament to my own ::) in that nothing fazes him and to see him irritated is quite something!
I do wonder why the Consultant wants to wait until Feb. B4 seeing you ? Maybe I missed that along the way :D
Night night, keep posting!
-
Oh, Annie! You're a wee soul. Seriously, you NEED to use your pen if you even suspect a reaction. It's vitally important. I know.....it's scary! Did they give you a trainer pen? It's a dummy model without the 'sharp' so that you can have a go at practising how to use it (how much pressure to use and technique, etc). If you would like mine, you only have to say! It might make you feel a wee bit more confident. I'm sending you a big hug, your kind words are lovely. Thank you! xxxx
Oh, CLKD! Your hubby sounds like a fine man too! I've read some of your posts before where you mention him. I'm so glad that we both have good 'uns! ;)
This Menopause Consultant is actually a 'jobber' who does it as a sideline to his specialty in Urogynaecology. I'm thankful that we have SOMETHING available at least, but this clinic is vastly over subscribed and under staffed (the same old, same old)! I was a bit surprised when he said return in 6 months even before all this kerfuffle unfolded, as I assumed he would want to check up on whether I was doing well at the 3 month mark to see if I needed a change in dose or type of HRT. As I said before, my GP is woefully clueless and absolutely washes her hands if there is a Consultant involved. We actually had to push her to get in contact with him after all this, to which she replied 'welllll, I'll TRY next week'. I hate to be pessimistic but it seems ever likely that Hubby and I are going to have to crack open the piggy bank and go private. Saying that, if anyone has any specific knowledge of anyone who could help in the private sector who is based in Scotland, that would be marvellous. I really would prefer to see someone face to face this time, as the Professor Stuff email thing didn't really work out too well.
-
Sounds like a letter to the BMA if your GP is loathe to refer patients :sigh:
Going private can be useful. I was covered for several years by the Insurance which was part of Himself's salary ….. at the least it meant less waiting times! Do you have a BUPA hospital close by :-\ or maybe contact them to see where your nearest requirement might be in Practice? [if that makes sense :-\ ]
-
As I understand it, CLKD I think I read somewhere that GP'S are actually being paid incentives to NOT refer these days! (Or maybe this is a Scotland only thing, seeing as we are devolved with our NHS). All I know is its a blinkin' mess! We also have the situation where only in extremely exceptional cases will GP's refer out with of your own local health board. This means that if there is a specialist even just 30 miles away, I can't get to see him or her.
Yes, we do have a couple of private options. 3, actually! We also have Spire Healthcare in Edinburgh and they are excellent as I had my spinal surgery there in 2008. Fantastic service and aftercare! I must go and search their specialists directory too.
-
People have paid into the NHS so it isn't in my view ethical for GPs to refuse referral, however, each referral comes out of the budget!
Patients have been given choices as to where they get their treatments 'down here'.
Let us know what you find out!
-
Dr Currie is based in Dumfries but maybe only NHS? The Scottish ones are listed here:
http://www.menopausematters.co.uk/clinicsearchresults.php?region=scotland
Can't remember where you are? Looks like there are several in Glasgow but I expect all the NHS ones will have a fairly lengthy wait. Some may do private consultations as well.
Hurdity x
-
Bless you Tempest, I have watched YouTube videos on using the epipens and may look into the dummy ones, the Allergy Specialist had one and took time to teach other half and myself how to use it, but unfortunately I have the memory of a fish so unless I'm doing things on a daily basis I forget them
Good luck on your search for a specialist, I think you deserve cracking open the piggy bank to get quick treatment, hopefully then they could prescribe you on Nhs
Annie X
-
Don't you jab it into the thigh region, it goes through clothing from what I remember :-\ - if you really required it, you would use it ;)
-
Yes to all what you say CLKD
There's instructions on it too, but I just remember that last anaphylaxis my train of thought went out the window, my adult son was asleep and other half wasn't home and thought I'd drive to A&E, luckily OH arrived home and I went out to him to take me, and I live 5 mins from the hospital
-
Fortunately, I live just 5 minutes from the hospital too, Annie. :)
Whatever you do though, please NEVER attempt to drive yourself to the hospital if you become symptomatic. Really, call an ambulance. They are never going to get cross if it's possible anaphylaxis. The protocol is usually inject (even if symptoms seem quite mild to you), dial 999, give your details and immediately tell call handler 'anaphylaxis'. Don't even say 'suspected' or 'im not sure'. Delay at best just makes the paramedics job harder, at worse.......well, I don't need to say. They can also start giving you IV fluids too which helps to stabilise you faster, and also a wee IV of steroid. I know it's scary, but it IS an emergency and this is the kind of thing that the 'blue light is there for.
CLKD, yes you are right that you can indeed inject through light clothing. I would never chance it though. Even if I was in public, I'd whip my trews down and stab my thigh without a second thought. I guess it's because I had a near fatal biphasic that I'm never going to take that chance!! And you need to keep the injector in for a slow count of 10 and rub the thigh area to aid absorption too.
-
Tempest, sorry if I'm being thick here but what exactly did happen after your email consultation with Professor Studd? I got a little confused about the outcome with your doctor and the prescription.
Definitely don't hang around waiting for the NHS to act, you need to take control of the situation yourself and find your own specialist. Yes, it means paying but this is impacting your entire life and stopping you from functioning properly.
You may need to see several specialists before you finally get to the bottom of this.
-
I had to turn the page back to see what I'd written ::)
Let us know how you get on!
-
Hi, Mary G.
Yes, let me explain a little better what happened with my email consultation with Professor Studd.
I initially spoke to his secretary, who suggested I send an email detailing my history and symptoms. This I did, and didn't hear anything for a couple of weeks. I emailed in again, and Professor Studd agreed to send a prescription out to me. There was no back and forth 'consultation', however I was very pleased and relieved at the time that he was prepared to help at a distance.
I received the RX in the mail, and he had written me up for a regime of Estrogel, Utrogestan and Testim despite me being very clear that I'd had a total abdominal hysterectomy as well as bilateral salpingo oopherectomy. I was sure this was a mistake, so I phoned his secretary who confirmed that yes, this was an error and to cross out the Utrogestan. Professor Studd did state that I could take the RX to either a pharmacy to be filled as a private prescription, or take it to my GP.
I sat there looking at the RX, which I have to say looked very hastily scribbled and the secretary admitted that there were two different sets of handwriting on it as Professor Studd had not put my details on it and she had had to fill those in. To be honest, I just didn't feel very confident about it all (I had planned to take it to my GP so that she had a record due to my serious allergy profile). It looked kind of too 'shoddy', and I knew my GP would query it. As I had by then received a consultation date with Dr. Mahesh Perera at Stobhill Hospital and it was only a short while until I was to see him, I decided not to take my dealings with Professor Studd any further.
I wish I could actually scan in the RX to show you, as I was very surprised by it all I have to say.
Dr. Perera's clinic is listed in the MM directory and he is a member of the BMS and knows Dr Currie as a colleague and speaks very highly of this forum. Unfortunately, his clinic is extremely oversubscribed so I am hoping given recent events that he will respond to the email his secretary has sent to him when he returns from holiday, and that my GP will add to this. My GP has now asked me to phone her this coming Wednesday between 1 and 3 if I haven't heard from her before for an update. I will keep on pushing, and in the meantime I am researching other options but as I said before, Dr. Perera is actually pretty much the only private menopause consultant I have found at present here in Scotland, as well as working with the NHS. He consults privately out of the BMI Ross Hall hospital here in matters of menopause. Failing that, I shall continue to research Endocrinologists privately too.
I did also make enquiries at one stage to see if Dr. Annie Evans would be prepared to consult at distance, and she was very charming but told me that she is now in fact in the process of retiring!
I should add that I have problems travelling as I care for my adult son, who is autistic. He does not travel well over distance, and does not cope well if I'm away for any period (and I would need to be away overnight as travelling from Scotland).
-
Thanks for the update!
What support do you and your son have? I hated any change of routine but autism hadn't been considered in the mid-1950s ::) but even now, changes in routine = anxiety and irritability. Whilst growing up I was aware that once I got into motion the anxiety would go, i.e. I don't remember being unduly worried by going on stage ::) but now I have no-where to channel the anxiety surges :sigh:
Sorry I digress :-X
-
I think there could be a little bit if autism in all of us, CLKD! :)
My son is actually very high functioning AS. He specifically has Semantic Pragmatic Disorder and has managed to complete an Engineering degree, but on an emotional and 'life skills' level, he doesn't cope at all well. It's kinda tough being menopausal around him as I have to hide a lot of it when he's around as he picks up on emotions very easily now as he has had to learn to 'read' people's emotions as opposed to this just being an organic part of his development. Things of an emotional nature throw him very easily! This in turn then triggers his 'autistic' behaviours such as needing order more intensely.
As he's now an adult, pretty much any support outwith of education has dried up, and in any case my DS hates a lot of fuss and strangers so we just try to get along as best as we can the 3 of us.
I didn't realise you used to 'tread the boards', CLKD! How marvellous!! I'd love to know more about your adventures as a thespian. :veil:
(Yes, I know that's a belly dancer, but it's the nearest emoji they had. Unless there is something you want to tell us)..... ;D
-
:rofl:
I was in several School Shows, I played various instruments whilst growing up and was advised to go to the Royal College of Music - but I'm too lazy and fell in love instead ;D. I continued with various stage shows until I was mid-20s and don't remember the anxiety about it that I suffer now. I would never consider applying for parts these days, also, being meno-brain, wouldn't remember the scripts anyway ::). Loved it at the time especially some of the costumes.
Well done DS! I too hated if my parents were upset about anything, really shook me emotionally = nausea. A raised voice even now can trigger anxiety :sigh: ………
I worked in a secretarial/support role for a few years for the NAS ::). I also can't add up or take away, which probably has along name :D
-
I think there could be a little bit if autism in all of us, CLKD! :)
Things of an emotional nature throw him very easily! This in turn then triggers his 'autistic' behaviours such as needing order more intensely.
This has struck a chord with me Tempest, not wishing to detract from what you have said about your son.
For certain when I am emotionally challenged I crave order and can become quite OCD until I feel the world has stopped rocking. I have always thought that I am 'wrong'' in some way but I am learning now that I am just me :)
-
Tempest, thanks that is much clearer now. So you have had a full hysterectomy including removal of ovaries, how long ago was that and have you ever been prescribed testosterone? When did Professor Studd write the prescription (has it expired?) and how many pumps of gel did he prescribe?
It would appear that there was a misunderstanding because you should not have been prescribed Utrogestan, you don't need it. If you feel desperate and would like to try it, there is no reason why you can't take the prescription to a pharmacy and purchase the Oestrogel and Testim from them but obviously you don't need to buy the Utrogestan.
Under the circumstances and provided you are not allergic to the gel, would it be worth a try? At least if you try it, you will know whether or not it works and if not, then you can rule it out in future. Obviously you don't need to rush into any decision now but it might be worth bearing in mind.
-
Thank you, Mary G. I had my TAH when I was 36, and my ovaries kept chugging along until I was 44, and then I entered peri. I had my BSO last April aged 46, and this has been my first attempt at HRT.
Tbh, after my recent 'do', I want to hold fast until I can get some specialist input. I'm still very shaken by it all, and am trying to bring my stress down a good bit too, although obviously the hot flushes and night sweats are dragging me down too so ideally starting HRT asap would be beneficial. I've also just upped my antihistamine prescription again too in case there was an allergic element to what happened. I had actually reduced it below the level that I was advised by my Anaphylaxis Consultant, and probably shouldn't have done! It is known that ERT raises histamine levels , and as I have a huge problem with this in relation to medications I think it wise I err on the side of caution for now.
-
Oh blimey!!! Please talk me down, ladies if you can. Having a rotten day today with gnawing feelings of doom and anxiety after a good day yesterday.
I've got so much stuff going on in my head today as we approach the new week, and I'm really stressing about it all. I'm thinking a lot about whether my GP is actually going to do anything regarding chasing the Consultant, and also re-running over in my head about when I saw her last week, and how I didn't feel good about some of the things she said during the appointment. Things such as 'I MIGHT let you use the Ovestin that the Consultant has prescribed you', even though she knows I am getting very dry and terribly sore down below. Her reasoning was 'well, we don't want another episode with HRT like the one you've just had, do we'? Also, when i tried to speak about another HRT, she said 'I think you need to slow down, don't you'? I really think she is treating me like a naughty child. She also said that as I 'had already tried two, I'd give up'!!!! I had to correct her and tell her no, actually I had only tried the Estrogel.
I don't think she understands how going through peri for 3 years, and surgical menopause for over a year without HRT has impacted on me mentally and physically. She also kept referencing that I should now 'work with mental health services and concentrate on that'.
And that leads me onto my next worry. I didn't mention last week, but the 'support worker' who came was not what I was expecting. She was 19. I know this, because she told me as her phone kept ringing whilst she was in my home, and it was a bridal shop asking her about fittings for a bridesmaid's dress. She actually spent most of the time telling me how she is going to be a bridesmaid for the first time at 19! She seemed very inexperienced and nervous, and I knew for sure she was a 'rookie' when the CMHT phoned her to ask if she was ok. She said they were checking on her as this was one of her first home visits. She wants to come again this Thursday. I don't want her to!
It's all making me feel a bit hopeless, I have to admit. I've tried staying chipper, but it's grinding away at me as we approach the working week again.
I also flat out refuse to take the Zopiclone that the GP prescribed for sleep - the increase in my antihistamine has actually helped me to sleep a little better, but it's not great. And I also don't want to take any more diazepam. I am thoroughly fed up of just being constantly sedated.
Sorry for the moans and groans, ladies.
-
You moan away. I would be tempted to see this young girl as arranged and tell her on arrival that her mobile phone remains in her car! ;) . I would also ask if the mobile if provided by the NHS to be used in work time or whether it is her own. For goodness sake, we managed without mobiles :cuss:
Mum had this problem with 'carers' that visited Dad in his last few months, they would keep answering their phones, well in this house, that doesn't happen! "You are here to see me and not carry on with private conversations", should put her 'right', in fact in your case, I would be reporting this private use to her Supervisor. I don't go with the 'they need to contact me at all times' as she can ring in between clients from her vehicle!!!
No one can concentrate on providing a 'service' which is why they are visiting with clients, if they have one ear not the phone. So you are quite entitled to nip this in the bud: your home, your Rules!
Are you able to change your GP, you may have already said but meno-brain here ::). Is there a Practice Nurse that you could talk to about your symptoms. I would be phoning the Consultant during the week to explain that his advice has been refused, "where do I go for help next?".
I would be inclined to go back and say "I might like to try Ovestin if I could find a GP who would prescribe what the Consultant suggested", GPs forget that they are GPs because they weren't clever enough to become Consultants :bang:
If I get a few nights without good quality sleep I use anti-histamines or sea sickness tablets ;-).
-
Thank you, CLKD! I know I shouldn't let age be a factor, but honestly. When I mentioned to the young lady that I was experiencing surgically induced menopause and couldn't sleep mainly because of night sweats, she just looked uncomfortable. And then a bit bored. I don't think she could get out of here fast enough! She was also half an hour late (which isn't unusual for NHS home visiting staff, so I've been told). But this left her exactly 20 minutes to speak to me AND head back to the office at the end of the day. I could tell her mind wasn't really on the job (especially with her phone going it's dinger)!!
Oh, this GP has a diploma in Obstetrics and Gynaecology, and says she is 'up on women's issues'. She is also pretty young. I think she thinks we ladies of menopausal age are all just whining crazy old bats looking for a last stab at youth! She also kept saying that 'the menopause for you, is probably nearly over anyway'. Hubby's face was a bit puce when we left! Even he knows from his covert visits to MM that this is not true. He's really good, that lad! It really is shocking how clueless GP's are about menopause! >:(
-
Her Obs and Gynae Diploma is that, a piece of paper. Unless she takes an interest in womens' problems, it ain't going to do her any good except a bit more money in her wage packet! Her time will come :P
Tell her, "You are no where near 'up' on my problems so listen carefully, I will say this only once" - bet she wouldn't get that either ::) ;) (or does that date me ).
-
My heart really goes out to you Tempest, if anyone needs help and needs it quick, it's you
And I totally agree with your concerns, I wish we could have all our consults with women older than us who've had a crappy menopause or at least professionals who know someone close to them who has, I think the offers of help would be with us
I see a well woman nurse now, she's testing me for testosterone but is governed by a team of gps and none of them know me, and they move the goal post each time I get close to testing
Would these gps leave their wives be with zero libido ? I think not lol
I doubt they'd be happy leaving the surgery and their meno wife hadn't cooked dinner, and her hairs a mess because she's got no energy and the house is a tip
You fight for your rights, you've been hit hard by hrt giving you this reaction , it's not fair you're not being given a chance of trying something else
And your anxiety ? I think most of us would be feeling anxious in your situation so don't beat yourself up, you're still normal but with a scary episode you're still coming to terms with
Sending you a big sloppy smacked of a kiss
Annie X
-
So just after tea, I'm sorry to say I had a huge meltdown emotionally. Hubby insisted I phone the out of hours psych. team for a bit of support. I spoke to a very nice man called Tam, who I have to say really listened and took everything on board.
After listening to me blubbing for over an hour, he said that in his opinion I was suffering from complete mental exhaustion and that he didn't think I should 'keep getting bunted on mental health as I clearly have physiological issues that are impacting me very badly mentally'. Now HE gets it!!! So WHY can't my GP grasp this? He said he was so sorry that he couldn't do anything really to help, but he said he was going to email my GP to tell her about our discussion, and that my physical issues are now impacting on me very badly mentally. And that in his assessment, he thinks this needs addressing urgently to prevent a serious mental health crisis. He is also emailing the psychiatrist I saw to tell them this too.
I told him that despite trying everything including diazepam, I just can't get any sleep as it's interrupted by the severe night sweats and I have to get up to change sheets and night clothes and to go to the toilet frequently due to urinary urgency. I am struggling to walk as I've developed excruciating pain in my left hip and knee joints that painkillers just won't touch. I even told him that I'm now almost unable to bear even any water on my bits down below as they are red raw (showering today was a nightmare)! And the constant, constant anxiety and sudden terrifying 'feelings of doom' that can last for hours on end.
I also told him that I didn't want to use Zopiclone, and he was able to check that I'd been prescribed it and commented 'good grief! Your GP has prescribed 10mg! It's usually 3.75mg in someone who uses it occasionally. If you had to get up in the night on that, I'd be seriously worried about the risk of a fall'!
I also told him that I have been thinking about suicide, as I really don't have any quality of life now and feel as if I am just 'existing' although I have tried to 'put a brave face on it' recently, my thoughts are becoming darker and I can't bear to think of living like this much longer.
He also said that if I don't get anywhere soon with some help from my GP apart from being parked on sedatives, that I am entitled to ask for a second opinion. And that I can call them anytime if I feel desperate in the night and that they can even do a home visit if I need one.
I apologised to him for putting all my problems onto mental health services, but he said it was no problem and that he thinks I desperately need someone to take responsibility for sorting my hormonal issues out, as well as psychological support as I am now so low.
I really wish I could just pull myself together somehow, as I have read so many stories on MM of women who are having a much tougher time than me. I just don't get it. I thought I was stronger than this! I never believed that this could bring me so low emotionally and physically. If I found some hope somehow, I could muster and try to carry on but I've been asking for help now for 17 months and like the guy on the phone said 'you be just been going around in circles and getting nowhere'.
-
Stop! You are what you are. Your problems are yours, in your face all the while. Don't think that anyone is 'worse off' than you are! These feelings are what you are dealing with. Do you feel like dying or do you want to sleep until it is sorted? That was what I felt, I wanted to 'sleep until the pain went away' because depression 4 me was physical as well as mentally tiring. As well as being scary!
If you could pull yourself together you would do so - put that out of your list of wants immediately ;). If you had 'flu or had broken a limb ………. the guy to whom you spoke earlier is right, trying to find help and advice is tiring :sigh:. I used to think that tomorrow would be better so that I became lower and lower; now I know that once I start that spiral that I MUST contact my GP or up my AD dosage for 7-10 days. Now that I am 'better' I am more aware of my brain's requirements ::) so supporting that area up there: out of sight : is important.
Worrying about not sleeping makes it a vicious circle. What bed-time routine do you have? I find that my bubble bath with Very Good Book and a cuppa helps, on the nights that I don't drop off I do crosswords or read. Relaxation therapy helped years ago as did having the radio on low in the night. My mind would whizz with all the chores waiting to be done ::) but I didn't want to disturb the household by getting up to do them ……
:bighug: this too will pass. Sometimes 'existing' is a way of the brain shutting down to get some rest, I would spend hours each afternoon dozing on the settee, at the time I felt that I was wasting time but in retrospect, it was my body telling me to *rest*! I really believed that I would never go shopping again; would never go for long walks with Himself; would never look forwards to stuff - but gradually I improved. Now I take half a day at a time, I try not to look too far ahead or my anxiety levels rise - if I have to plan ahead I do so earlier so that I get a few days respite between planning and having to attend what ever it is!
Your GP doesn't get it because he ain't listening!!!!
-
Tempest you desperately need to replenish the hormones you are missing, in the early days I thought I had dementia, with all my new symptoms I didn't like the thought of living to an old age, I had the b12 issue going on too but also my own hormones were being a complete bitch to me too, not sure whether they still are or I am becoming numb to them, possibly a bit of both and I'm nowhere near where I want to be ailment-wise
This is 2016 and so totally wrong that you are suffering like this
Thank god you have your team to call on to reassure you that you are not going mad, keep reminding yourself that hormones are doing this to you honey
Annie X
-
Thank you, thank you, thank you. Not just from me, CLKD and Annie but from Hubby too. I have just read your replies to him too. Your sage words and advice are helping both of us so very much. I think CLKD, that I just need to 'exist' for a little while longer. What you said there really struck a chord - I think this is my brain telling me that I need to rest, and slow down so that I can regroup myself again. The guy on the phone said 'I can really hear the exhaustion and despair in your voice. That's why I'm going to take some time when we get off the phone to put together a couple of emails'.
The Out Of Hours Psych Team are actually not my direct area as they are in Glasgow, but I've phoned them twice now and I have to say they are absolutely marvellous. The last time they did do what they said they were going to do, so I'm keeping my fingers crossed. I spoke to some of the other patients about this when I was in hospital, and they all said that they are much better and have better trained CPN's than our local CMHT. The guy did say that he and his colleagues are not just 'desk CPN's', and have all worked for years as psychiatric nurses in hospitals before moving into their current positions. I think this counts for a lot. I definitely found the psychiatric nurses in the hospital I was in very briefly were much more tuned in to the patients than the CPN's I've come across at our CMHT so far (with the exception of the IHTT, who are all ex. hospital psychiatric nurses too). There seems to be a 'fast track' to the role of CPN these days which can be conversion training from social work with no psychiatric hospital nursing experience, at least here in Scotland. They now use the umbrella of 'key worker', which means that us as patients are never sure if we are actually getting a qualified psychiatric nurse who has experience, or someone who is actually just completed conversion training to move from a social work role. I think this is pretty worrying, personally.
Annie, yes! I know exactly what you're saying about feeling like I'm succumbing to early dementia sometimes. I definitely feel at the moment that I'm not steering this ship anymore. I'll keep trying to remind myself that the lack of hormones is what is making me feel so low and depleted. I think this is what those terrible 'doom feeling's are - running on a totally empty tank. The only hormone levels I got done were about 7 weeks into the Estrogel on 2 pumps and that was estrogen 125, and my testosterone was 0.6. I dread to think what my estrogen is now.......
Much love and many, many thanks to both of you for your kindness. It really does mean a lot. xxxxx
-
Hi Tempest
Some of the words you mentioned struck a chord with me. I felt I existed and went from day to day in a numb like state. I worried because I felt nothing. No happiness, no fun, no motivation, no energy, in fact just totally apathy but engulfing fear about what was happening to me. But the worst was despair and terror that my thoughts created, it was awful.
My oestrogen levels were about 126 when I started the oestrogel. are you going to request these are done again?
All I can say is hold on in there, I'm still here! Think the oestrogen patch and an antidepressant has helped, but more importantly being on here gives you so much support so you know your not alone. I know it's hard, but keep on hammering on those doors of gp's or gyny's until you get what you need. I had to do the same it's hard and disheartening but you will get there one day at a time. As CLKD once said to me, "baby steps".
You've been through a terrible ordeal, but when things get bad, there's only one way to go.... That's how I felt anyway.
Take care xxxx
-
By the way, I get really annoyed by "professionals" who are in their 20's! I'm 45 but I always feel like I want someone with real life experience not fresh out of college.
-
Sorry Tempest, one more thing. Last year, I was prescribed Diazepam and although I found it made me stop thinking and calmed me down, it also made me feel very very flat, down and despondent. It also has a very long half like and it stays in your body for about 20 days. Maybe it's a side effect of the Diazepam that's contributing to how you feel right now too.
All I know is that I didn't want to die, but couldn't live as I was either if that makes sense but couldn't figure out how I was going to get better either.
On a good day, I went to see my GP and got my ferritin/iron and vitamin d checked, both were low so started treatment. Then also started HRT too.
-
Tempest, Ive just been reading through your posts again and I certainly would not be having a health professional sitting in my home on a consultative basis taking calls about personal issues. Its totally unprofessional and also extememly rude . Would you walk into her office or your GP's and start accepting calls on your mobile ?? I don't think so. I'm afraid I would be speaking to her manager. Regardless of her age, she obviously has no idea how to interact with vulnerable patients. Ive never heard anything as bad as this to be honest. I have lots of health professionals in my family, and the idea of any of them using a mobile whilst working beggars belief. Perhaps, at break time or between consults but to do it in front of the patient??? Also, the fact these key workers as they are now described, have no previous psychiatric experience in a hospital acute setting is rather concerning too. My friend was a CPN and prior to this was a registered nurse, then did a psychiatric course of 18 months, before working for ten years in a Psychiatic hospital. Even then, she admits it wasn't always straight forward !
I am so glad you had a positive experience with your Psych team, thank goodness they were on the ball.
I sincerely hope you get your appointment with the menopause specialist soon, and as for the GP, are there any others you could see in the practice? I think sometimes an opportunity to speak to someone not so familiar with your history can actually be an advantage as they listen more attentively. Over familiarisation can cause them just to block out what they feel they already know !
Sending positive and loving vibes.
-
Tempest, I've been following your thread and just send out heartfelt hugs to you. I was in a bad place from January to almost June. Couldn't find help basically and had no support at home. I don't know how I got through it but I did, not for the first time either. Okay, I'm still battling terrible HA all the time and I've loads of 'worrying' symptoms but at least we can all share on here and get some help from all the lovely ladies on here. I'm sure it will all work out for you and that' it will pass' as CLKD says. At least you have a wonderful OH by the sounds of it which believe me, makes a huge difference and you are very lucky in that respect so it must be very upsetting for him to know that you don't want to be here any more, he needs you as much as you need him. xx
-
Trying to find advice and support is tiring, at a time when the whole body and brain has run out of steam! I advocate rest as much as you can. Have the radio on in the background, doze if possible …… or sit in the shade and focus on the birds, plants, whatever ………
You may well be in shock still, you, your body and brain have been through a lot recently. The system needs time to recover.
How R U spending the afternoon?
-
Tempest - I am sorry I am unable to offer any help or advice as I have no experience of the psychological side of things/mental health issues, but reading your posts do sound familiar and another member recently was going through exactly the same sort of extremes of feeling that you are - and especially the feelings of despair, connected to her hormones. She is peri-menopausal, and has her womb and ovaries still but nevertheless seemed to express the same emotions - at some parts of her cycle. She hasn't posted for a few weeks - and I'm sure she wouldn't mind my saying who she is as all her posts are on here - but you might not have seen them. She is GypsyRoseLee so perhaps view her profile and read some of her posts. She had several threads.
Wishing you well and take care :foryou:
Hurdity x :)
-
How has today been?