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[SaraUK]

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?

[joziel]

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 

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 

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.

[SaraUK]

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.

[CLKD]

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. 

[SaraUK]

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.

[CLKD]

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. 

[sfreesto]

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.

[SaraUK]

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 🙏

[SaraUK]

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.

[CLKD]

If the other regime was working why was there a need to change ? 

[sfreesto]

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.

[SaraUK]

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

[SaraUK]

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.

[SaraUK]

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?

[SaraUK]

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.