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[SaraUK]

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.

[CLKD]

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 ;-)

[Gnatty]

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

[CLKD]

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.

[Gnatty]

I would say clearly the oestrogen isn't working, already been upped to 3 pumps and she needs help fast

[Gnatty]

Furthermore the Intrarosa isn't the same as taking testosterone. Much lower dose

[CLKD]

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.

[Suziemc]

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

[sheila99]

Estradiol at 159 is low, it might be that you're not absorbing it very well. Do you have other meno symptoms?

[laszla]

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)

[PearlJ]

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.

[joziel]

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.

[SaraUK]

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.

[CLKD]

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 ;-).

[SaraUK]

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.