Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tc on February 26, 2019, 09:47:06 AM
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After my visit gynae consultant yesterday I've got more and more angry about the vagifem and her attitude to VA.
Shes given me 12 applicators to last 3 months and put on the prescription use once a week.
I've phoned the secretary and left a message. I am going to complain I'm a absolutely livid.
1. She said I have "moderate to mild VA. (She didn't examine me) Is she waiting for it to get worse before she treats it properly she is wrong. She needs to read up on it and see that its progressive if it goes untreated.
2.she said you shouldn't need topical treatments if on systemic HRT. She is wrong. The guidelines on it say it can be prescribed alongside systemic.
3. She said it would be wrong to prescribe estriol cream for the outside and if I'm going to use vagifem I have to switch to Yes product (because it doesn't cause cancer. Omg I despair.
4. She said I need to do pelvic floor exercises. She said the bladder issue is nothing to do with eastrogen. She said its weak pelvic floor caused by lack of collagen. Crikey I didn't go through medical school but even I know lack of eastrogen causes collagen to weaken.
I argued all these poin ts with her
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Either she doesn't know how to take vagifem which makes her incompetent pr she deliberately gave me not enough to work cos she obviously has issues with the supposed risks of it which if she did is unethical.
I'm effing furious.
Sorry for the rant. It's so frustrating when I know ladies on here find it helps and have been prescribed cream for outside alongside it which also helps and l I'm being denied it.
Is she waiting for my VA to become chronic? Causing me unnecessary pain. I actually feel like crying with anger
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You rant. Maybe send her a copy of Mary Janes "Me and My Menopausal Vagina". I would 'phone the Surgery, speak to the Practice Manager and ask for hard copy of where the GP gets her information from. One cannot over-dose on oestrogen vaginally as any excess will drain out. I too was muttering about this particular attitude as I dropped off to sleep ::).
I have Ovestin but no other HRT. Other ladies use both as well as 'yes' and 'sylc' products. Which Planet might she be on ? :bang:
I'll hold her, you pour cold water over her?
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Don't tempt me CLKD.
It's not GP its consultant gynacologist!!
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What about contacting Dr Currie (costs £30) to see what she advises.
The details are on here under the magazine details:
https://www.menopausematters.co.uk/index.php
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That crossed my mind too Jenna. Sorry TC, not keeping up am I ::)
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I'm getting livid with you. Why no examination? You need more than one a week and a fortnight daily application is always given to start with. Can you talk to your gp? You shouldn't have to pay 30 £ on here to get some sense.
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I don't have VA but I share your anger. My GP is just as ignorant but will at least listen if I make a suggestion. If it was me I would certainly complain, you shouldn't have to put up with it. Plenty of help on google, possibly https://www.which.co.uk/consumer-rights/advice/how-to-complain-if-youre-unhappy-with-your-gp-or-gp-surgery.
Incidentally I have had to do pelvic floor exercises ever since I had my daughter at 42. Still had to do them on oestrogen but since being on testosterone I haven't had to. It's possible it's actually oestrogen that sorted it but just took a long time to work but the timing seems to point to T. Just a suggestion if E doesn't work for you.
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Shes given me 12 applicators to last 3 months
Half a packet :'( :'( :'( :'( :'( :'( :'(
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Yes. Half a packet. Once a week from the outset with no loading dose
The lead consultant examined me 3 months ago and diagnosed it. She didn't say it was mild. I have found the letter. She particularly said the outside area showed atrophy and made a point in the letter that I should also rub the estriol cream on the outside area. The gynae doc I saw yesterday said once a week vagifem will treat the inside and out. She also said you shouldn't actually need it if you are on systemic HRT
I think she didn't want to prescribe it but couldn't refuse and so fobbed me off with a dose which will be ineffectual. I think that's unethical.
I asked to change to vagifem because it's more convenient and I find the large amount of estriol you have to insert internally very messy.
She seems to have ignored the fact that her boss initially prescribed the equivalent dose to vagifem 2 weeks loading and twice a week after of estriol. So SHE didn't think that was too much.
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Birdy. I'm waiting for them to call me back.
I think she has issues with hrt.
It was as if her attitude was "you're 53 what do you expect?". My mum was with me and she agrees. Although she scared the life out of my mum when she kept talking about cancer.
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Send her a letter - you remember snail mail? Recorded delivery. Ask her for up to date information about cancer risks as well as a copy of NICE guidelines ;-). Though she will probably say 'they are guidelines, not written in Stone' >:( >:(
Do ask Dr Currie's advice if you get no where fast! Explain why too. Naming and shaming can't come quickly enough for me. >:(
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Awful. It makes me so angry. Can't your own doctor prescribed it for you? I cannot imagine my life on one of two vagifem a week.
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I would be asking to see a different GP. Maybe speak to a local Pharmacist for advice? Or ring the company directly ......... each box has a leaflet inside, that should be enough for any GP :bang:
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I thought I had come across numpty consultants and GP's but yours is by the far worse :(
I use Vagifem every day plus I am on systemic HRT and I use Ovestin a few times a week on the outer bits to control my VA.
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'numpty' doesn't cover this one ::)
Some hate being challenged. Some simply won't learn :poke2:
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The menopause specialist didn't like it when I questioned him, he wanted me to have a hysterscopy because of, as he put it, my overuse of Vagifem, he said it shouldn't be used long term, I had only been using it for 8 months!
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8 months is no time at all >:( :'(
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'over use' - that brings me back to that bus. You know, the one that will knock you over long B4 HRT gets a grip !
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Ergh, what a joke. Tc, do you mind me asking where you go for your appointments?
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O.k. they've called me back and said that is the way they prescribe it in their clinic.
She will not budge
I wonder if it's because its gynae oncology. Imaybe that's why she doesn't like HRT.
But they are giving ladies once a week vagifem with no loading dose. They might as well be giving a placebo.its not going to work its pointless.
I'm going to complain and I've said I'm not going to start the vagifem if i haven't got enough to do the loading dose awhats the point nd i said you'd better not stop my estriol cream.
It makes no sense. The visit before her boss was happy to give me estriol twice a week. She said the appointment yesterday supercedes what was said in December.
I'm so frustrated I could cry.
This is the clinic which prescribed me 100mg per day of ulipristall (which,is taken max dose 5mg or 30mg as morning after pill) instead of utrogestan. I've got that in writing as well.
I need to get a second opinion. If it's because they are oncology they wont prescribe the vagifem in the correct way then I need to be at a different clinic.
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So I cant start the vagifem. I will have to continue with the estriol. I just pray she doesn'tt stop that in her letter to gp.
I've booked an appointment with my gp and I'm going to ask to be referred elsewhere. I don't see the point in going back to that clinic (it's at my local hospital).
And im going to formally complain.
I've emailed the makers of vagifem. I asked if it would be effective if I skipped the loading dose and just used it once a week.
If it's TRUE that they only prescribe it like that in the clinic I feel so upset that there are ladies out there who have VA and are wondering why their symptoms are not getting better on 1 vagifem per week. It takes 2 weeks of daily doses to re-estregonize the vagina. They are being mislead that their VA is being treated and they might get worse and suffer in silence
Omg. I dont think I've been this angry in a long time!! Maybe it's a good sign.
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This is beyond fighting. We will use a lot of energy between us >:(.
I think that Dr Currie should know your problems. Hopefully the Company will come back with positive news also what does the leaflet in the box suggest?
:rant: ...........
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Sorry to hear about this Tc - how frustrating for you. From my knowledge of how it works I would suggest you don;t need to do a re-laod with Vagifem. After all both products work by increasing the maturation of the vaginal tissues, and lowering the ph of the vagina (in a nutshell) which in your case is being achieved through estriol ( which is acting to do this mainly through different oestrogen receptors than estradiol). Therefore if you feel that your VA at the moment is controlled, then in your position I would switch straight to maintenance dose of twice a week.
It quite clearly says on the emc website ( electronic Medicines Compendium) which "contains up to date, easily accessible information about medicines licensed for use in the UK" that the maintenance dose is twice a week so although you have written to the manufacturer - this should not be necessary as your gynae clearly is not following these.
Here they are:
https://www.medicines.org.uk/emc/product/5719/smpc
"Initial dose: One vaginal tablet daily for two weeks.
Maintenance dose: One vaginal tablet twice a week."
The dose is already much lower than the discontinued higher dose one (of 25 mcg) so 10 mcg twice a week is an absolute minimum.
Just to remind us though - I am sorry I can't remember what sort of cancer you suffered from? I think your gynae is being very cautious on your behalf? I haven;t read all the thread....
Hurdity x
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So what's to do when medics refuse to treat the person and improve symptoms? Who to complain to?
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I do so wish I had thought to advise you to ask for an Estring. This delivers 7.5 mcg estradiol over 24 hours and stays in place for 2-3 months. Thus, it is the equivalent of about five Vagifem per week, saving a lot of b*gg*ring about with ignorant medics who want to mess with your prescriptions.
I am as dumbfounded as the rest of the members over your one Vagifem a week. Good luck with your complaint and hope you can get a second opinion, no reason why not.
AAARRRGGGHHH :hotflash:
JP x
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Thank you joaniepat.
Hurdity. I had a tumour on ovary which turned out to be a non cancerous dermoid. They did a pelvic wash during the OP. So 2 weeks after the op when I went back they knew the biopsy result was benign and the wash showed no cancerous cells. I was lucky I didn't have cancer but they knew this months ago. I dont know why they've got me taking up an oncology appointment now anyway.
My mum who was with me said she gets the feeling because of what they are dealing with everyday they maybe dont have much sympathy for what they see as trivial in comparison.
I think that really came across yesterday.
It's not the right place to treat me. Free up an oncology space and send me somewhere more appropriate and I've said this to them. It's not logical.
I haven't felt the cream has helped all that much on the inside. I feel it's got worse inside but I might have been even worse without it. I've not been able to get down to less than every other night.
Even if I skip the loading dose of vagifem she has only prescribed 12 doses for 12 weeks and will not prescribe any more. So I dont see how I can switch over to once a week product.its not worth it.
She didn't want me to use estriol on the outside either so I'm only hoping she hasn't stopped that. I told the secretary I'm not going to start the vagifem as I dont believe it was an effective dose and so they'd better not stop my estriol.
It really doesnt make sense that the same clinic were happy for me to be on estriol twice weekly but not vagifem.
Thank you for the link.
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I am starting to wonder if:
A) there is something wrong with Vagifem that the doctors know but aren't allowed to tell us
or
B) 'old' women' are useless so let's not spend any money on them
Bare in mind I am very new to this and not generally a conspiracy theorist
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I would guess b!
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No one can explain to me what 'old' actually signifies, like when does one become old :-\. Insurance Companies; GPs; friends .......... it's a number and one can feel old first thing in the morning but those feelings go off after a while. If I was asked at breakfast how old I think I am I would say 90 then as the day goes on .......... ::)
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Katymac. So true.
This particular doc is 30 if shes a day. I do think her attitude might be different if I was younger. She kept mentioning my age and I definitely got feeling she thinks I should let nature take its course
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How unhelpful of her to keep mentioning your age. She won't be so keen on natures course when she's 60 with a sore vagina.
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She wont. And I bet shell want to use vagifem more than once a week!!
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I remember my grandad going to see the GP becasue he was struggling with his golf game (in his late 70s)
He said he was having a problem with his knee - the GP said "Well Mr Mac, you have to expect some wear & tear at your age" My grandad replied "well the other one is the same age and it's fine....." so a referral to a specialist
It's different for men!
Every appointment is a battlefield!
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This makes me 😡😡😡 I Amon twitter quite a lot as I have gone very public with my VA, I also have a very noisy gynae on twitter who is 🤦♀️about this kind of attitude. ( she's a medico legal gynae also).
Can I use extracts of your conversation please to hopefully get a conversation going ? It's no different to here a “public†place but anonymous unless me 🙄.
Using vagifem twice a WEEK is the equivalent to ONE HRT pill a year I say no more as it's been said.
Also how doesn't she know you don't have lichen sclerosus? These doctors with x-ray eyes are 👍 amazing. 🤦♀️🙄😫
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Read this it's called The Montgomery ruling.
https://rcpsg.ac.uk/college/influencing-healthcare/policy/consent/the-montgomery-case
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Interesting link. Thank you maryjane.
Yes you may use quotes anonymously hope it helps raise awareness. Be interesting to see what the qynae on Twitter thinks. Here's a summary of how I see the issue
My doc says that's the way they use it in her clinic . Once a week.
Shes is using the "lowest effective dose" reason. . But the manufacturer clearly states twice weekly.
How does she know once a week is an effective dose? Where is her evidence of this?
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.( I wonder if any other clinics prescribe it once a week.ive not heard of it on here)
Her issue which she clearly stated is that she doesnt believe women on systemic HRT should need to take any other form of eastrogen as the systemic E will "sort out" the VA at the right dose.and she stated an ncreased risk of thickening of endometrium and cancer. From the local preparations.
Her thinking is clearly at odds with the NICE guidelines but she knows she cant refuse vagifem (,if there are no contra indications) so she gives it in an ineffective dose. That is highly unethical.
She also wanted to stop estriol for my external VVA. Even though her colleague who examined me 3 months earlier and diagnosed me stated in writing that I should apply some to the outside.area and it has helped.
You know what I find incredible maryjane.?
In this same appointment she was happy for me to increase eastrogel from 4 pumps to 6 pumps a day. 1.5mg of extra estradiol each day absorbed systemically. Yet she freaks out about local vaginal eastrogen with its.very low dose and negligible systemic absorption!!
I will not go back to see her. She is not acting in my best interests and her refusal to prescribe treatment correctly and together with the removal of the estriol cream for the vulva (which has helped me ) will have a negative impact on my VVA condition
. I will ask for a copy of her letter to my GP and see exactly what she has put in it. My GP will not prescribe or change any HRT including dosage without consultants consent and I have made her aware of this so she is making life very difficult for me.
Thanks for your interest and keep up the good work.
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Birdy I wasnt absorbing the eastrogel 4 pumps and symptoms and blood tests backed this up. Today I started on estradot 75 patch . So we will see..
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I remember you saying that birdy. was that when you switched to gel. Your level went up on the eastrogel didn't it?
I do personally feel blood tests can help us to back up what we are telling the doc about our symptoms and like you found with the everol and I found with the gel if the tests show you are not absorbing at all there is no point continuing with a treatment that is t working for you.
I'm on my second day of estradot. Its my 3rd different hrt in 6 months!! Oh dear at this rate I'm going to run out of new options pretty quick!!!
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Oh yes thats right you had the lozenge in between. When I first swapped to eastrogel my flushes came back. Interestingly they were the only symptom the femseven sequi seemed to treat.
I've had terrible sweats last 24 hours but not sure if that's the estradot or the fact that I've come down with some horrible virul lurgy :beaurk:
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Headache, throwing up. Temperature. And such sore chest and throat.
I've got otc stuff. Lucky for me I could stay in bed today and rest my legs are like lead.
Got my cat cuddled up with me. I think its cos I'm like a furnace shes laying close as possible!!
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Are you feeling better now?
Yes cats seem to love it when you take to your bed dont they?
She is company but I wish she could make a cuppa!!
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Update. Ladies.
I emailed womens health concern about my vagifem debacle I just said what I'd been prescribed and that it wasnt the same as the patient leaflet.
I got a reply from a lady whose name I wont mention but I looked her up and she is a well renowned menopause clinician.
She has stated once a week is not enough. She goes on to quote the correct dose and then says
'It sounds like your doctor needs updating"
I knew my consultant was wrong but now I have something in writing. I've also emailed the manufacturer about the efficacy of one dose per week and collected any other info I have found researching it. I have to say I have not found a single pie e of evidence of it being prescribed once a week.
. I dont see how she can defend her position on this unless she has some evidence that one dose a week works which nobody else knows about.
I'm seeing gp Monday to see if I get anywhere as my main concern is being able to start the treatment which I cant at the moment as I dont have enough but I am determined to pursue this with the gynae especially as she has stated that this is how she always prescribes it in her clinic so it's not just me that's being failed by her.
Thought you might like to know.
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Thanks for the update Tc Hopefully your GP will be a little more helpful.
Let us know how you get on
Lanzalover x
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Thank you and happy birthdayxxx
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Update. Ladies.
I emailed womens health concern about my vagifem debacle I just said what I'd been prescribed and that it wasnt the same as the patient leaflet.
I got a reply from a lady whose name I wont mention but I looked her up and she is a well renowned menopause clinician.
She has stated once a week is not enough. She goes on to quote the correct dose and then says
'It sounds like your doctor needs updating"
I knew my consultant was wrong but now I have something in writing. I've also emailed the manufacturer about the efficacy of one dose per week and collected any other info I have found researching it. I have to say I have not found a single pie e of evidence of it being prescribed once a week.
. I dont see how she can defend her position on this unless she has some evidence that one dose a week works which nobody else knows about.
I'm seeing gp Monday to see if I get anywhere as my main concern is being able to start the treatment which I cant at the moment as I dont have enough but I am determined to pursue this with the gynae especially as she has stated that this is how she always prescribes it in her clinic so it's not just me that's being failed by her.
Thought you might like to know.
Hope thus works for you. I have been using Vagifem a mixture of daily and alternate days for 6 months now and it is working well so far.
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Glad to hear it katejo. Long may it continuex
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Well done with your efforts tc, though it's not right you have to do this to get what you need. I think some of these health professionals let power go to their heads. Hope you get what you need.
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Thanks suzyxx
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Hiya ladies. Had my gp appr today . She took one look on her screen at the letter from gynae which read "I've started the patient on vagifem once a week " and started typing a new prescription!! She said it's an incorrect dose and has given me 24 doses to take once a night for two weeks and then every other night!! Phew!!. She also said I can continue with the estriol for outside. I'm so relieved.
I asked about the testogel and she said the consultant hasn't specified a dose just said once a week.. and with the pump that's over 20mg T in one dose so being as the consultant was so unclear she has prescribed me the sachets.
Thank goodness someone knows what they are doing I went in ready to fight my corner but it was so obvious the consultant was wrong I didnt need to.
I'm still so annoyed with that consultant everything she has prescribed has been an issue with me having to sort it out and weeks going by after my consultation before I can start taking what shes prescribed while it all gets put right.
Anyway I actually felt happy to be walking out the chemist with a box of vagifem.amazing what makes me happy these days!!
Thanks to everyone who has replied and been so supportive and helpful with my vagifem battle, especially Maryjane. Xx
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That's great news 👏 At least your GP is a bit clued up, unlike so many ::) Hope you soon feel better on the correct dose.
JP x
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Thank you JPx
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Hiya ladies. Had my gp appr today . She took one look on her screen at the letter from gynae which read "I've started the patient on vagifem once a week " and started typing a new prescription!! She said it's an incorrect dose and has given me 24 doses to take once a night for two weeks and then every other night!! Phew!!. She also said I can continue with the estriol for outside. I'm so relieved.
I asked about the testogel and she said the consultant hasn't specified a dose just said once a week.. and with the pump that's over 20mg T in one dose so being as the consultant was so unclear she has prescribed me the sachets.
Thank goodness someone knows what they are doing I went in ready to fight my corner but it was so obvious the consultant was wrong I didnt need to.
I'm still so annoyed with that consultant everything she has prescribed has been an issue with me having to sort it out and weeks going by after my consultation before I can start taking what shes prescribed while it all gets put right.
Anyway I actually felt happy to be walking out the chemist with a box of vagifem.amazing what makes me happy these days!!
Thanks to everyone who has replied and been so supportive and helpful with my vagifem battle, especially Maryjane. Xx
Really pleased that you have got a better result and a supply of Vagifem at last.
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Thanks katenox
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Really pleased you have it now.
I wouldn't be without the vagifem. I used to use it alternate days and now every 3rd day. It took a long time to get there.
My original prescription said I could double up (in a rather convoluted way ::) ) and I have stuck to that line when I had to change GP. I have never needed 4 a week, but 2 a week is too little.
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Did the GP mention that she will be writing to the Consultant? I would be doing so myself in your position ;)
Now, legs akimbo :whist: .........
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Thank you dhalia I hope I get some good results too. X
Clkd. She didnt say she would write you know how reluctant some doc s can be to criticize others but I am going to put it in writing myself.x
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Really pleased you have got things sorted and hope you improve with the vagifem. Like you say, it's frustrating how these consultants can mess you around and it takes ages to unravel things. All the best and glad your gp was helpful.
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Thanks suzyx
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Don't go in with all guns blazing though, let this be an educational curve ;-)
"I was greatly confused after my appt with you to find that the X was prescribed at once a week. Having been a member of MM and having read the various threads on vaginal atrophy, and after having 'spoken' to the ladies on the Forum, I realised that to be effective, X is required every night for 2 weeks to ease symptoms. Following that advice is ........... "
C whether you get an answer ;)
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Glad all went well. 😊
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Thank you maryjane. And thanks for your interest and support.
I think I'm lucky it was a locum cos my gp had already said they wont change anything prescribed by consultant
The problem here was lack of knowledge combined with sheer bloody mindedness.
I do feel a responsibility though about the fact that other ladies might be taking an ineffective dose because of her and just not know it
X
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Fantastic news Tc - at least one medic knows what they were doing.
CLKD - I would suggest it is never a good idea to use a chat forum (however helpful) as ammunition to criticise a medic especially in this case when all the evidence and information about dosing of Vagifem speaks for itself. I mean the prescribing info is very clear so that's all that needs to be referred to - politely as you say! I know we are helpful on here but women say all sorts of things in forums (I have read absolute rubbish at times!) so could quite possibly be more likely to put their backs up.
Tc I really hope this improves things for you
Hurdity x
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Thanks hurdity. Xx
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One can push the medics towards the Forum ........ every day is a learning curve, particularly for many medics! Those that want to help their patients will read and learn and .........
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I find medics are very wary of anything "online".
I would not have quoted the forum . We know how much valuable info is shared on here but they are very sceptical.
You have to be able to back up what you are saying from recognised sources.
I was very pleased to receive a reply from an eminent menopause specialist associated with the Brit Menopause society about my vagifem issue and I would have used this if I had to
Even so. Not sure how a doc likes being told about another doc's opinion.
I have witnessed two consultants arguing in front of the patient on several occasions with different relatives in hospital and seen the nurses going crazy cos one sets out a plan and the other one changes it the patient is caught in the middle.
They are human. Some are great at their jobs and some are not. My late wife had a consultant who had little patience for the red tape of the NHS and could come across rude, I've seen him, throw the phone across the room and stomp about swearing because he couldn't get what he wanted for his patient, but he was brilliant at his job and always put the patient first
The trouble is in my experience some consultants, not all, but some, let their ego get in the way.
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Oh I've worked with egos ............. ::)