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[Lesred]

Thank you for kind welcome Wrensong 

That is very interesting re oestrogen as I also found my hay fever symptoms went through the roof this spring summer, I assumed it was a particularly bad year for pollen although I did wonder if it was worse since using the patch! I think you’re right about the balance having to be just right which can be tough to achieve. I also considered D Mannose but perhaps it wouldn’t help!

I have a phone appt with gp on Thursday to review so it’ll be interesting to see what she says, if anything!

Kirsti please keep in touch as to how you get on going forward as I feel we have similar problem, I’m still ok bladder wise this morning, gosh I hope it lasts!! X x

[Wrensong]

Lesred, not all D Mannose is birch derived, but the one I bought unfortunately is.  Many of us have found our hay fever goes stratospheric during menopause.  Mine was very problematic during peri, the worst of my life in fact, especially evenings & overnight, also my worst time for other meno symptoms exacerbating insomnia.  But postmeno, thankfully, the hay fever's calmed a lot.

Please let us know how you get on with the GP.
Wx

[Kirsti]

Hi Wrensong
I will look into D-Mannose, I occasionally get hayfever but it isn't a particular problem luckily.

That is very interesting about the auto-immune link with estrogen, I have come across this when doing some research which is why I am concerned about the Oestrogel I am on. I have also found some reviews on other forums where it is suggested that HRT can exacerbate IC. I have looked at the side effects for all the body identical hrt, they either have vague side effects of the vagina, or weight gain/water retention. I was on Evoril Conti previously and went up two dress sizes in water retention within 4 months, so I feel like I over react to the systemic HRT unfortunately.

Today my boobs and down below have been extremely tingly and feel sore, no burning as such but I have very bad urinary urgency 

It will be disapointing if I can't stay on the HRT as it has helped a lot with anxiety and a little with my dry mouth, however brain fog is still terrible.

As of today my plan is to start to reduce oestrogel pumps from 2 to 1 1/2 in prep for possibly coming off it to see how things go.
I am hoping to get the testosterone though so will try that with the Oestrogel first before finally calling it a day for now.
I can always try again if I need to. If not then I will just have to try supplements etc to help. Hopefully the Vagifem/Vagirux will be ok as I will need to stay on that.

I have heard that coconut mouth pulling can help with dry mouth so I may need to give that a go, what with the pessaries the other end, feel like I need to be dumped into a vat of coconut oil 

I will keep you updated with how I get on.

Lesred, yes I will definitely feed back on how things go as it is very helpful to get as much info on this forum as poss. It does sound like we have a similar problem so I will keep you posted.

Good luck with your docs appointment, let us know how you get on.

Thanks both, Hugs xxx

[Wrensong]

It could well have been the Norethisterone in Evorel Conti that didn't suit you Kirsti.  Lots of women have unwelcome side effects on that. 

Do try testosterone if you can as this may make quite a difference to how you feel on HRT.  It would be a great shame, as you say, if you find you need to stop HRT altogether as oestrogen's beneficial effects are so wide ranging & testosterone too is involved in way more than just the sexual aspects it's most often prescribed for.

The burning & frequency of a persistent IC flare are currently problematic for me too, so I know just how you feel.

Be kind to yourself & rest as much as you can.
Wx

[Kirsti]

Hi Wrensong
Yes I think it was the norethisterone, i didn't feel any benefits at all on conti. I think I'm good with Utrogestan though.

Sorry to hear you have an IC flare up, I hope it improves soon.

After a good night's sleep my symptoms seem calmer today, so fingers crossed for a better day.

I will update again soon.

Xxx

[Lesred]

Well my temporary hiatus didn’t last, sadly it’s as bad as ever today (5 days off the patches) not sure what to do really! Stick patch back on ( not that keen as it was starting to fail on a number of counts) try vagirux again and hope it helps this time and I can keep it going or wait to speak to GP!

Rrr it drives me mad all this, and menopausal indecision on top of it 

Sorry to hear you struggling too Wrensong, it’s such pain ( literally!)

Hope you continue to see light at end of tunnel Kirsti

[Wrensong]

Hi Lesred, have you been on these patches long enough to want to try another HRT product?  I think you said it's Evorel Conti?  It may be that you are not getting very good absorption from it, so not enough systemic oestrogen to help bolster the effects of the vaginal HRT.  Bloods (eventually) showed I was getting poor absorption from EC, which explained why I never had adequate symptom control from that product.  Also the Norethisterone in EC really doesn't agree with some women.  I can't remember whether I found Norethisterone diuretic (I took it in tablet form at one stage too) but progesterone (as opposed to the synthetic variants like N) is known to be, so if frequency is one of your bladder symptoms it seems possible N might have made that worse for you.  I can check my records to see whether I made a note of that if it might help.
Wx

[Lesred]

Oh Wrensong I did wonder that, I’ve been on Everol conti since end of Feb 23 and started to hit problems at end of June? I do think possibly a change in HRT may be the answer and I also thought I read Norethisterone can have a diuretic effect but I may have imagined that. Yes I would definitely be willing to try another HRT so hopefully the GP may be of the same mind.

Thank you again for all your help, it’s keeping me positive 

[Wrensong]

Lesred, I couldn't remember whether I found N as diuretic as Utrogestan, so quickly googled for confirmation before that last post to you, but didn't find what I was looking for.  Progestogens as a class do have a marked diuretic effect on me & seem to irritate the bladder (Utrogestan used vaginally was terrible for that), so it seems likely N was no different.  So yes, well worth trying an alternative I'd say.  The trial & error of HRT can be tiresome but it can pay dividends when we find a fit that we are better with than without, so don't lose hope yet.
Wx

[Lesred]

Thanks for that Wrensong I do wonder if the va treatment counteracts some of that issue with progesterone.

So do you not use Utrogestan either? I do seem to have a rather sensitive bladder! So I just wonder if there is an answer, but as you say it’s a bit trial and error isn’t it?

X x

[Wrensong]

Like yours Lesred, my cystitis goes back decades, preceding menopause by a long way.  My HRT history has been complicated (many changes), partly by the need to find a tolerable progestogen, so a lack of stability in dose & type has probably not been ideal for stabilising the IC.  I was also recently without any vaginal HRT for some weeks & had a bad, persistent UTI during that time & that combination seems to be making it difficult for the GU tract to recover.

No, I don't use Utrogestan - I've had hysterectomy, so thankfully no longer need any form of progesterone.
Wx

[Lesred]

Aah I see but you have had a very similar nightmare to me. It must help not to have to worry about Utrogestan but equally this bladder nightmare never quite sorts itself completely.

However all our experiences shared together can only help us all cope and remain optimistic and I am very grateful for all of the info that’s gathered.

Thank you all for your help and experiences, I will let you know how I get on x x

[Kirsti]

Hi Lesred

Sorry to hear that your symptoms have flared up again, so frustrating and upsetting.

I don't know if this info helps but I didn't do well on Conti either,  although my bladder was ok and the VA, I felt no benefits at all from it after 4 months and went up 2 dress sizes with water retention. I have a history of eating disorders so I really struggled mentally with this. I stopped it Cold Turkey which I think may have been a mistake as 4 months later I started to get dry mouth.
I never had a problem with vagifem though, I have been on it since July 2019 and everything was fine until May 2022, I started to get some little flare ups but they would only last a few days. In hindsight I think I needed to increase my vagifem then, but didn't do so until I was told to by a gynaecologist in Feb this year.
So something happened with my hormones last May, I'm guessing a further drop in estrogen. I 're started hrt again in December 2022 and am on Oestrogel and Utrogestan. Then at the end of December my problems started again and by February I was climbing the walls.
So what is it? The Oestrogel, the Utrogestan, the Vagifem or none of these the only way I will find out is by trial and error unfortunately. For some reason I had a really good day yesterday, but I woke up during the night in a lot of pain so today isn't looking so good.
However the testosterone is on its way.
I am a bit confused as my level is 0.9 within a 0 - 1.8 range but they are sending me some anyway. So I will try it and report back. I've reduced my Oestrogel pump to 1 1/2 and my Amitryptiline from 2 to 1 1/2 too just in case I need to come off. I'll do it gradually this time as recommended.
I hope you get some joy soon, I would say you need the Vagifem or a cream or the estring it is probably finding out which works best for you.
Good luck and keep us posted xxx

[Wrensong]

Yes, good luck Lesred & do let us know how things go for you.

Kirsti, fingers crossed that the changes you are making will help you feel a lot better.  Good that you are able to try T as well.
Wx

[Lesred]

Hello lovely ladies

I thought I’d update you on my doctors phone appt this am and check in as to how you all getting on?

If I’d replied earlier it would’ve been to bang on about how awful my bladder has been until yesterday when it randomly decided to be nice to me, goodness knows why?!

Anyway …
The GP was very nice ( I always feel I don’t get all my worries across though  )  and she has suggested I give systemic HRT a break for 3 months to see how I get on. I think I said the conti patch was starting to play up, and when I looked back at my diary I realised it hadn’t been quite the plain sailing I thought ( CLKD, your diary advice was v helpful!) I also have noticed my allergies are a bit better and I have a lot more energy throughout the day, it may be early days to assume it was all the HRT causing these symptoms though. Re the VA she has suggested I try ovestin again as she thinks it is less harsh on its fillers than vagirux, I blooming hope she’s right and I have more success this time round.

I hope you are getting on well Kirsti? And Wrensong? You too! Thanks again for all support and advice, very gratefully received.

Ps not sure how I feel about giving up on HRT but I guess I can always change my mind can’t I?

Lesred x x