Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: SaraUK on May 11, 2024, 03:51:49 PM
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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. :'(
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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...
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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.
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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.
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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.
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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.
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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.
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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.
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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. :'(
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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.
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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.
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I’ve even been researching pudendal neuralgia as symptoms sound very similar. Ugh :-\
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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.
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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.
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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.
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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.
Interesting. What were your “high” oestrogen levels? I suppose everyone is different and what’s high for one is low for another. But yes, oestrogen dominance against other hormones can cause issues.
I’m seeing a functional medicine dr in a few months too. They’ll do the Dutch test on all hormones. Maybe look at bio identical hrt (dhea, pregnalonone, progest E), Maybe suit me better. Who knows.
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"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."
This is so silly of your doctor. With estradiol of 159, you are very very low. You need a minimum of 250 for bone health and all the protective effects of HRT. So you are basically not on any HRT at the moment, as far as what your body is aware of.... It might not fix your vaginal symptoms - but it might(!) - and anyway, it's going to protect your bones, heart, brain etc etc.
I think your best bet is to see a private menopause clinic really. They will be prepared to allow you to remain on the same utrogestan because your serum estradiol is only 159, so you really don't need more. (NHS GPs look at dosage and not at what you are actually absorbing because they are a bit "Computer Says No" and don't really understand things well enough to make subtle complex decisions.) You can also be monitored in terms of an ultrasound just to check your lining isn't building up so you don't need more progesterone than you really really need, for that purpose. (By the way, your lining of 2.3mm is not thick at all.)
Another idea is to use a combined patch with a synthetic progestin in it, which isn't going to need to go up your vagina obviously. Again, NHS GPs won't like increasing your E above the 50 in that combined patch but a private clinic will be prepared to give you top up E patches or gel - perhaps again whilst monitoring with ultrasound occasionally.
And then there are other ideas like using desogestrel at double the POP dosage or using norethisterone, again at a higher than POP dosage - again, all things either a specialist NHS menopause clinic or private clinic will offer. There are many 'thinking outside the box' solutions but your regular NHS GP isn't going to know about them.
Getting systemic estrogen does help GSM symptoms in the vagina for sure. I don't need local estrogen anymore, since getting my systemic over about 350pmol (which isn't high). And as I said, all this will offer protective benefits for the future. You for sure don't have 'high' estrogen if these are your levels. And whilst your own ovaries can contribute more, they can't take away from what you are getting from HRT.
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I agree with joziel - if your estradiol level is 159 (pmol/l ?) and your endometrium on your current regime is only 2.3 mm then you should be able to safely increase your oestrogen without needing to add further progesterone. My endometrium has NEVER been that thin on all the 17 years I've been on systemic HRT - and never less than 4.7 mm as far as I recall.
What is your current hRT regime anyway in terms of oestrogen product and dosagem and utrogestan frequency and mode of delivery?
You should not have to seek private treatment - the cost is beyond the reach of most women. It's a pity that Dr Currie has suspended her online service as she is too busy. I am wondering what the protocol is for women to post part of her reply (leaving out any personal stuff) - pertaining to this issue, to help other women and which could potentially be used to take to your doc? Probably as it's a forum, GPs would not accept it....
Oestrogen dominance is not an issue in your case - because your endometrium is very thin and therefore you appear to be taking more than enough progesterone to balance the oestrogen. It is more likely to be insufficient oestrogen per se which is borne out by your lowish levels - they they are above post-menopausal levels.
Dont give up hope! There is a solution out there for you, but it may take a little more time...
All the best
Hurdity x
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I would think that it is absolutely fine to copy/paste any responses from professionals unless someone is told 'in confidence'. After all we discuss the ins and outs of what we are told by other Medics either on line or in person.
Don't give up hope. Keep posting, asking, moaning etc., some1 is usually around ;-)
Being unwell can be draining and despondency may kick in ........
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Thank you soooooo much ladies for responses.
Thinking back, do you think my slight improvement has been from going on the long 12 week progesterone free cycle, compared to me reducing oestrogen gel and stopping topicals?
Maybe the generic dose of 100mg utrogestan daily is too much for me as I’m a low absorber? Hence the progesterone intolerance symptoms?
I wonder if I could try going back on utrogestan continuously after going back on oestrogel x 3-4 pumps per day first for a few weeks?
I’d love to know what dose of utrogestan most ladies are on who are on 4 pumps of gel? It seems overkill to double up progesterone when going from 3 to 4 pumps (as insisted by meno nurse).
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Sara, you have to understand that the advice to increase P when you increase E is on the assumption that women are actually absorbing the E well and therefore their serum levels are going up. If your serum E is 150pmol then you're not really absorbing it. Other women out there are on 2 pumps of gel and 100mg utrogestan and their serum levels are 450pmol. They don't need to increase their P. Because they are only on 2 pumps of gel. But their serum is 450..... this is why looking at dosage rather than serum levels is insane.
If I were you (this is not advice, it's literally what I would do if I were you), I would increase my E and keep the utrogestan the same. If my doctor wanted me to take more utrogestan I would tell a porkie pie, get the prescription for it but not actually take it. If I then got any problematic bleeding in future, I would revisit and reconsider all this. By the way, bleeding within 3 months of increasing your estrogen or changing products doesn't count - so ignore that - that's just settling down bleeding, I mean after that....
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Sara, you have to understand that the advice to increase P when you increase E is on the assumption that women are actually absorbing the E well and therefore their serum levels are going up. If your serum E is 150pmol then you're not really absorbing it. Other women out there are on 2 pumps of gel and 100mg utrogestan and their serum levels are 450pmol. They don't need to increase their P. Because they are only on 2 pumps of gel. But their serum is 450..... this is why looking at dosage rather than serum levels is insane.
If I were you (this is not advice, it's literally what I would do if I were you), I would increase my E and keep the utrogestan the same. If my doctor wanted me to take more utrogestan I would tell a porkie pie, get the prescription for it but not actually take it. If I then got any problematic bleeding in future, I would revisit and reconsider all this. By the way, bleeding within 3 months of increasing your estrogen or changing products doesn't count - so ignore that - that's just settling down bleeding, I mean after that....
Thanks. That all makes complete sense. I am quite slim so wonder if lower body fat on thighs reduces E absorption?
I am currently at week 10 of 12 without any progesterone and just started the two week provera phase (10mg daily for 14 days). I’ve not experienced any progesterone intolerance yet but only on day 5.
I’m a bit scared of getting back on utrogestan continuously at 100mg due to my horrible time after 6 weeks which nurse put down to P intolerance.
One other issue is I’ve got two fibroids (5cm top, 1cm back wall). I’m also worried that they will grow bigger if I increase E?
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Right, sorry I thought you were on utrogestan - with what I said, I mean I would just increase E and keep whatever you're doing with P the same. You could get your GP to check E bloods again after a few months (preferably during your period when your own E is lowest) but it's not likely to go stratospheric.
Some fibroids grow on estrogen and some really don't at all. Currently there is zero understanding about why some do and some don't.
No idea about being slim, but I'm also quite slim and absorb poorly, so maybe you're onto something.
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Just to add to the other replies, I'm quite happy to post the relevant parts of my email reply from Dr Currie or forward my whole email if anyone wants to pm me with their email addresses. Anything that helps.
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Right, sorry I thought you were on utrogestan - with what I said, I mean I would just increase E and keep whatever you're doing with P the same. You could get your GP to check E bloods again after a few months (preferably during your period when your own E is lowest) but it's not likely to go stratospheric.
Some fibroids grow on estrogen and some really don't at all. Currently there is zero understanding about why some do and some don't.
No idea about being slim, but I'm also quite slim and absorb poorly, so maybe you're onto something.
Thanks. I actually spoke to the menopause nurse today and she has suggested doing a blood test to test my current estrogen and testosterone as I explained how I don’t think I’m absorbing it.
She also informed me that long cycles of unopposed E are no longer Sufi due to new uk guidelines. So I’ll need to sort something out about that soon.
Even my meno nurse is restricted in even prescribing me blissel gel to try. Apparently not approved for prescribing in my area :(
I will be very interesting to see how rock bottom my numbers will be on one pump, compared to when I was only 159 on 3 pumps. :-\
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Just to add to the other replies, I'm quite happy to post the relevant parts of my email reply from Dr Currie or forward my whole email if anyone wants to pm me with their email addresses. Anything that helps.
Hi, thanks. I tried to pm you but it wouldn’t let me for some reason. :(
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new uk guidelines. many regimes are given 'off licence' anyway. Did the Nurse give you a copy of these? Nurse Practitioners are able to prescribe many medications, this Nurse may not have taken enough extra training in order 2 prescribe :-\. I would have thought that HRT was standard across the Country: 'not approved in your area' R U in Scotland where Rules are different?
it should be this difficult :poke2: :bang:
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new uk guidelines. many regimes are given 'off licence' anyway. Did the Nurse give you a copy of these? Nurse Practitioners are able to prescribe many medications, this Nurse may not have taken enough extra training in order 2 prescribe :-\. I would have thought that HRT was standard across the Country: 'not approved in your area' R U in Scotland where Rules are different?
it should be this difficult :poke2: :bang:
I’m in Cheshire. She normally prescribes most thing, but Blissel gel had a note on saying “not for prescribing”. I don’t understand why some gp areas are different.
Any ideas how I can get hold of this to at least test and no doubt add it to my drawer of many topicals that make my burning worse :-\
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Hi
I don't know if this would help you as a suggestion .... I had similiar problems for months and as a last resort my doctor prescribe me trimovate cream ( which babies get apparently) - solved all my external irritation. Maybe worth a go?
J
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Here's the relevant bits of the reply to my email:
- If you have vaginal dryness you should be offered vaginal oestrogen, which is put directly into the vagina as a pessary, cream or a vaginal ring. You can use vaginal oestrogen for as long as you need to, even if you are already using HRT. Moisturisers and lubricants can also help. If vaginal oestrogen doesn't help to start with you may be offered a higher dose.
Previously we often used Vagifem 25 twice weekly, which provided 50mcg of estradiol per week. There were no concerns about the safety of this, it was taken off the market because of economics. Vagifem 10 or Vagirux 10 used twice weekly provides only 20mcg of estradiol per week. The option of up to 5 times weekly is therefore just replacing the same amount as we used previously. Perhaps 3 to 4 times weekly will be enough. Please feel free to share this information with your GP, including the NICE reference.
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Here's the relevant bits of the reply to my email:
- If you have vaginal dryness you should be offered vaginal oestrogen, which is put directly into the vagina as a pessary, cream or a vaginal ring. You can use vaginal oestrogen for as long as you need to, even if you are already using HRT. Moisturisers and lubricants can also help. If vaginal oestrogen doesn't help to start with you may be offered a higher dose.
Previously we often used Vagifem 25 twice weekly, which provided 50mcg of estradiol per week. There were no concerns about the safety of this, it was taken off the market because of economics. Vagifem 10 or Vagirux 10 used twice weekly provides only 20mcg of estradiol per week. The option of up to 5 times weekly is therefore just replacing the same amount as we used previously. Perhaps 3 to 4 times weekly will be enough. Please feel free to share this information with your GP, including the NICE reference.
Thanks, but I used vagirux daily, 7 days per week for 4 months and 4 times weekly prior to that for 7 months when I only had the bladder issue. Also ovestin external too for 4 months. The burning started when I went on vagirux daily after 2 weeks, which I only went on because of bladder issue, which has never been solved.
To date I’m on none and bladder burning the same. It’s such a tedious situation that just won’t go away no matter what I do.
I wonder if the vagirux has damaged my tissues and nerves permanently.
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Hi
I don't know if this would help you as a suggestion .... I had similiar problems for months and as a last resort my doctor prescribe me trimovate cream ( which babies get apparently) - solved all my external irritation. Maybe worth a go?
J
Thanks. I was prescribed Betamethasone which is a strong steroid and used it for the maximum 7 days. It very slightly reduced burning but not much.
How long did you use it for?
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Sara have you actually been to a Menopause consultant/specialist at your hospital? Sorry I may have missed if you said so. If you haven't, it sounds to me as if it's all guesswork. Again, forgive me if I've missed that you say you have.
If not, you really do need to see one. Prior to me getting on the right treatment my GP and gynaecologist diagnosed a variety of different conditions ( none of which I actually had) and you do tend to start reading online, as you have, and find there are a myriad of conditions with similar symptoms. You mentioned using a steroid cream and I used a number of different ones, obviously all prescribed by different specialists, for a number of years. I think they caused a lot of tissue damage and made everything very sensitive when I started using VA treatments.
But again all this is guesswork. You really need a dedicated specialist, not a gynaecologist, to get to the bottom of what you actually have. You can end up doing more harm than good, as I did, in the end.
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VA needs management. Some products give better results than others might do. I use 'ovestin' internally and when necessary on the labial area. Or KY Jelly there. Others find that a regime of 'vagifem' internally with 'ovestin' smeared outside helps.
Some find that they might be sensitive to the fillers/packaing of the VA treatment. When I get bad symptoms I insert 'ovestin' mid afternoon, swallow 2 Nurofen and repeat at night. Do read 'the bladder issues' and the VA threads as there will be experiences shared there too. A referral to a dedicated menopause clinic - not a gynae - will give you access to advice.
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Sara have you actually been to a Menopause consultant/specialist at your hospital? Sorry I may have missed if you said so. If you haven't, it sounds to me as if it's all guesswork. Again, forgive me if I've missed that you say you have.
If not, you really do need to see one. Prior to me getting on the right treatment my GP and gynaecologist diagnosed a variety of different conditions ( none of which I actually had) and you do tend to start reading online, as you have, and find there are a myriad of conditions with similar symptoms. You mentioned using a steroid cream and I used a number of different ones, obviously all prescribed by different specialists, for a number of years. I think they caused a lot of tissue damage and made everything very sensitive when I started using VA treatments.
But again all this is guesswork. You really need a dedicated specialist, not a gynaecologist, to get to the bottom of what you actually have. You can end up doing more harm than good, as I did, in the end.
Hi, thanks, no, I have not yet got to seeing a meno specialist. I am still waiting for the results from hospital last week. Should be this Thursday. If no fungal infection, then it must obviously be VA, although I don't have dryness. I am considering Newson Health, but I will soon ask NHS to refer me to a meno specialist before doing that.
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VA needs management. Some products give better results than others might do. I use 'ovestin' internally and when necessary on the labial area. Or KY Jelly there. Others find that a regime of 'vagifem' internally with 'ovestin' smeared outside helps.
Some find that they might be sensitive to the fillers/packaing of the VA treatment. When I get bad symptoms I insert 'ovestin' mid afternoon, swallow 2 Nurofen and repeat at night. Do read 'the bladder issues' and the VA threads as there will be experiences shared there too. A referral to a dedicated menopause clinic - not a gynae - will give you access to advice.
Thanks CLKD, I have tried all those methods for months. I even tried ovestin externally a bit last night, as it's been weeks that I haven't used anything. Today, burning just as much. Nothing works, or it makes it worse. I am at a loss as to what to try next. So far, tried vagirux daily for months, vagifem too, ovestin daily externally, steroid cream for 7 days, tried increasing estrogen from 2 to 3 pumps which I went even worse (anxiety, shaking, sweating, increased burning, same old bladder full, UTI sensations). Nurse suspected progesterone intolerance. Tried long cycle (which no is no longer approved!), stopped all use of topicals and the burning reduced, bladder always the same (although it always follows a bad burning episode, as if nurve pain up the urethra triggers bladder). Even the meno nurse is baffled because I looked well oestrogenised, used daily vagirux/ovestin more than standard for months. I am now wondering if this has even caused the burning issues, like damage to nerves? But the bladder issue only started first a year ago, before vagirux and before I ever had burning issues. The burning only started after 7 months of frequent vagirux use, even before using ovestin.
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Before deciding on Newson Health it may help you to read this thread.
https://www.menopausematters.co.uk/forum/index.php/topic,64837.15.html
A member Primrose3 was advised initially to use 2 Vagifem daily for two months. They may all sing from the same hymn sheet there. ?
(Afraid i questioned it and not my intention but Primrose3 left the forum.)
Just mentioning it as you have already used daily levels of Vagirux for several months and are now wondering if this caused burning. Some find use of Vagirux different to use of Vagifem though.
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Good advice Minusminnie - when tissues are thin they may react with stinging when anything is applied. Sticking with one product for 3 months plus moisturiser should ease symptoms, if U are continuing with burning and urine samples are clear of bugs: so no embedded infection: then upping the VA treatment might help.
A urologist with knowledge of menopause could be another option, mayB ring round your local hospitals to see if there are any Consultants with an interest in womens' health. No one should have to suffer with this condition! It can become all consuming.
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Sara UK I was just trying to forewarn you (going by Primrose3’s posts ) that you may find that Newson Health advise initial high doses much as you have already experienced with the vagirux but with vagifem and may or may not want to do again.
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Newson will help you find the dose that works for you and if that happens to be higher than the licensed dose, that's fine. They will also listen to your preferences.
It doesn't sound like all the local estrogen in the world is helping much so increasing systemic would be the way forwards especially if serum estradiol is 150ish.
The dose itself is completely irrelevant, it's the serum estradiol which counts.
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Before deciding on Newson Health it may help you to read this thread.
https://www.menopausematters.co.uk/forum/index.php/topic,64837.15.html
A member Primrose3 was advised initially to use 2 Vagifem daily for two months. They may all sing from the same hymn sheet there. ?
(Afraid i questioned it and not my intention but Primrose3 left the forum.)
Just mentioning it as you have already used daily levels of Vagirux for several months and are now wondering if this caused burning. Some find use of Vagirux different to use of Vagifem though.
Yes my concern too. I’ve tried both vagirux then vagifem but same results, horrible burning in the vestibule so bad I’m scared of touching whilst showering. It’s like burning nerve pain.
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Good advice Minusminnie - when tissues are thin they may react with stinging when anything is applied. Sticking with one product for 3 months plus moisturiser should ease symptoms, if U are continuing with burning and urine samples are clear of bugs: so no embedded infection: then upping the VA treatment might help.
A urologist with knowledge of menopause could be another option, mayB ring round your local hospitals to see if there are any Consultants with an interest in womens' health. No one should have to suffer with this condition! It can become all consuming.
I have a private appointment with a gynocologist with an interest in urogyno. It mentioned menopause too on her specialties. I’ve got to wait until June for that.
Honestly it really is consuming me. I’m not working and losing thousands of pounds in income. My husband is worn down too because it’s all I talk about. I can’t think of anything else with a constant urge to pee and a crotch that feels like radiation burns :'(
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Newson will help you find the dose that works for you and if that happens to be higher than the licensed dose, that's fine. They will also listen to your preferences.
It doesn't sound like all the local estrogen in the world is helping much so increasing systemic would be the way forwards especially if serum estradiol is 150ish.
The dose itself is completely irrelevant, it's the serum estradiol which counts.
Yes thanks, increasing my systemic would be the next option but as I’m progesterone intolerant and have two fibroids (5cm and 1cm) it’s complicated.
I don’t want a Mirena (synthetic, permanent and right next to bladder). Vaginal utrogestan the same. Taking continuous utrogestan was horrendous at week 6 whilst even upping to 3pumps (that was when my bloods showed 159 Estrogen after 2 weeks on this).
Gp won’t approve anything over 3 pumps unless progesterone is doubled up. Seems crazy and not an option for me. I expressed this, so that’s why she suggested new bloods. Maybe this silly rule could be overturned if I’m not absorbing.
I wonder if I can go back to cyclic even post meno (last period oct 23), but it was a withdrawal bleed anyway. Seems coincidental that bladder symptoms came back in November and burning started December.
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:hug:
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
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I believe that some ladies insert a small dab of moisturiser inside, B4 using the VA treatment.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
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I would definitely consider the thrush option - I personally didn't bother with testing when I got a sudden onset of atrocious burning etc and no systemic or local E2 helped. I bought an otc kit with a cream and capsule and it gave almost immediate relief.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
Thanks. I did read about that and as I do suffer with anxiety it’s possible. When I get anxious the burning and bladder flares up. It’s up and down each day. I’m still waiting for a basic diagnosis before asking for that. How does it work and is it on nhs or private?
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I believe that some ladies insert a small dab of moisturiser inside, B4 using the VA treatment.
I can’t even use moisturisers, the only one that didn’t react but also didn’t do much to improve anything either was yes OB.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
Ah interesting because that might explain why I improved off the topicals and it never got worse.
Incidentally I’m now on day 7 of provera on my long 13 week cycle and my bladder is playing up more along with the burning on and off all day.
I wonder if progesterone irritates nerves or even caused the whole bladder thing. If so, I don’t know what hrt I’ll be able to tolerate.
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I would definitely consider the thrush option - I personally didn't bother with testing when I got a sudden onset of atrocious burning etc and no systemic or local E2 helped. I bought an otc kit with a cream and capsule and it gave almost immediate relief.
I’ve actually got the same kit at home ready. I’m just waiting for confirmation that it’s thrush tomorrow before I use it.
God I really hope it is. That would be easy to get rid of. I’d be celebrating if it’s just that, after 5 months of hell.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.
One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.
I started breathing exercises last month, maybe that might help.
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Another suggestion Sara that really helped me, I was 12 years with incorrect diagnosis, is Locoid cream. It's available online and not too expensive. It's a local anaesthetic and I will warn you it stings and burns like crazy when you apply it but the relief is wonderful. It only stings for seconds and then everything gets beautifully numb. Once things are numb you can apply a little more without the stinging.
My GP initially gave it to me on prescription just so I could get some pain relief. My gynaecologist prescribed it because she insisted I had vulvadynia and I disagreed. I mentioned using Locoid so she said to try it again to prove her diagnosis correct - vulvadynia is nerve pain and a local anaesthetic wouldn't stop the pain. Obviously it worked and proved her wrong!
Just a suggestion because the GP and gynaecologist told me to use it as often as I wanted a break from the pain. It really seemed to calm things down after a while, particularly the urethra issues.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
Ah interesting because that might explain why I improved off the topicals and it never got worse.
Incidentally I’m now on day 7 of provera on my long 13 week cycle and my bladder is playing up more along with the burning on and off all day.
I wonder if progesterone irritates nerves or even caused the whole bladder thing. If so, I don’t know what hrt I’ll be able to tolerate.
Afraid I can’t answer you on that one as I have only ever used localised hrt.
I saw two women’s health physios several years ago now. The second one did myofacial release and could tell me where I had some muscle tightening. I went to first referred on from GP second one I self referred privately.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.
One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.
I started breathing exercises last month, maybe that might help.
Tension or stress does make things worse. Distraction has always helped me where your mind goes off away elsewhere.
If it is the wee hitting the vestibule area that is sore some sort of barrier cream may help if you can tolerate it. I’ve used aproderm barrier cream at times on the vulva with some success.
Hope that you start to get some answers at your appointment in June.
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SaraUK,
I've struggled a long time with symptoms throughout the whole pelvic floor. My first obvious symptom was urgency/frequency and started after a stressful event. The burning and soreness followed that. I have had painful spasms as well though not often. Having the condition itself is stressful and so the tension thing makes sense to me.
VA treatment doesn't stop the burning - I'm no different with that symptom on or off it - but I am going to continue as it helps the atrophy. Any water-based stuff on the vulva just stings because the skin is so dry. I need a suitable oil-based moisturiser to protect from the wee and friction. I also identify with the first thing in the morning thing and assume it's because the muscles relax whilst I'm asleep.
I asked for an NHS Womens Health Physio appointment but it never materialised. You could try asking your GP if you could get an NHS one. We haven't one locally - NHS or private - so I was going to travel but as I saw a book mentioned in a newspaper article, I think, and I thought I'd give it a go. Heal Pelvic Pain (not sure if I'm allowed to 'advertise' so won't put the author but a google brings it up anyway!). Only got it yesterday. It's very interesting and I identify with the symptoms. I've started the relaxation exercises - going to persevere - and there are things to be mindful of doing throughout the day to relax. If I had a face-to-face appointment I'm sure I'd have to do this 'homework' anyway.
Jilly Bond's YouTube videos on the same subject are interesting too.
I hope you find some relief.
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:thankyou:
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SaraUK,
I've struggled a long time with symptoms throughout the whole pelvic floor. My first obvious symptom was urgency/frequency and started after a stressful event. The burning and soreness followed that. I have had painful spasms as well though not often. Having the condition itself is stressful and so the tension thing makes sense to me.
VA treatment doesn't stop the burning - I'm no different with that symptom on or off it - but I am going to continue as it helps the atrophy. Any water-based stuff on the vulva just stings because the skin is so dry. I need a suitable oil-based moisturiser to protect from the wee and friction. I also identify with the first thing in the morning thing and assume it's because the muscles relax whilst I'm asleep.
I asked for an NHS Womens Health Physio appointment but it never materialised. You could try asking your GP if you could get an NHS one. We haven't one locally - NHS or private - so I was going to travel but as I saw a book mentioned in a newspaper article, I think, and I thought I'd give it a go. Heal Pelvic Pain (not sure if I'm allowed to 'advertise' so won't put the author but a google brings it up anyway!). Only got it yesterday. It's very interesting and I identify with the symptoms. I've started the relaxation exercises - going to persevere - and there are things to be mindful of doing throughout the day to relax. If I had a face-to-face appointment I'm sure I'd have to do this 'homework' anyway.
Jilly Bond's YouTube videos on the same subject are interesting too.
I hope you find some relief.
Thank you soooo much. Yes you sound very similar to me. I’ll look into the book, I’ll try anything right now.
I think all the appointments and prodding has sent my anxiety through the roof too.
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SaraUK,
Have you considered a Women's Health Physio? They can help with a pelvic floor that is too tight - causes burning, urgency, etc.
Apologies if you've already mentioned it.
I second that. Irritated nerves can cause muscles to tighten a physio told me that tight muscles can cause a burning feeling too. Think you already think that use of different products may have irritated.
Thinking more about the tight muscles thing, my bladder issues started at a time of being exhausted with overworking. I have a business and was pushing myself too hard. I was also trying to meet deadlines before going abroad on hol 5 days later.
One other strange thing that I experience now is that when I eat a meal, it eases off, like a bowel relaxation connection. When I’m tense it flares up. Also when I lie flat with a heat pack it helps. I’m always ok when getting up in the morning but it gets worse after 2nd wee.
I started breathing exercises last month, maybe that might help.
Tension or stress does make things worse. Distraction has always helped me where your mind goes off away elsewhere.
If it is the wee hitting the vestibule area that is sore some sort of barrier cream may help if you can tolerate it. I’ve used aproderm barrier cream at times on the vulva with some success.
Hope that you start to get some answers at your appointment in June.
Thank you sooo much. I’ll look at trying the barrier cream too.
I’ll keep you posted on my ongoing journey x
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If you look up the POGP website you can find a pelvic physio in your postcode area.