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[SaraUK]

Started hrt 2 years ago (oestrogel 2 pumps/utrogestan cyclic).

1 year ago I started with uti symptoms (urge to wee after weeing and bladder awareness). Was prescribed vagifem. I needed every other day to stop symptoms.

6 months later it all returns. Went on daily vagirux. 2 weeks later horrendous external burning started. Like terrible thrush feeling.

Systemic hrt changed to 3 pumps with continuous utrogestan. No improvement what so ever, in fact worse, especially burning and anxiety.

I was then put on testosterone.

2 months ago I had enough and dropped my oestrogel to 1 pump and was put on a long 12 week cycle with 2 weeks provera due to possible progesterone intolerance. Nothing has gone worse, in fact a slight improvement. But burning and bladder issues there daily.

After many exams at gp, Last week I had a gynocology appointment. I was 2 nurses. They said no obvious signs of atrophy but there’s red inflammation. I asked could it be thrush all along and could hrt cause it? They didn’t know and asked a dr. He said yes, hrt can cause thrush.

I’m still waiting for results of swab.

If it’s not thrush, and not atrophy, what else could it be? I can’t live like this. I can’t sit, bend, crouch or even wear underwear. I’m soooo depressed. When it flares up I feel absolutely exhausted.

I’m running out of hope. 

[joziel]

You've not mentioned a single blood test in all that.

Are you actually absorbing the systemic estrogen you've been taking? And have you been given any external local estrogen to apply to the vulva, like Ovestin??

I'm on 10 pumps of Oestrogel to get to about 430pmol. I needed local estrogen until about 5 pumps of gel.

And as for 'no obvious signs of atrophy but red inflammation' - er... that's a sign of dryness and atropy. It was all I had.

Sorry, just been exactly where you are. Treated myself for thrush twice. Had two different GPs look at it who said they couldn't see much except for soreness. Had one GP prescribe me Vagifem which didn't do much externally. Same GP refused to prescribe me Ovestin as well as Vagifem so it's one of the reasons I went private to Newson Health and got as much Ovestin as I want. It was applying Ovestin twice a day, Vagifem in the evening and YES moisturiser at other times which helped.

Sorry you've been put on starvation rations which are not even treating the external area where the soreness is.

And then.... the 3 pumps of gel that NHS GP was happy to prescribe did nothing for me (inside or out) because I wasn't absorbing it. When I got to 5-6 pumps of gel, I no longer needed all the local estrogen (which I'm very glad of because it was a total faff to put that lot on so many times a day). I'm now on 10 pumps of gel. I just had a smear test and used some Vagifem for a week before, just to make sure it was comfortable. It was totally fine.

You need to demand Ovestin for your external soreness and make sure you are given it liberally so you can use it twice a day. If you need more, you can probably get it online from an online pharmacy if you do an online consultation thing. Or go private to Newson Health if you can. One of the best things I did...

[MrsMitch]

I've been where you are Sarah in that I was in such terrible pain but no GP ever gave the right diagnosis.  I was ready to give up when I found this forum and diagnosed myself with vaginal atrophy.  Even when I told my GP I believed that's what I had, she said as there was very little sign of it, I didn't have it!
But I was given estradiol pessaries and ovestin cream. After taking advi e from Dr Currie on the main website, she said I could well need estradiol daily and although off licence at that dose, it's perfectly safe and I eventually managed to get my GP to prescribe it by forwarding Dr Currie email to me ( unfortunately I understand that service isn't available at the moment).
I've just been to a Menopause consultant at the hospital and she's explained that VA is a lifelong condition that you will always have to treat with the above meds to stay pain free. She gave me a link to do some reading g about VA (GSM BSSM) so have a look there. The NHS guidelines are even there that state " absence of visible signs of atrophy does not mean the patient does not have it'.
If you are fobbed off by your GP,  point them to that website - of which they ought to be aware but many aren't. 
It sounds like that is what you have and as I said, it's often not visible.  But it's vital you get treatment straight away and you may need a high dose.  Lots of us on here do. Ask as many questions here as you need to. Lots and lots of us have atrophy and have had a long difficult road to getting diagnosis and treatment.  Take a look at the thread "The burning club" its all about VA so it should help you.
But most of all, don't worry. There is treatment and it is successful.  You can be pain free. Mine was undiagnosed for 12 years but now I'm just starting to get comfortable now I'm treating it correctly. 
Arm yourself with as much knowledge as you can about it so you can tell your GP what you need/want and above all are entitled to.

[CLKD]

Using VA treatment every night is the way many of us keep symptoms under control.  Some find that using 'ovestin', 'yes' or 'slyc' products on the outer areas useful too.

When I get the need2P symptoms I swallow 2 Nurofen 3 times a day to stop the nip as the urine flow stops.

You need to be seen by a dedicated menopause clinic as quite honestly in general, gynae Staff have little or no knowledge about atrophy - as you have found.  "red inflammation" = early signs of atrophy and HRT very rarely causes thrush.

Did the Nurse take a sample 2 check for thrush or were they really not clued up at all?

Get that VA treatment up there Girl ;-).  Let us know how you get on.

[Wren]

SaraUK, I just want to highlight what joziel mentions re YES moisturiser.

My VA symptoms are external and bladder frequency.  I use Ovestin daily externally followed by a moisturiser.
I struggle to get it under control and have trouble walking, sleeping, etc.

I too recently upped the pessaries to nightly (previously 3/4 per week) and have a similar reaction to you - increased bladder sensitivity and a sore, burning patch externally in that area.  It feels tight, like sunburn - my normal VA symptoms but worse.   In desperation I did a urine sample 2 days ago but expect it to be ok.  I also started to lose all hope - don't know where I'd be without what I've learnt on this forum.

Having read on here that the fillers in local oestrogen may be irritating to some and that an internal moisturiser could help, I've started YES VM internally every morning to 'dilute' the fillers from the nightly pessary.  I've previously used it but not on a regular basis.  I use the Ovestin application to insert it.  I've only been doing it 3 days but I think it's helping - have less frequency and the soreness is more comfortable. 

I've always used an emolient externally or YES oil based after the bit of Ovestin has sunk in.  But when I'm sore I don't know if the emolient irritates so I'm using the YES oil based only on the very sore patch at the moment.

Let's not lose hope.


 

[SaraUK]

You've not mentioned a single blood test in all that.

Are you actually absorbing the systemic estrogen you've been taking? And have you been given any external local estrogen to apply to the vulva, like Ovestin??

I'm on 10 pumps of Oestrogel to get to about 430pmol. I needed local estrogen until about 5 pumps of gel.

And as for 'no obvious signs of atrophy but red inflammation' - er... that's a sign of dryness and atropy. It was all I had.

Sorry, just been exactly where you are. Treated myself for thrush twice. Had two different GPs look at it who said they couldn't see much except for soreness. Had one GP prescribe me Vagifem which didn't do much externally. Same GP refused to prescribe me Ovestin as well as Vagifem so it's one of the reasons I went private to Newson Health and got as much Ovestin as I want. It was applying Ovestin twice a day, Vagifem in the evening and YES moisturiser at other times which helped.

Sorry you've been put on starvation rations which are not even treating the external area where the soreness is.

And then.... the 3 pumps of gel that NHS GP was happy to prescribe did nothing for me (inside or out) because I wasn't absorbing it. When I got to 5-6 pumps of gel, I no longer needed all the local estrogen (which I'm very glad of because it was a total faff to put that lot on so many times a day). I'm now on 10 pumps of gel. I just had a smear test and used some Vagifem for a week before, just to make sure it was comfortable. It was totally fine.

You need to demand Ovestin for your external soreness and make sure you are given it liberally so you can use it twice a day. If you need more, you can probably get it online from an online pharmacy if you do an online consultation thing. Or go private to Newson Health if you can. One of the best things I did...

Hi, I’ve been on vagirux since a year ago using every other day (4-5 times per week). Daily since end of November for 3.5 months. I’ve used ovestin daily for 3 months too.

Blood test January, estradiol of 159. I asked to increase to more pumps than 3 and was told that I’d have to double up my utrogestan (progesterone intolerant so impossible). Mirena not an option as it’s right near bladder and can cause bladder issues. Utrogestan vaginally, again no, same problem.

[SaraUK]

You've not mentioned a single blood test in all that.

Are you actually absorbing the systemic estrogen you've been taking? And have you been given any external local estrogen to apply to the vulva, like Ovestin??

I'm on 10 pumps of Oestrogel to get to about 430pmol. I needed local estrogen until about 5 pumps of gel.

And as for 'no obvious signs of atrophy but red inflammation' - er... that's a sign of dryness and atropy. It was all I had.

Sorry, just been exactly where you are. Treated myself for thrush twice. Had two different GPs look at it who said they couldn't see much except for soreness. Had one GP prescribe me Vagifem which didn't do much externally. Same GP refused to prescribe me Ovestin as well as Vagifem so it's one of the reasons I went private to Newson Health and got as much Ovestin as I want. It was applying Ovestin twice a day, Vagifem in the evening and YES moisturiser at other times which helped.

Sorry you've been put on starvation rations which are not even treating the external area where the soreness is.

And then.... the 3 pumps of gel that NHS GP was happy to prescribe did nothing for me (inside or out) because I wasn't absorbing it. When I got to 5-6 pumps of gel, I no longer needed all the local estrogen (which I'm very glad of because it was a total faff to put that lot on so many times a day). I'm now on 10 pumps of gel. I just had a smear test and used some Vagifem for a week before, just to make sure it was comfortable. It was totally fine.

You need to demand Ovestin for your external soreness and make sure you are given it liberally so you can use it twice a day. If you need more, you can probably get it online from an online pharmacy if you do an online consultation thing. Or go private to Newson Health if you can. One of the best things I did...

I’ve been on off licence daily use of ovestin and vagirux for 3.5 months. Burning went way worse. Reduced when stopping them both and reducing Oestrogel and going on long progesterone free cycle.

[SaraUK]

I've been where you are Sarah in that I was in such terrible pain but no GP ever gave the right diagnosis.  I was ready to give up when I found this forum and diagnosed myself with vaginal atrophy.  Even when I told my GP I believed that's what I had, she said as there was very little sign of it, I didn't have it!
But I was given estradiol pessaries and ovestin cream. After taking advi e from Dr Currie on the main website, she said I could well need estradiol daily and although off licence at that dose, it's perfectly safe and I eventually managed to get my GP to prescribe it by forwarding Dr Currie email to me ( unfortunately I understand that service isn't available at the moment).
I've just been to a Menopause consultant at the hospital and she's explained that VA is a lifelong condition that you will always have to treat with the above meds to stay pain free. She gave me a link to do some reading g about VA (GSM BSSM) so have a look there. The NHS guidelines are even there that state " absence of visible signs of atrophy does not mean the patient does not have it'.
If you are fobbed off by your GP,  point them to that website - of which they ought to be aware but many aren't. 
It sounds like that is what you have and as I said, it's often not visible.  But it's vital you get treatment straight away and you may need a high dose.  Lots of us on here do. Ask as many questions here as you need to. Lots and lots of us have atrophy and have had a long difficult road to getting diagnosis and treatment.  Take a look at the thread "The burning club" its all about VA so it should help you.
But most of all, don't worry. There is treatment and it is successful.  You can be pain free. Mine was undiagnosed for 12 years but now I'm just starting to get comfortable now I'm treating it correctly. 
Arm yourself with as much knowledge as you can about it so you can tell your GP what you need/want and above all are entitled to.

Thanks, but I’ve researched everything to death. Tried maximum vagifem/ovestin for months. All Yes products made burning/stinging worse (yes WB, yes vm). Yes OB was better, but felt better without anything. Even tried organic coconut oil. I Can’t up systemic hrt as I’m progesterone intolerant.

[SaraUK]

SaraUK, I just want to highlight what joziel mentions re YES moisturiser.

My VA symptoms are external and bladder frequency.  I use Ovestin daily externally followed by a moisturiser.
I struggle to get it under control and have trouble walking, sleeping, etc.

I too recently upped the pessaries to nightly (previously 3/4 per week) and have a similar reaction to you - increased bladder sensitivity and a sore, burning patch externally in that area.  It feels tight, like sunburn - my normal VA symptoms but worse.   In desperation I did a urine sample 2 days ago but expect it to be ok.  I also started to lose all hope - don't know where I'd be without what I've learnt on this forum.

Having read on here that the fillers in local oestrogen may be irritating to some and that an internal moisturiser could help, I've started YES VM internally every morning to 'dilute' the fillers from the nightly pessary.  I've previously used it but not on a regular basis.  I use the Ovestin application to insert it.  I've only been doing it 3 days but I think it's helping - have less frequency and the soreness is more comfortable. 

I've always used an emolient externally or YES oil based after the bit of Ovestin has sunk in.  But when I'm sore I don't know if the emolient irritates so I'm using the YES oil based only on the very sore patch at the moment.

Let's not lose hope.


 

Yes, the Yes OB is the only one I can tolerate and even that burns at first. Yes VM burnt like mad along with WB. Ovestin not so bad, but daily use, along with vagirux, I’m sure has burned my tissues. 

[SaraUK]

I forgot to mention I had an ultrasound in March: endometrial thickness of 2.3mm, 2 fibroids, retroverted uterus.

Since mid March, stopping all topicals, reducing Oestrogel to 1 pump, and going on a long cycle off utrogestan, everything has improved a bit, but it’s still a daily occurrence. So how can it definitely be VA if that has happened? I’m so confused.

[SaraUK]

Using VA treatment every night is the way many of us keep symptoms under control.  Some find that using 'ovestin', 'yes' or 'slyc' products on the outer areas useful too.

When I get the need2P symptoms I swallow 2 Nurofen 3 times a day to stop the nip as the urine flow stops.

You need to be seen by a dedicated menopause clinic as quite honestly in general, gynae Staff have little or no knowledge about atrophy - as you have found.  "red inflammation" = early signs of atrophy and HRT very rarely causes thrush.

Did the Nurse take a sample 2 check for thrush or were they really not clued up at all?

Get that VA treatment up there Girl ;-).  Let us know how you get on.

I’ve used everything daily for months, it made burning worse and bladder never responded. Actually improved when dropping hrt and stopping vagifem.

Yes nurse did swab, but only because I asked could it be thrush?

I’m scared of going back on vagifem because of the horrific burning like chemical acid burn that made everything way more redder and inflamed than now.

[SaraUK]

I’ve even been researching pudendal neuralgia as symptoms sound very similar. Ugh 

[Minusminnie]

Going back to your initial post it seems the change from Vagifem to vagirux was when burning & redness was noticeable.
If you do a search on vagirux some threads may come up where members have found vagirux not suitable having previously been given vagifem.

Pudendal neuralgia is usually one sided nerve pain.

[Tulip256]

I found out my bladder pain was caused by histamine intolence caused by too high levels of oestrogen. It completely stopped when I cut out high histamine foods. Just something to consider if people are trying to work out a cause.

[SaraUK]

Going back to your initial post it seems the change from Vagifem to vagirux was when burning & redness was noticeable.
If you do a search on vagirux some threads may come up where members have found vagirux not suitable having previously been given vagifem.

Pudendal neuralgia is usually one sided nerve pain.

Thanks, but it was the opposite way around. I was on vagirux for 10 months, then tried vagifem for 1 month. No change. Burning continued to intensify.