Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Anabelle31 on January 12, 2025, 09:06:45 PM
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I posted a while ago about feeling like I had a uti all the time but never actually having one. Docs kept finding microscopic blood in urine but all tests came back clear. Currently gynaecologist says I’m in perimenopause and started me on vagifem 2 months ago. It’s worked brilliantly for burning and frequency but the past few days it’s come back and I feel really disheartened. Has this happened to anyone else? I run a lot and it seems like maybe running several days in a row kicked it back off. Thanks for any help.
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How many times per week do you use it? You may have to increase the amount of times you use it.
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Exercising or any other hard physical activity can easily start it off. You probably need to increase your dose of Vagifem, if you are using two pessaries a week its usually not enough.
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Violet - 3 times a week which doc was unhappy about. Insisted it should be 2.
Ayesha - exercise is my suspicion but can’t find any evidence online for this. Not much talk of blood in urine for that matter.
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There is not much online about the symptoms apart from the obvious but I do remember the terrible pain I ended up in after a hard days gardening, the constant bending down caused a lot of discomfort to the point I couldn't sit down by the evening and I also had the blood in urine too, so don't worry about that as its normal with GSM.
I think a lot of GP's connect topical oestrogen to systemic, both are totally different in use, its the word hormone that connects them. Topical is safe to use, if it wasn't you would not be able to buy it over the counter. If you can afford the freedom to buy it then do so, GP's are hopeless but Nurse practitioners can be amazing, speak to them if you can.
I know I am like a broken record but here is the link to the guidelines I follow in my treatment approved by my surgery and my wonderful NHS Nurse Practitioner.
https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf
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You're definitely not a broken record Ayesha.
A lot of ladies are left in discomfort due to GPs not prescribing enough local oestrogen to control symptoms while dishing out other drugs like they're sweets.
Annabelle31 - can you speak to a different GP at your practice? Very often they differ in their views and prescribing practices.
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Annabelle - change your GP! Pronto! Then stick his/her head down the loo and flush. Several times >:(
One can use VA treatment every night if necessary. When I get symptoms I pop a dose up mid afternoon and again every night for at least 5. Not something that I discuss with my GP. Repeat is issued without question.
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Thanks both - it’s just so frustrating. Doc says I’m too young and it only happens post menopause (I’m 41). Mother went through menopause early though. Keep insisting microscopic blood can’t be related, though they can’t find another cause. Fed up of it!
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Your doctor is talking absolute rot when saying it's only happens post-meno.
Speak to a different GP at the practice. You shouldn't have to suffer when there's a solution available.
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Anabelle, this is total crap from your GP. Don't accept it. You should be on daily local estrogen if you need it. It's incredibly safe. I needed it from 42. (Well, now I don't need it at all because I"m on systemic HRT and have plenty from that - but when I was on a tiny starvation dose of HRT I did need the local E as well.)
It's worth listening to the podcasts and YouTube vids made by Dr Felice Gersh by the way. She says that if you need local E, your systemic E is not high enough. If you have enough systemic E to get everywhere it needs, it should treat the vag as well. And the problem is the tiny systemic doses in modern HRT because most doctors are terrified of estrogen.
But that's a slightly different subject for you right now.
I highly recommend going private to the Newson Clinic and getting them to write a letter back to your GP, telling your GP to prescribe local E daily. Your GP doesn't have to take that advice but mine has with my HRT protocol, which is very high dosage. Try to find a better GP who will work with you, though. Because even if you go private it helps to have an NHS GP who will continue that private prescription on the NHS. If you have a GP as you describe, you will come up against obstacles over and over again.
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Anabelle, this is total crap from your GP. Don't accept it. You should be on daily local estrogen if you need it. It's incredibly safe. I needed it from 42. (Well, now I don't need it at all because I"m on systemic HRT and have plenty from that - but when I was on a tiny starvation dose of HRT I did need the local E as well.)
It's worth listening to the podcasts and YouTube vids made by Dr Felice Gersh by the way. She says that if you need local E, your systemic E is not high enough. If you have enough systemic E to get everywhere it needs, it should treat the vag as well. And the problem is the tiny systemic doses in modern HRT because most doctors are terrified of estrogen.
But that's a slightly different subject for you right now.
I highly recommend going private to the Newson Clinic and getting them to write a letter back to your GP, telling your GP to prescribe local E daily. Your GP doesn't have to take that advice but mine has with my HRT protocol, which is very high dosage. Try to find a better GP who will work with you, though. Because even if you go private it helps to have an NHS GP who will continue that private prescription on the NHS. If you have a GP as you describe, you will come up against obstacles over and over again.
Thank you this is really helpful. I think because of the blood in urine, my GP didn’t think menopause at all and just sent me for battery of tests re bladder etc. I did eventually see a private gynaecologist who said my estrogen was low and prescribed HRT - 2 pumps gel daily, 2 weeks of progesterone a month. I’ve been on that a month now. Been using vagifem for 3 months and it’s been great until this week. Disheartened to think maybe I have to give up running. Will make an appointment with Newsom and see what they say. Thanks again!
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Recurrent UTIs are a major symptom of low estrogen. Check out Dr Kelly Casperson on Instagram. She's a US based urologist who has a lot to say about vaginal E and HRT. She's there as kellycaspersonmd
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Recurrent UTIs are a major symptom of low estrogen. Check out Dr Kelly Casperson on Instagram. She's a US based urologist who has a lot to say about vaginal E and HRT. She's there as kellycaspersonmd
Thanks. I don’t actually ever have a uti. Just the microscopic blood.
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That could be due to vaginal atrophy. When the skin gets really thin in the vagina, it can bleed like that. Think of cracked sore hands......
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That could be due to vaginal atrophy. When the skin gets really thin in the vagina, it can bleed like that. Think of cracked sore hands......
That’s what I think. But that’s why it’s so frustrating that after 3 months on vaginal estrgoen working so well, the feeling is back. Grrr!
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But presumably you were originally on the higher loading dose of vag E? In which case, you need to increase the dose back again. Many women need to stay on it daily. It is a tiny amount.
If your doctor doesn't support that, then find a new doctor. But you can also buy it without a prescription - it's called "Gina". You can get it from the pharmacy or online. However you shouldn't have to pay for meds like that, you should be getting them on the NHS - but if you get temporarily stuck between GPs.....
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But presumably you were originally on the higher loading dose of vag E? In which case, you need to increase the dose back again. Many women need to stay on it daily. It is a tiny amount.
If your doctor doesn't support that, then find a new doctor. But you can also buy it without a prescription - it's called "Gina". You can get it from the pharmacy or online. However you shouldn't have to pay for meds like that, you should be getting them on the NHS - but if you get temporarily stuck between GPs.....
I was on a two week loading dose (which I continued for another week). Doc said 2x a week after that but I stayed at 3x a week. Am reloading now. She didn’t say it could flare up again, I thought if I took the pessaries I’d be fixed! Also I’m 41, not sure I can get Gina until I’m 50 without prescription. Thanks for replying. It means a lot.
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Yes, you're right about Gina there. Although you could tell a porkie...
You'll need to take the pessaries forevermore at whatever dose works for you. Unless you start an adequate and high enough dose of systemic estrogen and then don't need the local anymore (this is what happened to me).
Look up Dr Felice Gersh on YouTube and there's a podcast called Hack my Age which interviewed her very recently. Her position on local estrogen is that if you are taking 'enough' for all your body parts, your vagina will also have enough(!) and if your vag doesn't have enough, it's likely your brain/heart etc etc also won't....
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Buy Estriol online if you can, it will supplement the measly dose of Vagifem you are allowed, smear some on the outside.
Also are you using a moisturiser, the oestrogen treatments are of a very dry consistency, the moisturiser will help with lubrication.
I am very, very much older than you. My regime is Vagifem daily, Estriol smeared on the outside twice a day and I wouldn't be without a moisturiser for lubrication. I am not on systemic HRT and as much as these so called experts say, I am extremely healthy for my age with my heart and brain very firmly intact, probably down to my life long healthy lifestyle, which is very important as we age.
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GPs still don't get it! The leaflet in the box is incorrect. To keep symptoms under control many require VA treatment nightly.
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So interesting and helpful reading this thread. Thanks to everyone for all your comments. I sometimes wonder how I survive without the helpful people on this forum.
I had a flare up on GSM starting three weeks ago, as always urinary frequency and burning down below. I’ve been on Vagifem twice weekly and a tiny smear of Ovestin externally, no other HRT since a surgical menopause 10 years ago.
When this happens I feel clueless and, again, GPs are absolutely useless. Last year when this happened, they just kept sending MSUs which were always negative. My own GP said he was at his wit’s end with me! So I felt I was a nuisance and abnormal too!!
I’ve continued with the Vagifem twice a week (I’ve requested a repeat prescription to increase the dose but it seems to have been ignored) and I’m wondering what to do regarding the Ovestin, which I’m using between every other day and 2-3 times per week . I’m using Epaderm 2-3 times a day which I’m finding makes me more comfortable than the Yes OB which seemed to irritate but I’m also wondering whether the barrier cream is not helping absorption of the Ovestin. I try to rinse off the Epaderm in the shower before applying the Epaderm.
Hope all of this makes sense. Thank you so much.
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If I were in your position, I'd use an applicator full of Ovestin a couple of times in-between the Vagifem doses. If you increase your use of local oestrogen and feel better, go back to your GP and tell them how you now feel.
To steal a link from Ayesha (Thanks Ayesha)
https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf (https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf)
Print off and show to your GP, especially the bit in the Management section that states you can use Vagifem/Ovestin more than twice per week.
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GPs need :kick: :beat: Is there a Nurse Practitioner at your Practice who has more knowledge than the GP seems to have? Get a copy of Me and my Menopausal Vagina, read then pass to the Nurses at the Surgery. ;-)
Get Vagifem up there for the next 3 nights with 'ovestin' each morning and evening in the applicator to the red line. Then ovestin/estriol every night for at least 2 weeks. Make the appt with the Nurse for next week - I can get an appt with 1 within 24 hours and can see my GP in about 3 weeks.
Let us know how you get on. When symptoms niggle I swallow Nurofen 3 times a day for 2 days to ease the nip as the urine flow shuts off.
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Thank you SundayGirl and CLKD. That’s all really helpful. There is only one nurse practitioner at our surgery and I wouldn’t say she’s much better than the GPs. It’s a 3 week wait for any of them. Sadly all of the good GPS retired last year.
I’ll increase the Ovestin and see what happens from there
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We can't overdose which is what many medics still worry about ::). If symptoms easy you can alter the regime to suit.
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There's no need to feel clueless, the only way to treat a flare up is to increase the dose of oestrogen until you start to feel better again, its really as simple as that. Your surgery is making it all so ridiculously complicated.
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the only way to treat a flare up is to increase the dose of oestrogen until you start to feel better again
But what if you are experiencing a horrendous flare up and using estradiol nightly and ovestin twice daily? That's my current position and I have no idea what more I can do.
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I recently had a severe flare up after the Covid vaccine, it took me right back to the beginning when my symptoms were chronic.
I am already on daily treatment but I increased my dose to two Vagifem daily and a good smear of Estriol cream three times a day. The increased Vagifem I used for a few days but kept with the three times daily of Estriol until the symptoms eased, it took about two weeks to be symptom free.
It’s the reason I like to keep a back up supply in cases like this and it’s the first time in four years I have experienced such a bad flare as normally I am symptom free on my usual daily regime.
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That's interesting Ayesha, I used estradiol x2 per day for about 2 weeks prior to having a TVS last year and it was tolerable. I was wondering if it was OK to use that amount but thought what the heck!
My GP called last week as my smear is overdue and I told her no way would I have it. She then went back over my notes from.the gynae from a few years back and said she thinks maybe I do have vulvodynia, which was in my opinion incorrectly diagnosed, too.
So I'm seeing her next week and she want to use local anaesthetic to examine me and do the smear if possible. I'm dreading it.
I may go and buy some Gina because I won't have enough and I imagine not even a meno specialist would prescribe estradiol x2 per day. Or are you able to get that dose?
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I think a meno specialist would but only for the short term until symptoms eased.
I have never asked a GP if I can increase my dose and to be honest I don't want to because I feel they don't know enough as it stands now. I really prefer to be in charge of my own treatment because I know its safe to do so. Topical oestrogens are low dose but I would only want to do this in the short term, I would hate it if I had to continually increase dosage too many times.
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Thank you clarifying, Ayesha. My symptoms were misdiagnosed and therefore untreated for 12+ years so I was really chuffed things were under control back late summer. The thought of being told I do have vulvodynia is really concerning because the gynae didn't successfully treat it (mainly because it was obviously VA) and I don't want to end up in a cycle of appointments simply because I need a little more estradiol for a while.
Well, I've got a week before my appointment so let's see. Unfortunately I'm also treating bv at the moment so rather a lot to shove up there!! I just hope they mix OK.
Again, thank you. It's so helpful to talk to someone else going through the same.
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Today’s update …. I contacted the surgery again to say that I had insufficient Vagifem to use 3 per week as prescribed sbd could I have some more Ovestin to use externally (which hadn’t been prescribed for a year). The nurse practitioner has now sent a prescription through for Vagifem but I am not allowed to request more until mid-April. Ovestin was not prescribed ….. gahhhhhh!!!!!!
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What part of the UK are you in, do you have access to a Menopause clinic? If not write to your surgery and quote the relevant recommendations in the BSSM Position Statement:
https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf
I am just appalled at the negligent treatment you are getting at your surgery, its something I could and would never put up with without a fight!
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MrsMitch. you have the double whammy of having to cope with another condition, that can't be easy. Do let us know how you get on.
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Patch: Ask that Nurse to buy herself a copy of 'me and my menopausal vagina' ;-). She is ignorant of what women require to keep this painful condition under control. Explain that the info in the leaflet in the box is out of date and mayB she could ring Dr Louise Newson for clarification .
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Pachsmama, it would be good if you can see a meno specialist, but it's usually a long wait, I waited 18 months. But at least you should then be able to get the dose you need and any adjustments made to your treatment. I'm angry for you because all this is so unnecessary. If it was any other condition that caused pain, your GP would be chucking just about every medication at you to try and ease your symptoms.
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Thanks everyone. I’m in Lincolnshire. I was referred to gynae a year ago but still waiting. I truly think they just don’t care. :(. I’ll be sure to send the BMS link next time.
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Check out your local GUM clinic, a friend and a member here had great results from them.
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Patchsmama -- I know it doesn't help in a practical way but I am upset and angry at the way your GP surgery is acting.
If it was any other condition that wasn't being controlled with the prescribed meds, then either the amount would be increased or an alternative would be explored.
Could you get a face to face appointment with your GP and actually stick the information under their nose and make them read it. Then ask them to examine you so they can see exactly what is going on.
Failing that, could you ask around friends/family/Facebook etc for a GP who is more sympathetic to women's issues.
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You have to be proactive when dealing with medics who don't understand what the effects that GSM has on the body and the fault lies with the fact that not enough women are coming forward or even talking about it but instead live with a condition that can be crippling, how the hell they can do that is beyond me.
It's quoted that 70% of women suffer with symptoms yet only 7% receive treatment and there lies the problem, not enough medics have ever heard of the condition which makes it more difficult for the women that do want treatment. When I was first diagnosed over four years ago not one medic in my very large London surgery had ever heard of GSM (Vaginal Atrophy). I got lucky when on yet another appointment a GP advised me to see his colleague who was a gynaecologist. After an examination she prescribed oestrogen treatment and when it was apparent the two pessaries (Vagifem) a week was not having any effect she told me to use the treatment every day, its what she herself does because its perfectly safe to do so, further on she later prescribed Estriol cream for the outside area.
I am at a new surgery now and again struck lucky with a fabulous nurse who totally agreed with my regime and was very knowledgeable about all things GSM, hopefully that means that things are improving but we must be proactive and be ready to put up a fight when confronted, it happened with a pharmacist recently and I am always ready for the next confrontation of which I have no doubt there will be.
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Gynaecologist may not know any more than we do about VA ! Get an appt with a dedicated menopause Clinic, there are waiting lists both in the NHS and private sector.
Ring the Gynae. Dept to find out whether in fact, a referral was sent! Also could U take a sudden appt. should any1 cancel?
Ignorance is no excuse in a Court of Law, this should be so through out the NHS regardless of speciality.
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That's so true about gynaes CLKD. I saw one some years back, around 6 years in to VA and she diagnosed and treated me for vulvodynia and of course it didn't work. She got really cross with me for asking if my pain could be caused by menopause and refused to consider it. I'm dreading my GP referring me back to her.
Ayesha: I have to argue with my pharmacist every time I collect estradiol pessaries as she tells me it's above the recommended dose. Each time I tell her the information on the leaflet is outdated but she won't listen.
I hope you get sorted Patchsmama, sounds like you're in for a battle, too.