Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: SaraUK on February 19, 2024, 05:10:21 PM
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Hi ladies,
I'm 53 and am so desperate for help right now, so much I don't know how I can go on.
I have been on HRT Oestrogel 2 pumps and utrogestan cyclic since Jan 2021 due to night sweats and anxiety mainly.
In May 2023, I thought I had a UTI. Constant needing to wee, even after weeing and burning down there. It was 4 days before my holiday abroad, so I was stressed to the max to get it sorted. Whether that triggered it at first, I don't know. Urine test at GP showed nothing wrong, so my GP put me on Vagirux topical oestrogen. I did the 2 weeks daily and by 7 days it went. After the 2 weeks daily, I dropped to twice per week as instructed. Within 48 hours, it came back again. I then phoned my gp and she said try every other day (off licence) and see how you go on. I did that, and it did ease off. I then had a few months with it being ok on every other day.
Then in end of October, I tried dropping to 3 days per week, as I was worried about using more than the licenced dose, considering I was on systemic HRT (2 pumps of ostrogel and cyclic utrogestan). By the end of November, my bladder came back, as if I had not been taking anything. So depressing. I then, on 28th November, immediately started on daily vagirux. By the time christmas arrived, it was the worst it has ever been. Not only UTI feelings, but external burning worse than ever before. I couldn't sit down, do my work, go anywhere. I then read on here about Ovestin and immediately contacted my GP on 21st Dec begging for that to ease the burn. I was prescribed it, and within around 7 days, the burning eased off and strangely the bladder issue subsided. Now I take Utro from 15th to 28th, so whether it was due to be going off that for a bit, who knows.
Then, on 5th Jan, I had a GP appointment, she said up the oestrogel to 3 pumps and continue with the daily vagirux and ovestin daily, also she said I am at the right time to change from cyclic to contiuous utrogestan. Because the dose drops to 100mg daily (from 200mg over 14 days), it may help. She examined me and said she could tell I was using the topical oestrogen, so I suppose that means no signs of VA. Who knows. She suspected vulvodymia, but why now, when on all this HRT?
The results of my blood test showed estrodial at 159. Not sure if that is good or low.
Anyway, to cause more confusion, I started continuous on the night of 15th January, but.... my bladder and burning external issues started up on the 15th daytime. So not sure I can blame utrogestan.
It is now over 10 weeks that I have been using vagirux daily, with ovestin externally and I am just as bad. One week the bladder is bad, next week the burning is intense. I feel like I am burning, on fire, like a chemical burn sensation all the time. I am now questioning vagirux, but I did have all these issues before I started it. I am so depressed, I can't go on like this. It is causing my anxiety to go worse, which makes the condition worse. I am doing meditation, taking all the right supplements, on HRT. My husband sleeps seperately from me so I can sleep, no chance of any intimacy now I am on daily vagirux plus this horrid condition.
I honestly do not know what to do. I have another appointment this week with my GP, but what are they going to do next? up my gel again? I am already on daily vagirux which is off licence. I tried using Yes OB, which seemed to ease things a bit, but once I have a wee, it's back. I am so lost right now.
If any ladies can relate to this, please help. I'd love to know how you sorted it.
Thank you ladies.
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Because vaginal atrophy is localised and may mimic repeated urine infection-type symptoms really really well. Your GP is correct in suggesting using every night, many of us find that is the way to keep symptoms under control. Others manage using occasionally, i.e. every 3rd night and 5/6th nights.
There are moisturisers too: yes or sylc : or apply 'ovestin' around the outer labia and vulval areas. Regularly. When I get the need2P feelings I take 'nurofen' 2, 3 times a day for 2 days which eases the nip as the urine flow shuts off.
Once under control stick with what suits your body. Systemic HRT can also help and some find using both keeps symptoms under control. 'off licence' isn't a problem as 1 cannot 'over dose' using VA treatments.
We have a 'bladder issues' thread as well as lots on VA. Make notes ;-)
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Just quickly, but there is something called I think an Estring which delivers a higher amount of local oestrogen. I think you change it once a month, maybe more often.. Why not ask about that to use instead of the vagirux and continue with the cream too.
Another alternative is the Intrarosa which is another pessary but I believe it has some testosterone in it which sometimes helps women more than just oestrogen alone. It is good at plumping up the tissues and providing more moisture. You could find out more looking on Louise Newsons website called Balance. I believe she talks about it.
Both these are available on private
prescription or independent pharmacies if you have trouble obtaining them. x
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One should get oestrogen and progesterone sorted B4 even considering adding testosterone otherwise U won'd know what might/not be working. Testosterone can be prescribed by a GP on the advice of a Consultant.
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I would say clearly the oestrogen isn't working, already been upped to 3 pumps and she needs help fast
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Furthermore the Intrarosa isn't the same as taking testosterone. Much lower dose
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There are other ways of delivering oestrogen B4 considering testosterone. However, many women require it as they age which some GPs aren't aware of.
Tnx Gnatty.
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There is a condition called Lichen Sclerosis that can cause itching/burning plus the feeling of a UTI, it can also really burn when urine touches the skin, and is not always recognised by GPs. It could be worth you reading up on it and asking your GP if it's possible you also have this, in addition to vaginal atrophy. The treatment is different (basically a steroid cream) but moisturisers help alleviate symptoms temporarily.
It might not be LS, of course, but could be worth you investigating.
Suzie
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Estradiol at 159 is low, it might be that you're not absorbing it very well. Do you have other meno symptoms?
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Sara I can't advise much on the local symptoms but can say that your estradiol is low and I would therefore increase your systemic hrt which might well also help with local VA-UTI problems.
At least 300 pmol is recommended, some women need it much higher for symptom control (I'm one of them and am also a poor absorber)
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I can’t help you as I’m totally new to this myself but I just wanted to say i absolutely feel for you. I have cystisis /UTI right now and it’s driven me mad at work today clock watching just desperate to get home. That’s nothing compared to what you’re going through which sounds so awful. I do hope you can get some help.
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Sara, are you going to come back and see all this help here? I hope so...
As Sheila says 159 estrogen is LOW LOW LOW. The minimum amount for bone protection is 250pmol, so you are NOT on enough systemic estrogen yet.
It's very likely you need at LEAST the max licenced dose, but probably more. I am on 8 pumps of Oestrogel. EIGHT. The max licensed dose is 4. Forget about licensed doses, they are ridiculous - if you are not absorbing, what does it matter if you are even bathing in it?
As for the Ovestin and Vagirux etc etc, these are topical and you can use them abundantly every day, together, if needed. There is zero risk and it is totally fine to use as much Ovestin and Vagirux as you need to, as well as systemic HRT. Get yourself on decent amounts of estrogen, fast.
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Thank you so much ladies for all your responses. It really helps when it's not a subject you can talk to others about.
I am speaking to my GP tomorrow over phone, so I will see how that goes.
As I suffer from anxiety anyway, all this is making my health anxiety even worse, which makes the symptoms worse.
I understand that quite a few of you have mentioned that 159 is low, but what happens to the progesterone dosage if I go up and up in oestrogel dosing? I have just gone to continuous Utrogestan on 15th January of 100mg per day.
If I increase my oestrogen dosage, will I need to take more progesterone, oh god I really hope not. I am a bit concerned when I read that it is safe based on studies of the average dose of 2 pumps per day. But what about beyond that?
As for the utrogestan, I initially blamed this on my anxiety, hence why GP put me on continuous lower 100mg daily dose. She did say I can use it vaginally if I wanted, but to be honest, I've read that some women actually get bladder issues using it this way. That would be the last thing I would want, especially with all this bladder situation and burning going on. Plus having to use vagirux everynight is already a burden and sex life killer. Then there is the Mirena coil, but again, it would be right next to my bladder. So the alternatives are more worrying to me than what I am currently doing.
Ladies, if you are on more than the licenced dose of oestrogel, how do you keep track of the womb lining? Do you have regular scans? Which I presume is private?
The suggestion of Intrarosa sounds promising, but again on private, so not sure how I would get that. I will ask my GP tomorrow.
One last point, I asked if testosterone would help bladder, and my gp kind of said "yes maybe", but she can't prescribe it unless I went to her and said I had low libido. Ha, with all this, who does have any libido left!
Anyway, thanks ladies for your help. It is much appreciated.
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If in the UK 1 shouldn't have to pay for any treatments. Do make a list ready for the 'phone call and jot down answers and suggestions: then report back ;-).
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Hello ladies, a quick update on my gp appointment today. She said if I was to increase from 3 pumps of oestrogel to 4 pumps, I would have to double up on my progesterone (Utrogestan) to 200mg per day, or have the Mirena coil fitted. This worries me to hell due to my bladder issues. So I am now so torn about that.
She did suggest that testosterone "may" help bladder, so I have a blood test scheduled for march to test for my levels first. She said she needed to know if I am in the safe limits to prescribe it.
I also have an appointment in march for a swab, just incase I have an infection that is causing the burning, but she did say it sounds like vulvadynia. Sadly she said the only thing that it responds to is antidepressents, which I really dont want to go on.
So, not sure how I feel about todays appointment. I feel more stuck at a dead end to be honest.
I would love to know what progesterone type and dose ladies are on who are on 4 or more pumps of gel?
She also said that the menopause society have mentioned a few women having heavy bleeding due to private clinics prescribing very high doses of oestrogen, which is quite worrying.
One other interesting thing was highlighted, that my estradiol levels in 2017 was 807. Now in January this year, it is 159. So not sure if that is any indication as to whether I need more. She did say numbers are not a true indication, because some women have very high numbers and still have symptoms and some have very low numbers with no symptoms.
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Sara, are you going to come back and see all this help here? I hope so...
As Sheila says 159 estrogen is LOW LOW LOW. The minimum amount for bone protection is 250pmol, so you are NOT on enough systemic estrogen yet.
It's very likely you need at LEAST the max licenced dose, but probably more. I am on 8 pumps of Oestrogel. EIGHT. The max licensed dose is 4. Forget about licensed doses, they are ridiculous - if you are not absorbing, what does it matter if you are even bathing in it?
As for the Ovestin and Vagirux etc etc, these are topical and you can use them abundantly every day, together, if needed. There is zero risk and it is totally fine to use as much Ovestin and Vagirux as you need to, as well as systemic HRT. Get yourself on decent amounts of estrogen, fast.
Hi, can I ask what dose and type of progesterone you are on for 8 pumps of gel?
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I'm very progesterone tolerant, so I can take as much as they want me to - is the first thing to say.
I'm on 200mg the first half of the month and then I increase to 300mg the second half. I stop to allow a bleed for a week. I've kinda made this up myself though ;D ;D
I was told to do either 200mg continuously or 300mg sequentially - if you want the official line. I tried 300 sequentially but I got endo pains back. So then I tried 200mg continuously - but because I am peri, I would then get breakthrough bleeding. So I decided to stop for a week to allow a bleed. But then I thought I wasn't really doing 200mg continuously, so I decided to do nothing for a week, then 200mg from day 7-16, then 300mg from day 16-26. Then stop for the next bleed. This seems to be working okay and is definitely enough progesterone ;D
Sara, whilst it's true that it should be symptom-led, there is also factually the bare minimum for bone health - which is 250. 150-odd or whatever your estrogen was, is very low. It is not enough to protect your bones or to give you the benefit of HRT. You should do all you can to increase estrogen, and consider a Mirena coil if you can't take more utrogestan.
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Thanks for the reply.
Here is an update of what has happened to me. So I started continuous Utrogestan on 15th January, and upped my dose to 3 pumps of oestrogel. Throughout February, my bladder issues still continuoud. No improvement at all. Started getting very anxious and panicky. By the end of Feb I had a complete meltdown. My body was shaking, sweating, I felt nausea, had diahrea, couldnt eat. My anxiety went mental. Not sure if it was due to the continuous utrogestan, (as I always felt my anxiety got worse when on the 2 weeks of untrogestan previously), or my ongoing worry that nothing is improving my cystitis, UTI feelings with horrendous external burning. I was so bad that my husband had to ring for an emergency GP appointment.
I spoke my my gp and she suggested antidepressents to a) help anxiety and b) reduce nerve pain of external possible vulvodynia and bladder pain. I reluctantly took 5 days of them. Duloxetine. By day 5 I was more anxious than ever. She did say I may get worse for 2 weeks but I was nearly vomitting with anxiety and panic attacks. So again, another appointment with my GP and she said I could have a progesterone intolerance, only because I said "could it be the utrogestan since going continuous". She suggested the following, which I am still pretty worried about. I come off utrogestan, have a 3 month (13 week) long cycle to see if my anxiety and bladder improves, then I go on a 2 week Provera progesterone at 10mg per day (quite high). If I have no bleeds during or after withdrawal, then my lining will be very thin which we want. She also said come off the antidepressants.
So 2 weeks in, after coming off utrogestan, my anxiety has improved a lot, but my bladder and burning issue still remain. I suppose it's only been 2 weeks.
Tomorrow I get the results of a recent blood test to test my testosterone, to see if that is low enough to have replacement which could improve bladder. Because I have been using vagirux daily since end of November 23 and previously every other day since may 23. Which recently is not improving it.
I am still so incredibly torn about all this HRT. I do not want the Merina because it will be permanent progesterone, synthetic, plus right next to my bladder. I don't want to end up on continuous synthetic provera either. I can't use utrogestan vaginally because of my bladder issues which will override all the vagirux replacement.
I am now looking into functional medicine doctors who are completely against mainstream HRT and recommend Prognelonone/DHEA.
I honestly feel like my life is over and I will be stuck with this bladder issue and burning for the rest of my life. I am 53 and dread what is to come in the next few years.
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Has any1 referred U to a dedicated menopause clinic? Not a Gynaecologist as they often don't know as much about HRT and VA as some GPs seem to!
With that regime you need to begin appropriate vaginal atrophy treatment - it may sting initially but will settle after a few nights, 'ovestin' suits me. Along with KY jelly when required or a smear of 'ovestin' around the outer vulval areas. Also taking pain relief to ease that nip as the urine flow shuts off can help a lot.
The Mirena should not impact on bladder issues. It can be removed if necessary. Keeping a diary can help especially to discuss with a functional medical GP so that nothing is forgotten.
Let us know how you get on. Also there is a private FB group dedicated to vaginal atrophy which you may find of use.
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Thanks, no I have not been referred to a private menopause clinic. That is on one of my possible solutions to do, maybe with Newson health. But Stratford on Avon is a long way from me.
I have been using Ovestin externally since mid December last year, it did initially help with the burning, but it is still there all the time, even though I use it every single night.
I have been using Yes OB which really eases the burning to some extent, but I have to keep re-applying it every single time I have a wee. Or I really feel the burning which seems to trigger my bladder. Which means applying it sometimes 6 to 7 times per day which is really inconvenient.
It’s like I have to cover the urethra and vestibule with it to prevent friction or else nerves get activated right up my urethra and into bladder. Like full bladder sensation and need to wee when I don’t really need to go. I don’t get pain when urinating though. All this and I’ve been using vagirux since May 23. Even daily since end of November 23. :'(
I tried Yes WB (water based) in December but it made the burning worse, stung and didn’t last.
Gp checked me externally in January and said I appeared well oestrogenised due to Ovestin. I’ve not had an internal exam though.
I will update soon with my testosterone results.
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It mayB that the 'vagirux' simply isn't strong enough. MayB use 'ovestin' internally and externally instead for 5 nights, 2 C if the vagina reacts differently.
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SaraUK, your story sounds so much like mine, and you’re where I was in January. I was suffering very badly with my bladder and external burning and had had vulvodynia suggested and been given amitryptiline (which I never took). It was all uncontrolled VA, but now I am completely fine again.
I added testosterone into my regime December 13 - got Androfemme from Newson Health (they have clinics across the UK, not just in Stratford Upon Avon and also do online consultations). Then at the end of December I switched to Intrarosa (from Imvaggis). It took about 6 weeks, but since early February I’ve been fine - better than fine - no bladder issues, no external burning, and I even have a libido again. No adverse effects from the testosterone.
The only watch out I have is that I was put on continuous utrogestan (I have Estradot 100mg for my oestrogen) and after six weeks had horrible breakthrough bleeding that went on for days. That was messing with my microbiome and started to make me sore so I’ve gone back to cyclical utrogestan- I’m peri and my own cycles were too much for continuous.
You can and will feel better, I promise.
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Oh that is great to hear! I’m so glad you got relief. Today I get my testosterone blood test results to determine if nhs can give me testosterone (for libido only >:().
I’ve been on cyclic utrogestan for 2 years and my last period was October last year, hence why I’ve been changed to continuous utrogestan, but it was horrendous anxiety after 4 weeks of it, on top of this bladder and burning issue that sent me over the edge. So who knows what type of progesterone I can go on continuously.
I’ll post later with an update.
If no joy, I’ll contact newson health for a consultation with Louise newson.
Thanks 🙏
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SaraUK, your story sounds so much like mine, and you’re where I was in January. I was suffering very badly with my bladder and external burning and had had vulvodynia suggested and been given amitryptiline (which I never took). It was all uncontrolled VA, but now I am completely fine again.
I added testosterone into my regime December 13 - got Androfemme from Newson Health (they have clinics across the UK, not just in Stratford Upon Avon and also do online consultations). Then at the end of December I switched to Intrarosa (from Imvaggis). It took about 6 weeks, but since early February I’ve been fine - better than fine - no bladder issues, no external burning, and I even have a libido again. No adverse effects from the testosterone.
The only watch out I have is that I was put on continuous utrogestan (I have Estradot 100mg for my oestrogen) and after six weeks had horrible breakthrough bleeding that went on for days. That was messing with my microbiome and started to make me sore so I’ve gone back to cyclical utrogestan- I’m peri and my own cycles were too much for continuous.
You can and will feel better, I promise.
I forgot to ask. Did you take utrogestan orally or vaginally continuously when your soreness came back?
With my bladder as it is, I couldn’t cope with vaginally or it will undo all the good work that intrarosa May give.
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If the other regime was working why was there a need to change ? :-\
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SaraUK, your story sounds so much like mine, and you’re where I was in January. I was suffering very badly with my bladder and external burning and had had vulvodynia suggested and been given amitryptiline (which I never took). It was all uncontrolled VA, but now I am completely fine again.
I added testosterone into my regime December 13 - got Androfemme from Newson Health (they have clinics across the UK, not just in Stratford Upon Avon and also do online consultations). Then at the end of December I switched to Intrarosa (from Imvaggis). It took about 6 weeks, but since early February I’ve been fine - better than fine - no bladder issues, no external burning, and I even have a libido again. No adverse effects from the testosterone.
The only watch out I have is that I was put on continuous utrogestan (I have Estradot 100mg for my oestrogen) and after six weeks had horrible breakthrough bleeding that went on for days. That was messing with my microbiome and started to make me sore so I’ve gone back to cyclical utrogestan- I’m peri and my own cycles were too much for continuous.
You can and will feel better, I promise.
I forgot to ask. Did you take utrogestan orally or vaginally continuously when your soreness came back?
With my bladder as it is, I couldn’t cope with vaginally or it will undo all the good work that intrarosa May give.
Orally. I only ended up a bit sore because of the breakthrough bleeding I think, and it wasn’t bad sore, just a niggle. I don’t think it had anything to do with the utrogestan directly, but I will say that when I did have bladder issues I used to think it felt a bit worse when I was taking utrogestan. Now my issues are resolved I have no adverse effects from the utrogestan.
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Thanks. Yes I agree. I blamed the utrogestan but I’ve been off it 2 weeks as the start of my long cycle and it’s still bad. I can’t even leave the house. I’m becoming a recluse because of it.
Yesterday I was prescribed testosterone Tostran 2%. I was told it ‘may’ help with bladder. It’s my last hope. She said use it every other day, which is confusing as I’ve read other ladies on here using androfemme at a lower dose 3 times per week.
Did your burning externally improve on testosterone? And why did they change you onto intrarosa from testosterone gel?
Also as you’re on a 100 patch (approx 4pump Oestrogel equivalent), what dose of utrogestan are you on because my gp said I can’t up to 4 pumps unless I double up my utrogestan which I really don’t want to.
Thanks
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If the other regime was working why was there a need to change ? :-\
Do you mean my original cyclic regime on utrogestan and 2 oestrogel pumps? If so that’s when my bladder and burning issues started (after a year and a half of being ok).
I upped to 3 pumps in January and it’s made no difference. Dr said I can’t do 4 pumps unless I double up my utrogestan but I already suffer with horrible anxiety by the end of the 2 weeks. I was put on continuous but suffered horrific shaking sweating anxiety after 6 weeks of it.
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It mayB that the 'vagirux' simply isn't strong enough. MayB use 'ovestin' internally and externally instead for 5 nights, 2 C if the vagina reacts differently.
Isn’t Vagirux/vagifem a higher dose of estadiol at 10mcg compared to lower ovestin at 0.1% estriol?
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As a follow up, I was prescribed steroid cream for 5-7 days to treat mild lichen sclerosis. I was examined and nurse said there’s nothing obviously LS but a very slight pale patch. 7 days late no change, still burning down there. :'(
I went for an ultrasound of my bladder and pelvis recently and nothing was noted about bladder but they say two uterine fibroids. One 5cm and one 1cm. Now I’m freaking out because I don’t know if that’s causing my bladder issues or if they’ve been there for years. Or did hrt cause it over my 2 years of hrt.
I’ve an appointment with the menopause nurse next week to discuss results.
I’m 6 months without a period, on a long 13 week cycle due to potential progesterone intolerance (see my last posts) age 53. So I’m scared and dropped my oestrogel to one pump from 2.
The ongoing stress of this permanent cystitis feeling, external burning and now diarrhoea (maybe stress related) is making my life miserable. Nothing has worked. Vagifem daily for months, upped dose of oestrgel to 3 pumps, steroid cream, ovestin. I can’t go on like this.
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Hi
I don't know if this has been suggested to you but could you try cyclogest progesterone? It's still a body identical form and it's used in IVF. My sister is having IVF and is on something like 3 x 400mg per day and doesn't get any side effects from it because it's an anal pessary. I know there's some women that get on with it ok even though they can't tolerate utrogestan. Could be worth asking your dr? I also don't know if there would be any bladder issues with using it anally.
I'm very sorry you are going through this :-(
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Thanks. Yes I’ve heard of cyclogest. My main problem now is waiting to speak to menopause nurse about what to do with HRT, now that two fibroids have been found and whether it’s causing my bladder issues. 5cm one sounds pretty big to me. Ugh 😩 I read that both oestrogen and progesterone contribute to fibroid growth.