Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: ancient runner on May 18, 2015, 12:58:01 PM
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Went to chemist to pick up my prescription this morning and he can't get it anywhere. Can't find anything online. Anyone know what's happening?
Feeling pretty low about this as am sleeping terribly and vaginal/bladder symptoms v up and down anyway at the moment. My GP has passed me on to his colleague who used to be a gynae to check out that there's nothing else going on other than dropping hormone levels - the colleague was the one who gave me a tube of orthogynest when I'd self diagnosed VA and suggested that tube would probably be enough to sort me out. :( Not feeling v optimistic then if I need to use vagifem x 5 or go on to full HRT.
To add to the fun I am waiting for a MRI scan on liver as ultrasound lady spotted small lesion there which she thinks is probably nothing sinister (mengionoma?) but guess that might rule out an oral HRT until checked out?
Could burst into tears but... refuse to.
Sorry for the whine. Needed to vent to someone who might actually understand all this.
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Have you a packet of the product and see if the Company has anything listed on it's web-site? Sometimes it's due to lack of a basic component :-\ from abroad, or sometimes because the NHS isn't paying full whack for the product and it can be sold to mainland Europe ::)
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I read about a contraceptive pill being withdrawn because they were changing the design on the pack ! Don't panic just yet, it might be a really temporary withdrawal(I hope so)
Annie xx
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Ancient Runner - that is such a nuisance - I'm sure they be back soon though - maybe just a supply issue?!!
I really wouldn't rule out systemic HRT as I've found it's really helped my VA and bladder issues - it's great to get some sleep as well. DG x
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Please don't worry about the liver lesion. Meningioma occurs in the brain and is a benign tumor. Hemangioma occurs in the liver and is also a benign tumor. I have at least 6 in my liver. Many people have them.
Also, I second the idea to consider HRT. Vagifem only works for me anymore if I am on HRT. Estring is the same. I used Estring several years ago 2010 and was able to get by without hrt for a while, but it only really helped for about 2 months and then wasn't enough. Since then, it doesn't help at all without HRT. I just have constant burning of urethra and vaginal opening without HRT and have to use local estrogen also. It is a miserable way to live.
Maybe they are making it better? I doubt it is being discontinued.
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Hello all you lovely ladies
Thanks for the info on hemangioma - I am really hoping that's what it is!
I haven't ruled out full HRT - in fact, would do that quite happily but suspect that while I can still limp on as I am (hormones obviously still v up and down) the GP might be less keen as the problems are mostly Down South.
I've checked the Estring website and there's no mention of current supply problems or unavailability - the pharmacist thought it was probably temporary but had no clue if it would be six days or six weeks or six months.
Am seeing GP for a once over Down Below on Thursday to make sure there's nothing else going on before considering the options. Does anybody have any official info at using Vagifem back at the 50mcg dose I could quote, other than Babyjane's GP seminar? Since that's what the Estring provides I can't seen a good reason why not.
Does anybody know why some of us have real problems in this region by the way? Is it something to do with more/more sensitive oestrogen receptors in different women? I am really curious and have had a lifetime of problems I put down to cystitis, which I now think mostly weren't cystitis at all but hormone related.
xx
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ancientrunner - When I saw the urologist and had a cystoscopy he said I probably had interstitial cystitis which he believed was due to scaring(I assume as a result on untreated infection) which causes this ultra sensitivity. There is a poster on MM who has seen a specialist urologist that believes those of us with this burning have a specific underlying infection that remains untreated and needs long term antibiotics - I'm not keen on using ABs and if he is right, why does the burning go away when using HRT??!!!
I have to say that, though I still use Vagifem once a week to try and maintain things, I still get some burning the day after I've used it so there must be something in Vagifem and the oestrogen creams that irritate. The Estring was the best for me but I did get a bit of thrush which also gave problems. I am mostly comfortable now using systemic HRT which is wonderful. I'd get yourself on some Femoston 1/10 as soon as you can to see if that helps. DG x
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I find that the day after I use the product (name escapes me ::) ) that I have a return of symptoms :-\ - so am trying a few weeks without.
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There is a poster on MM who has seen a specialist urologist that believes those of us with this burning have a specific underlying infection that remains untreated and needs long term antibiotics - I'm not keen on using ABs and if he is right, why does the burning go away when using HRT??!!!
DG x
There are kinder ways of saying things DG - this person is not a he and she is someone who is just sharing her experience to try and help others - all anyone wants is to get better when you are burning all the time and who is to say what works best ?
Hattie
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I wonder about the extra sensitivity thing too. Maybe it is related to more estrogen receptors down there for those of us who tend to have this continuing problem. I was checked so many times for infection with nothing found. Cystoscopy twice over 5 yr periood to look for interstitial cystitis but they said I didn't have it. On hrt no blood in urine, without hrt always have blood cells in urine even with local estrogen. Vagifem always makes me burn a little the day after I use it too, but it is not as bad as the creams or without any local estrogen. I think I am allergic to propylene glycol which is in the creams as well as vagifem. It is a preservative I think. The allergist says he can't test for it though. Estring doesn't contain it, but I don't think it was enough estrogen for me.
My first symptom of perimenopause was burning only when missing periods....not hot flashes. It started even before my periods stopped completely and has not gone away for about 9 years (and has gotten worse) now so I fear I will have it till I die unless I take HRT.
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Hattie - you haven't read the response from DancingGirl correctly ;)
A urine infection HAS to be sent to a Lab. for culturing - if it grows a bug then the appropriate Anti-biotic can be prescribed, otherwise the continual urine-type infection feelings are probably due to a lack of oestrogen down there.
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Thank you Dancing Girl for your personal message - i apologise for any misreading of your post.
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Sorted then ;)
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http://www.ashp.org/menu/DrugShortages/CurrentShortages/Bulletin.aspx?id=1180
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Thank you Hattie - I didn't express myself very well - these misunderstandings happen from time to time.
DG xxx
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Shouldn't GPs give their patients a heads up when items are likely to be non-available? Thanks for the Link!
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Thanks all - lovely pharmacist from the chemist rang yesterday evening to say he'd been asking more questions and it should be available again from June 12.
Agree re other things causing slight irritation - Estring may not be quite enough to do the job throughout my "cycle" any more but it doesn't irritate at all.
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That's a really useful site Lancashire Lass - my digging round didn't find that at all. Thank you!
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Went to chemist to pick up my prescription this morning and he can't get it anywhere. Can't find anything online. Anyone know what's happening?
Feeling pretty low about this as am sleeping terribly and vaginal/bladder symptoms v up and down anyway at the moment. My GP has passed me on to his colleague who used to be a gynae to check out that there's nothing else going on other than dropping hormone levels - the colleague was the one who gave me a tube of orthogynest when I'd self diagnosed VA and suggested that tube would probably be enough to sort me out. :( Not feeling v optimistic then if I need to use vagifem x 5 or go on to full HRT.
To add to the fun I am waiting for a MRI scan on liver as ultrasound lady spotted small lesion there which she thinks is probably nothing sinister (mengionoma?) but guess that might rule out an oral HRT until checked out?
Could burst into tears but... refuse to.
Sorry for the whine. Needed to vent to someone who might actually understand all this.
Oh that used to be a Gyny sounds very knowlegable NOT 1 tube and it will sort you out as b...y if!!!!
If you ave Vaginal Atrophy YOU need on going treatment like Vagifem permanantly or Ovestin!
You have to decide if you want HRT or Vagifem x 5 still only equals what you would have been given
2 years ago Vagifem only 25mg same 14 days then 2x7 over 70% of women take 3/5 10mg wkly now
Ive been reading up on all over the world forums about the drop of dosage of iVagifem 25 to 10
It was on A VERY SHAKY 2000 People they reserched so they dropped it for safety reasons NOPE
They dropped it for monetry gain Other wise it would be less than half the price a pk and it isnt is it? NOPE we are he CASH COWS Us Baby boomers and post Baby boomers.
The estring thing seems to have gone walkabout? Both my cousins use it on the Wirral cant get it x
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Hello Suzi Q - tell your cousins it should be available again around June 12 (but am not holding my breath).
It's depressing that we feel we have to fight for the "old" dose of Vagifem when it's what's current in Oz and as you say was dropped on the evidence of not great research. Personally I think I'd probably be OK without full HRT if it were possible to have a dose slightly higher than the 50mcg a week and I bet that would do the job for lots of others too. Would love to know why that isn't an option, or - with something like a Mirena to offset the extra oestrogen - couldn't be.
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Just to clarify regards " MM member who sees a urologist" that is me he is actually a Professor of immunology who has been studying UTIs for many many years, a paper will be presented this year end of or early next, of so called "IC" patients with an 80% success rate all these patients had hidden infections under a biofilm......and yes oestrogen is required to keep the bladder healthy and to fight bugs.....however when this stops working the bladder infections can cause vulva pain/vagina pain/leg pain .....just all,the nerves firing off and clitorise pain is also a common sympton......
He has a lady who a year ago could not walk anywhere for the need of needing to pee every ten minutes, excruciating leg pain and back....all NHS tests where clear diagnosed with IC, eight months later yes still on antibs but is almost sympton free......NHS testing misses 40% of ALL UTIs and The Professor still hasn't found them all....we all have a minimum of 15 bugs in our bladder and the idea is the good and bad learn to get along together, and quite often when a bug is picked up it just happens to be the bug that has come out to play on that day and is not necessarily the culprit ......and the short term low doses of antibs is what has caused this serious problem of the almost epidemic we have with UTIs......and the resources are so tight that everything is done for the shortest cheapest let's put a sticking plaster of a dam......to save money in the short term but costing a fortune in the long term.
So yes absolutely VA causes vulva pain......but so can long term untreated UTIs or the term IC which is an umbrella phrase of we havnt got a Blinking clue.
But what I do no is that my internal vaginal burning went within a week of the antibs......for the UTI I was told I did not have......the vagifem has also been helping without a doubt but a UTI will also really upset the vagina/vulva also as the infection gets onto the vulva.....
The problem is with all this , is there are no definate answers.......as the professionals are all still learning and we are all guinea pigs......I have been off antibs for ten weeks now.....I was on them for eight months toe curling high doses.....I had not been on antibs for about thirty years never had a UTI before.......also I never got thrush either......some ladies get it with one antib, others like me never get it.
What needs to be happening with UTIs is when we get one we should have a high dose for a minimum of 2-4 weeks preferably four.....and the three day use of Trimethapone should be banned it was flagged up in 1999 as showing signs of ineffectiveness back then.....if my dog gets a UTI she is given a ten day course......yes they lick there butts.....but it's basic common sense that three days is not enough to work.....it just starts working is then stopped and the bug then forms resistance and then knows how to fight the antibiotic and not work properly next time......one of the very top bods I have seen said GPs need to think outside the box when prescribing antibs for UTIs.
The Professor has built a model working bladder so they can really start to see understand what is happening .......and watch this space in about 2-3 years in how UTIs are treated !!!!!!!!
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:thankyou: are you part of the Paper?
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No I won't be......as I am a "new comer" he will have been collecting evidence for years.....word is out though he sees/phone consults 240 men/women a week from all over the UK / Europe/OZ and the US......the pelvic pain clinic I went to NHNN Queens Square London said he is the only one to sort out bladder issues ( this was a NHS appointment) I said I was really scared about the antibs and the consultant said .......the long term consequences of untreated UTIs are worse than the antibs and he uses them correctly very high dose hit hard......rather than fanying around.....but as with everything medical not everyone can hack the antibs I personally never had thrush felt sick or had the runs......and he has never had a case of c-diff ......and not everyone will come right either....these infections "hidden" under a bio-film which is what the powers that be are scrared to admitting is it opens a whole can of worms regards many " unsolved " medical problems.......as a side note I had had "IBS" for thirty plus years within two days of antibs all those symptons went and have never returned.....and there are others who have reacted the same.....so I bet a lot of IBS is actually a hidden infection in the guts somewhere......since the antibs I do foot long no pushing poos that are the ideal on the Bristol poo scale😜 and smell "good" lol.
But I can assure you I am not a member of the lets all take high dose antibs etc......but I do no if my daughter gets one more UTI she has had two in the last year she will be off to The Prof......the last lot of antibs she had is the dose "I" said she should have, he has children under ten in his care that where told there's nothing wrong.......something is very wrong somewhere.
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Maryjane- thank you so much for all that info - it makes a lot of sense to me and supports my view that the improper over use of routine treatment with antibiotics for many things is simply wrong. How can a 3 day course of ABs properly clear up a secondary infection ? - somebody came up with this as the cheapest option so it is now standard treatment. Most AB treatments for infection are for a minimum of 7 days and we are told to make sure we finish the treatment - why is 3 days deemed enough for UTIs????. It also makes sense to me that an imbalance in the natural bacteria in our bladders can result in infection - it's the same with our digestive system - so, in fact, these short term shots of ABs could make things worse. If infection is present then clearly better testing is needed and appropriate ABs should be given for the right amount of time to ensure the infection doesn't return.
I have to say that the urologist I saw about my burning urethra and the presence of blood in my urine admitted that IC was something they really didn't fully understand. It is interesting that my burning has really improved since I went back on full systemic HRT - oestrogen clearly does really help. Vagifem and oestrogen creams actually made things worse - the Estring was the best for me but gave me bouts of thrush.
I hope this professor is listened to - there is clearly much to be learned about the very distressing problems we get with the bladder and it's effects on our female parts. DG x
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I think the tide is definately going to be turning.......he has three PHD students working with him one a gynae one a urologist and another don't know......but it means it's getting out into the next generation......he uses antibs that are very old and not overly used for UTIs so he has more to "play" with and uses something called "hipprex" but not everyone can tolerate that.
Luckily my GP has been very supportive.....as the high dosee are huge.....but she is realising that the nightly antibs that is given regularly for up to a year/years is actually not helping and probably making the problem worse without realsising it.....as all its doing is making the bugs learn how to become resistant to that low dose trickle trickle antib.........
........and the standard treatment for poor ladies in care homes is trimethapone for many......and that awful smell of urine is constant UTI........also some powers that be are starting to say that all women over forty should take local oestrgen to help prevent many of these problems.......he treats nurses, midwives,consultants,children of doctors so our own medical profession realsie they are hacing to have this drastic antib treatment to get better........as a side note there is also a GP ( nhs and private) she is also an immunologist who also does the same treatment and her standard patients have a month of antibs for a normal UTI...........and my homeopath who was once also an immunologist said the only way to get this sorted is very high dose long term antibs......and she said when antibs are given for anything it is usually for a far to short a time.......but what is interesting is they are all immunologists and understand far more than your urolologists are ever going to......they spend there time in the labs crushing the numbers and seeing the evidence.
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Wow, just caught up with all your info Maryjane - as someone who had SO many courses of ABs for cystitis in m 20s and 30s this is really interesting. I like the sound of your guy very much, and the idea that he's teaching a new generation too is heartening.