Menopause Matters Forum
General Discussion => New Members => Topic started by: hummingbird on February 14, 2014, 10:13:31 PM
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Hello, I'm new here although I've been reading posts for the past 6 years so feel like I know a lot of you already.
I'm 56 and started having horrendous meno symptoms 6 years ago, the main ones being hot flushes, night sweats, anxiety, depression and repeated uti symptoms.
How I've come this far without topping myself is a miracle :lol: but I have and so has my poor hubby :o
Last November I asked and got a referral to see a urologist re repeated uti's and overactive bladder symptoms. The doc put me on vagifem, everyday for 2 weeks then twice a week. He also gave me tolterodine, 1 daily for the oab. Came off it after a few days as my mouth was so so dry. The vagifem was great, used the whole 3 months supply with great results. No uti symptoms at all It gave me my life back and I finally thought my meno hell was all in the past.........until the vagifem ran out and all my symptoms have come back :'( Appointment yesterday with the urologist and was told I can't have anymore vag because of the risk of breast cancer. He told me to start taking the tolterodine again and that should ease my symptoms!!! I'm not convinced it will as I thought it was just for oab, but my main prob is the horrible pain and misery of uti. I m so fed up and feel like crying. I've seen vagifem advertised on the web but do you think it would be safe for me to get some. Sorry for long post but thanks for listening :)
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WHAT! Ooh I'm so cross for you. I'm no expert but I'm pretty sure the risk of breast cancer with vaginal oestrogen is extremely low nor even nil! I'm off to bed right now but I know someone in the know will be along to reassure you and send you back to GP who will hopefully be more knowledgeable and sympathetic.
Have a hug :hug:
Ariadne xx
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Thank you for your quick reply Ariadne, it means a lot.
I sometimes find it hard to be assertive at GP appointments. Go in with all good intentions, and come out angry with myself for not getting my point across. (Maybe I need a shot of testosterone!)
I would be grateful for any advise on how to approach my GP when asking for a script for vagifem.
Thanks in advance , :)
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Hi Hummingbird,
Well this has brought me out of long time lurking ::) I haven't posted in more than a year or so as nowadays there are so many knowledgeable ladies on here that I generally have nothing to add but the fact that a urologist has denied you Vagifem has outraged me :steamed:
Won't bore you with too much of my history but have had a Lot of problems with UTIs and kidney infections, had 5 severe kidney infections over last 7 years. The last one (6 months ago) took three months to sort out and I am convinced was triggered by the reduction in Vagifem prescribed. Anyway, said I wouldn't bore you :) So my point is that the urologist I saw wasn't fantastic (although not as bad as yours) but I had an operation a couple of years back and so saw a uro-gynae surgeon. He is one of the leading ones in the UK and lectures all over the world. During my last kidney infection my gp (without my knowledge) contacted him and he rang me out of the blue one morning and discussed the problem. He was very irritated by both the reduction in Vagifem prescribed and also by gp's lack of knowledge on the so called risks of using it. He advised me to double up my Vagifem and also wrote a very detailed letter to my gp explaining this and suggesting other methods, eg Estring etc
He practises out of Birmingham Womens Hospital and The Priory and has a double barrelled name, if that helps. Not sure if I should put his name here?
Oh and I nearly forgot, I also have OAB but didn't get on with the medication for it.
Do hope you find a solution to your problems. This forum is full of amazing people with loads of knowledge. Lots of luck.
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Welcome Hummingbird - you will find lots of help on here.
Great post Crescent - lovely to hear from you again!
Taz x :)
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Hi hummingbird :welcomemm:
I'm also outraged at what you have been told re stopping Vagifem - my GP has agreed that it should be given for life. VA will only come back if not treated.
Katy x
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:thankyou: Taz
You sounded just like your old self with your 'gig' postings ;)
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Thank you so much for your replies Ariadne, Crescent, Taz and Katy.
This site is brilliant, don't know what I would have done without it this past few years, it helps so much just knowing I'm not alone in this crazy menopause nightmare !!!
Crescent, I can identify so much with your story, so similar to mine! Kidney infections, uti!s and oab is no fun at all, and what is even more frustrating is the fact that it is so hard to find help within the nhs. It's so often a case of just put up and shut up. I feel like taking a little hammer.......no... A big
hammer with me to any gp or hospital appointments I have as they really don't seem as clued up as myself regarding meno issues :steamed: Ain't it frustrating when you have to diagnose yourself by finding out through sites like this, and then fighting for what you know you need to make you better!!!!
I have decided to make an appointment with my gp to see if she will give me the vagifem, if she refuses would you mind if I private message you for the name of the uro gynae surgeon?
Thanks again everyone for your help. Hope you all have a good weekend :yipi: :yipi:
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Hi Hummingbird,
Fingers crossed your GP will be more up to speed. You could try taking some info from on here to show her/him if they are the sort who will listen
And yes happy to give you any details if needed.
That is what I had to do with GP, I was just given abs constantly until I found out about Vagifem from this forum.
Good luck with appointment
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I'm also outraged and angry on your behalf. My GP has also made worrying noises about Vagifem causing breast AND ovarian cancer. If she stops it I am going to switch doctors.
I also tried tolterwhatsit for OAB and didnt get on with it. I also tried Kentara patches (prescribed by bladder unit at hospital) and they are much gentler on the system. Worth a try at least.
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Thanks for the info about the kentara patches Milliemoo, I will keep that in mind.
Crescent, yes i will print off some stuff from here to show my gp
Will let you know how I went on in a week or so when I have secured an appointment.
Enjoy your evening peeps xx
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Hi,
I have managed to get an appointment to see my gp next Monday to ask if I can have some vagifem. It's really hard keeping cheerful when I look 6 months pregnant, have dreadful uti type pain and have the constant urge to pee!!!
Does anyone know if the tolterodine would ease the discomfort? If I thought it would take away this pain and misery I would put up with horrible dry mouth that it causes me to have.
Thanks
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hummingbird - have you had the bloatedness investigated? This is not typical of VA.
Taz x
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Tolteridine (Sp) helped me with the urgency but I hated the dry mouth side effects, hence Kentara patches.
I also had bloating and still do from time to time. I tend to think it's all part and parcel of the whole reproductive system/digestive system/meno lark. GP sent me for a scan "just in case it's ovarian cancer" (great bedside manner, not) and it was fine so now she reckons it's probably Irritable bowel syndrome (nice to have your bowels match your mood ::) )
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Hi hummingbird
:welcomemm: from me too.
I echo all that's been said about your GP and long term use of Vagifem.
This is taken from the NHS website and is part of the NHS constitution:
“You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.â€
http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx
Here is a recent article by the Chariman of NICE ( National Institute of Health and Care Excellence) who says patients (sadly) need to be more pushy with their doctors (difficult when you are feeling hormonal)
http://www.telegraph.co.uk/health/nhs/10595806/NHS-patients-should-be-pushy-with-GPs-about-treatment-and-drugs-says-health-chief.html
Regarding use of vaginal oestrogen, here are the latest recommendations ( last year) from the Brisith Menopause Society and Women's Health Concern:
Urogenital symptoms
Estrogen treatment has been shown to be effective in treating symptoms related to vaginal atrophy, such as vaginal dryness and superficial dyspareunia.
It also has a proliferative effect on the bladder and urethral epithelium and may help relieve symptoms of urinary frequency, urgency and possibly reduce the risk of recurrent urinary tract infections in women with urogenital atrophy.
Low-dose vaginal estrogen preparations can be used long-term in symptomatic women as required, and all topical estrogen preparations have been shown to be effective in this context.
There is no requirement to combine this with systemic progestogen treatment for endometrial protection, as low-dose vaginal estrogen preparations do not result in significant systemic absorption.
However, there is little evidence to prove the safety of vaginal preparations beyond one year of use; clinicians should therefore aim to use the lowest effective dose for symptom control and counsel women regarding this.
Non-hormonal preparations and lubricants can be used as an alternative but these are not as effective as estrogen therapy.
http://min.sagepub.com/content/19/2/59
On this site Dr Currie herself advocates long term treatment:
http://www.menopausematters.co.uk/dryness.php
Low dose vaginal estrogen preparations can be used long term without causing any known systemic effect, and without needing any progestogenic protection of the lining of the womb.
Your GP should not refuse - and if she does then I suggest you either go to a different doc in the practice ( find out who is more clued up) or demand to be referred to a menopause clinic (on NHS) - you should not have to go privately at all for this basic treatment
I hope this is helpful and good luck
Hurdity x
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However, there is little evidence to prove the safety of vaginal preparations beyond one year of use; clinicians should therefore aim to use the lowest effective dose for symptom control and counsel women regarding this.
If a Dr read the above they could feel justified in stopping the use after 1 year.
YET further down the piece it says this:
Low-dose vaginal estrogenic creams, rings, tablets and pessaries should be considered for all women with symptoms of urogenital atrophy.
Local estrogenic preparations and may be more effective than systemic therapy and can be used in conjunction with oral/transdermal HRT.
Indefinite usage is usually required as symptoms often return when treatment is discontinued – progestogenic opposition is not required as systemic absorption is minimal with estradiol and estriol preparations.
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Aww, thankyou ladies for your help and suggestions, you are all brilliant.
Taz, I have mentioned my bloatedness to my gp and the urologist as I was worried about the possibility of ovarian cancer, (as my paternal Nan had it) neither of them seemed overly concerned, but I must say, I tend to agree with Milliemoo, that it is part and parcel of low estrogen as for the 3 months I was on the vagifem my stomach returned to its normal flatness and now that the vag has been stopped all the nasty symptoms are back, including my huge bloated tum. :(
I'm not really sure if I have the VA tbh, as I don't really have the dryness or burning, just pain in my back and stomach, constant need for a wee and the bloated tum.
Hurdity and Sarah, thanks for the great information, you have certainly given me plenty of homework, my aim is to be so well informed on the matter that my GP will have no option but to sit up and listen to my concerns. I have a week !! Watch this space girls !!!
Milliemoo, I have taken a tolterodine this evening ( will just have to put up with the dry mouth) but I will ask for the kentara patches next week.
:thankyou: everyone
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Have you had a pelvic ultrasound? The vagifem's effect on you is quite dramatic and I wonder if your ovarian function is somehow affected by the slight addition of this very mild hormone. This is good scan, especially for confusing symptoms. I highly advise this study and it may guide your physician to more educated treatment for you.
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Good for you Hummingbird.
Sarah2, where did you get those 2 conflicting pieces of info from? I'd like to quote the latter one to my GP if she tries to take my Vagifem away >:(
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Millie- oddly enough they are both on the same paper by the same dr!
Go to the link left by Hurdity on the previous page to this thread- the one linked to the 'sage ' info.
http://min.sagepub.com/content/19/2/59
But then scroll through to Routes and Regimes until you reach the piece I quoted. Here:
Low-dose vaginal estrogenic creams, rings, tablets and pessaries should be considered for all women with symptoms of urogenital atrophy.
Local estrogenic preparations and may be more effective than systemic therapy and can be used in conjunction with oral/transdermal HRT.
Indefinite usage is usually required as symptoms often return when treatment is discontinued – progestogenic opposition is not required as systemic absorption is minimal with estradiol and estriol preparations.
Off label use of vaginal estrogen therapy can be considered in women with a history of hormone sensitive malignancy but the pros and cons of each case should be weighed up carefully with close collaboration with the oncology team.
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Sorry for the late reply Trey but not been able to get my head into gear to post anything for a few days, but thankyou for your input. My gp appointment is tomorrow and I will request a pelvic scan. I will also be asking to be referred to a meno clinic as I feel I can't go on with this pain and misery any longer. My symptoms have still not abated and to make it worse my gp,s rang me Friday to say that the appointment I made with the lady gp as had to be rearranged, due to her being sick. I'm now seeing a new young male Doctor. I would have preferred to see a lady gp, but if I want to do that, it is 1 more week to wait for app and I just can't wait any longer. :(
Has anyone had good care at either Nottingham, Derby or a Chesterfield meno clinics? As I can't decide which one to ask for a referral to.
Thanks to everyone on this site, it is my lifesaver at the moment. So for all you lovely ladies, just wanna say, hang in there, we're all in this together and it's great that we can support each other through such a difficult time in our lives xx
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Hi Hummingbird, so glad you will ask for scan. So much better than guesswork and will reduce normal anxiety associated with the unknown and hit or miss answers. I'm having retinal scans this Wed and scared to death, but know the relief I will have with results to guide treatment. The unknown is always the worst.
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Thanks Trey. Aww, I feel for you. Good luck with you scan on Wednesday. Retinal scan? Am I right in thinking that is to do with your eyes?
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Went for my dreaded gp app with the new young male Doctor yesterday and he was brilliant. He gave me the vagifem straight away and said he was very surprised that my urologist had refused to give it me!!!
He has given me 7 weeks supply and wants to see me when in 6 weeks time. If everything has settled down he will then put it on repeat script for me.
If I'm still having problems he will send me for a pelvic scan and also refer me to a menopause clinic.
I'm really happy with that, I'm just furious with the urologist for putting me through all this unnecessary pain. Just hope the vagifem doesn't take too long to kick in !!! Xxx
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So pleased for you hummingbird thank goodness you have an understanding GP. Hopefully your pain will diminish in the next couple of weeks. Did he tell you to start again and use every night for two weeks?
Katy x
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Thanks Katy, yes, he said every day for 2 weeks then twice a week, but I'm still in loads of pain and my bladder is driving me nuts, (my trips to the loo are getting ridiculous) so I'm gonna double up on the vag for a few days just to get it back in my system!!
Things can only get better!!!! ..........can't they? :neutral: xx
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Good luck, Hummingbird. I would double up too, speaking as one who now has to double the dose now they only manufacture the 10mcgs.
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Good news hummingbird and hope it sorts you out!
Hurdity x
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Thanks Scriv and Hurdity, just can't wait for it to kick in now, as it's been going on for almost 2 weeks I'm well and truly peed off with it ....literally !!!
Thank god I'm not on a water meter, must have had 15 wee's already..... And that's just today!!!
Sometimes it's hard to be a woman....Oohh, feel a song coming on here.
got to laugh though eh.... Even when we don't feel like it, we can't let the bugger get us down can we!!!!! ;)
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Love the water meter and the pop song ;D