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[Eviepf]

Hello all. This is my first post but I've been browsing the threads on here about VA and topical estrogen. A bit of history (sorry it's long). Since 2011 I've been suffering with bladder/urethral issues, at first 'only' intense urethral stinging/burning, which came and went, but often lasted for weeks at a time, with varying degrees of severity.  I was 54 at the time and still having regular periods, which had been horribly heavy for a few years and were getting worse.

I had a hysterectomy in late 2011 (kept my ovaries) due to massive fibroids and the awful periods. Urethral issues continued and I was prescribed Vagifem - I gave up on this as I wasn't sure whether it was helping - the symptoms had always been intermittent anyway, and I really couldn't tell. This was around the time when the Vagifem dosage went down, which was the final straw for me - the GP didn't want me to use it any more than twice per week and when I saw the dosage reduction I just thought 'what's the point' - if 25 mcg x 2 isn't working, 10 mcg x 2 definitely won't. There was never any real info from GP about how VA might affect the bladder. I hadn't (and never have) been aware of painful vaginal dryness, so thought how could I have this thing called VA?

Symptoms continued intermittently, but got worse around 18 months ago - urethral stinging/burning pretty much all the time, and I had started to have a very heavy watery discharge.  Had previously seen urologists, who were not very helpful, to say the least and diagnosed Painful Bladder Syndrome (aka IC). In late 2015 had a cystoscopy, which showed no issues inside the bladder (no surprise really, as all my symptoms were then urethral). Since then, have tried long-term high-dose antibiotics with a dr in London who believes that imbedded infection is to blame in these cases, but am not really sure if this has had any beneficial effect.

Online, a few months ago, I stumbled on this forum and started reading other info about the menopause/VA and this got me wondering if this might after all be my problem, as I read about the effects of low estrogen on bladder/urethral tissue, not only on the vagina, and also saw accounts from women who seemed to be having exactly the same symptoms as me.  By this time, I was also having occasional urinary frequency and the 'urge-to-pee', which I hadn't had before.  In March this year, I saw a gynae privately, who is very clued up on menopause and HRT. She told me that I should probably have been put on HRT as soon as my symptoms began, and definitely after my hysterectomy. This was not suggested by my doctors at the time..... As I'm now 60, and really too old for full HRT, she recommended an Estring PLUS Vagifem, and said to use both to start with, to try to kickstart things. I had issues with the Estring (using it resulted in an acute UTI) and had to discontinue it after 1 week, but have now been using Vagifem 7 days per week (on gynae's recommendation) since mid-March - around 8 weeks.

I still can't tell if the Vagifem is helping and my question is, can it really take over two months to feel a benefit? Also, can one have no massive vaginal dryness symptoms and yet have symptoms in the bladder/urethra?

I'm very confused, as you can probably tell! Sorry again for writing an essay.....

[Maryjane]

Hi 😊 I have skim read as I am busy so will read properly later.

I have been under said Prof in London myself , basically we need oestrogen regardless of it's an embedded UTI or not , I have been on a voyage with my VA , journey is far to short.

Where I am now ,the estring local permanent oestrogen sits in vagina for 90 days at a time , vagifem irritates , full HRT oestrogel and utrogestin, and under going somenthing called The Mona Lisa Touch look it up , 3 Rd treatment due in two weeks , and without saying to much I have a slight smile.

I have been in the VA treadmill for nearly 5 long years I'm now 50.

[Laylabud]

Thank you for posting this.  I am interested in this as I am having discomfort in the pelvis area which I am worried about. I have a go appointment next week. The discomfort is intermittent some days worse than others it tends to be in my lower back and hips  as well. The pain can change from feeling bruised or a dull ache or something is pressing in that area, are these the type of pains you get too? I went to the doctors over 2 weeks ago he gave me antibiotics for a uti which has come back negative.
My history is that I have had 3 ultrasounds since last summer and was told I had fibroid and cysts on one of my ovaries. I am now in menopause but had an abnormal bleed then referred to see a gyno who then put a camera up and found I had a benign poylp which has now been removed 7 weeks ago. I  also have an enlarged uterus measuring 104x61mm and a 10mm thick wall lining but have no follow up or meds to help me through.
Any advice or other people having the same symptoms would be appreciated.

[Eviepf]

Hi Maryjane. I'm glad the Estring is working for you -I was very keen on the idea of it but it just didn't suit me at all. I think you're right about estrogen being needed post-meno whatever happens - I've just been hoping that hormones might be a total solution for me as the antibiotics don't seem to have helped me that much (although I know it's often a long haul). My problems started when I was presumably perimenopausal, but also following what seemed like a straightforward UTI, so I agree it's quite possible that for me there's more than one cause. I've read about the Mona Lisa Touch with interest but thought it was mainly for vaginal dryness/soreness, which I don't feel I've ever really had. Can it help with bladder issues too?

Laylabud - sorry to hear about your pelvic discomfort. One thing I only found out about after I'd had my hysterectomy is that fibroids, if large, can cause similar to what you describe. My fibroid/uterus was huge and looking back I'd definitely had intermittent aching in my lower back, hips and tops of my legs which I hadn't connected to the fibroid and which disappeared when I had my hysterectomy. I wonder if this could be contributing to your symptoms?  I'm not advocating that you have a hysterectomy (far from it) but if you knew that the fibroid might be the cause of the discomfort, it might make it less worrying? I'd definitely ask your GP or gynae about it.  Also, in case the pains could still be due to an UTI - did your GP send a urine specimen off for testing after your antibiotics as you're still having symptoms? If he only did a dip test, there could still be infection there as dipsticks are now known not to be very reliable and to miss a lot of positive urine samples.

[Laylabud]

Thanks for you advice. The urine sample was sent off to the lab and it came back satisfactory.  With regards to the fibroid I was told it was small when I had the poylp removed god only why they didn't remove that as well. I am not keen on having a hysto as I worry about the G.A when having a major op but I guess I will have to consider this if I need to.
I hope you manage to sort out your problems.
I was so looking forward to the part of my life when I no longer had periods but this menopause is no walk in the park and it should be given what us ladies have to put up with during our child bearing years.
I didn't have children but things I have read is that you are more at risk of certain things if you don't. Life at times just isn't fair. 

[Laylabud]

Hi Sparkle

Thanks for the info. No they haven't told me where the fibroid is, did you get back and hip pain?

[Hurdity]

Hi Eviepf

 


I can't really answer re bladder issues vs vaginal issues and having the former and not the latter? I always presume the two would go hand in hand.

However - you are not too old to start HRT at 60 - you are still on the cusp as you are only just over 60 and within 10 years of menopause. The current recommendations are that if women do start at your age then a transdermal approach would be recommended, produced you have no other risk factors eg re blood pressure, body weight, heart problems etc. In your case as you have no uterus you do not need a progestogen which is usually the cause of problems with HRT.

I would ask to be referred to a menopause specialist and see if you could start a low dose patch such as Estradot 25 mcg ( although there are supply problems at the moment) and take it from there. There is of course estriol cream for the vaginal/bladder problems - the Ovestin is the more concentrated so you have to use less to get the same effect - have you tried this?

I don't know what else to suggest - but you do certainly have  a few more options.

Hurdity x

[linfit]

Hello all. This is my first post but I've been browsing the threads on here about VA and topical estrogen. A bit of history (sorry it's long). Since 2011 I've been suffering with bladder/urethral issues, at first 'only' intense urethral stinging/burning, which came and went, but often lasted for weeks at a time, with varying degrees of severity.  I was 54 at the time and still having regular periods, which had been horribly heavy for a few years and were getting worse.

I had a hysterectomy in late 2011 (kept my ovaries) due to massive fibroids and the awful periods. Urethral issues continued and I was prescribed Vagifem - I gave up on this as I wasn't sure whether it was helping - the symptoms had always been intermittent anyway, and I really couldn't tell. This was around the time when the Vagifem dosage went down, which was the final straw for me - the GP didn't want me to use it any more than twice per week and when I saw the dosage reduction I just thought 'what's the point' - if 25 mcg x 2 isn't working, 10 mcg x 2 definitely won't. There was never any real info from GP about how VA might affect the bladder. I hadn't (and never have) been aware of painful vaginal dryness, so thought how could I have this thing called VA?

Symptoms continued intermittently, but got worse around 18 months ago - urethral stinging/burning pretty much all the time, and I had started to have a very heavy watery discharge.  Had previously seen urologists, who were not very helpful, to say the least and diagnosed Painful Bladder Syndrome (aka IC). In late 2015 had a cystoscopy, which showed no issues inside the bladder (no surprise really, as all my symptoms were then urethral). Since then, have tried long-term high-dose antibiotics with a dr in London who believes that imbedded infection is to blame in these cases, but am not really sure if this has had any beneficial effect.

Online, a few months ago, I stumbled on this forum and started reading other info about the menopause/VA and this got me wondering if this might after all be my problem, as I read about the effects of low estrogen on bladder/urethral tissue, not only on the vagina, and also saw accounts from women who seemed to be having exactly the same symptoms as me.  By this time, I was also having occasional urinary frequency and the 'urge-to-pee', which I hadn't had before.  In March this year, I saw a gynae privately, who is very clued up on menopause and HRT. She told me that I should probably have been put on HRT as soon as my symptoms began, and definitely after my hysterectomy. This was not suggested by my doctors at the time..... As I'm now 60, and really too old for full HRT, she recommended an Estring PLUS Vagifem, and said to use both to start with, to try to kickstart things. I had issues with the Estring (using it resulted in an acute UTI) and had to discontinue it after 1 week, but have now been using Vagifem 7 days per week (on gynae's recommendation) since mid-March - around 8 weeks.

I still can't tell if the Vagifem is helping and my question is, can it really take over two months to feel a benefit? Also, can one have no massive vaginal dryness symptoms and yet have symptoms in the bladder/urethra?

I'm very confused, as you can probably tell! Sorry again for writing an essay.....

Hi there,
I started with symptoms of VA last August; stinging, burning an urge to pee. I was given Vagifem twice a week but in January I saw a menopause specialist who said to increase to five times a week and it wasn't until March/April time that I started to see an improvement. I was fine for a few months, am having a bit of a flare up again but the specialist I saw said it can take months and that twice a week isn't sufficient at forst. I think Vagifem has helped me. I didn'r notice I had vaginal dryness at first but I think it was something that was there for a time before I got VA symptoms. I hope this helps. I am not on systemic HRT but do think local treatment helps. I am also using Ovestin on the outside of the vagina to help with stinging and I think that helps too.

[Eviepf]

Hurdity - thank you for your advice re HRT. I'm seeing the gynae again next week so will definitely talk to her in depth about that.

Linfit - thank you - this is very helpful. I'm sorry to hear you're having a flare up and hope it settles down. It's good to hear from someone for whom the Vagifem took quite a while to help and also about Ovestin (also mentioned by Hurdity). It's interesting (and quite reassuring) to hear that vaginal dryness wasn't what you noticed to start with.

I've been thinking back and remember that, maybe up to a year before the bladder/urethral symptoms started, I stopped being able to use tampons. I just couldn't tolerate them due to unbearable discomfort. Putting two and two together, I think this must have been due to dryness issues - I can't see what else it could have been. I've also been thinking about the timeline for my symptoms, especially the increased frequency and urge-to-pee which began last Autumn-ish, on top of the original stinging/burning. I've been mystified by that and wondered if it was somehow down to the long-term antibiotics which I was (and still am taking). I was then nearly 60 and I am now wondering if the increased symptoms were due to hormonal changes. Seems quite likely and something else for me to discuss with the gynae next week.

It's hard to know when you actually hit menopause when you've had a hysterectomy and so are not having periods!

[Reader2]

Hi Newbie, I'm a newbie too.  I've joined because when I was at my worst the Menopause Matters Forum ideas gave me hope and positive steps to try - so I thought it only fair to share my story - maybe it will help someone.  It has taken 5 months for me to start feeling human again.  I am 51 and was sailing through the Menopause or so I thought until mid February.  Weirdly no hot flushes yet except overheating at night.  To teach me for being smug 5 months ago I had what can only be described as an "attack" of pain in my perineum and even in the vagina.  I suspected an infection but the feelings were so weird I booked a health scan with Nuffield.  I was checked over in early April.  All was OK apart from weight, I need to lose a few stone, and blood in my urine.  To be honest I wish I hadn't followed up the blood in urine.  The Doc prescribed me antiobiotics based on the blood and the full bladder feeling I was having, ignoring that there was no burning with the urine, he decided it was a UTI.  The antibiotics did nothing, nor did the second lot I was prescribed for a cultured urine test.  However, I now know that it is unlikely the urine test was "clean" as not catheterised and my urologist who has found no infection in recent weeks suspects there never was an infection and it is all to do with atrophy causing blood in the urine.  In the meantime, before finding a urologist, I spent 2 months and countless, time, money and effort in trying to rid myself what I viewed as a resistant UTI.  I finally found the urologist as mentioned before, and she is fairly certain this is all menopause created and atrophy which affects both bladder, urethra and vagina.  The pain I felt at the onset of the drama is mostly gone although I will have some discomfort every day it is nothing in comparison to the feeling I had been on a 100 mile bike ride at the start of this nightmare.  My bladder issues are decreasing too although I have to be careful what I eat and drink (have now lost over a stone in weight).  I am using Castor Oil (vagifem stung), as I have heard it plumps up the skin tissue and has healing properties.  I have switched to all natural toilet paper and water wet wipes (99% pure water).  I take oregano oil in capsule form, vitamin D, and live biotics (the ones you keep in the fridge).  I did one other thing that I read reboots your body - a 2 to 3 day waterfast.  This wasn't easy and you have to speak to your doctor before doing it, who might be cynical unless you show the online studies.  The fasting but drinking plenty of water helped me I have no doubt, but as I say speak to a Doctor first.  Now, life is OK again, there are niggles and I am still having a couple of tests with the urologist who has become far too focussed on a cyst she found on my ovary (probably been there decades as it is a small dermoid cyst) and now seems to have forgotten all about the bladder issues in the meantime!  My urologist is OK, my doctor is OK, but what we really need are more specific, knowledgeable professionals specialising in menopause.  I think all my money and time in the last five months could have been saved by seeing someone who really knew all aspects of menopause in the first place .

[CLKD]

   Reader2

Vaginal Atrophy mimics urine infection-type symptoms which is why a urine sample MUST be sent to a Lab. to see if any bugs grow and if so, appropriate ABs prescribed.  For me VA felt like razor blades up there  plus a heavy belly and irritated bladder 

Hopefully you will continue to keep the symptoms under control.

[Hurdity]

Hi Reader2

  from me too.

So sorry to hear about your bladder and vaginal problems. Are you still having periods and how often are they if so?

I'm glad you are able to feel a bit more comfortable with the products you are using but you do really need to get to the position where you can use vaginal oestrogen (like vagifem or estriol cream) without discomfort. This condition will not go away and will continue to be present and worsen as you age and your own oestrogen decreases.

Please look at all posts and threads by Maryjane. She has suffered terribly with similar symptoms and is on a mission to spread the word about VA so that it gets talked about and recognised rather than what happened to you - being repeatedly treated for urine infections.

I am not expert in all of this because I use systemic (full) HRT together with vaginal oestrogen and have no problems down there so only use and know about the basics. However there are so many women here who have a lot of experience and knowledge of this specialised area - but particularly Maryjane - also Dancinggirl (see her thread in Private Lives called the Burning Club) - and what I suggest is you start a new thread perhaps in All Things Menopause section and then you will get answers from the forum experts on this.

Hurdity x