Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[cjmca]

Hi all

Just wondering if anyone else here with IC, or bladder issues stemming from low estrogen.

Briefly:
- I've premature ovarian failure since 22, now 35, only put on HRT last year...
- Dull pelvic ache started May 2016.  No HRT, training for a marathon and post-tummy tuck where I had a lot of estrogen-storing belly fat removed....
- By October 2016 I couldn't get out of bed - my bladder felt like it was exploding!
- Nov 2016 saw Nick Panay who mentioned I should get checked out for IC - I queried low estrogen causing bladder symptoms but he wasn't convinced I don't think.  Regardless NP put me on 100 estradot patch immediately, and I think progesterone every month.  Also on double dose vagifem.  Within 5 days of using the double dose vagifem plus estriol cream internally and externally, I could lie on my side again.
- April 2017 - slow and steady improvement in bladder symptoms and went into full remission for about 3 weeks, then something happened.  I wish to heck I'd had my hormone bloods done when I hit remission.  I have no idea what my bloods were at the time - I had bloods done at the end of June and had estradiol level of 93 (patch due a change!) and low progesterone (probably <0.5). Between remission ending in start May and June I had gradual minor return of symptoms, I'd notice a little bladder pressure if I wore something tight.  My bladder also hurt when I tried to run, and it didn't niggle at all during remission. 
- June 2017 - had a cystoscopy.  Biopsy showed mild chronic inflammation - bladder visually was described as moderate trigonitis, moderate/severe inflammation in the trigone and spreading out a bit. 
- Since cystoscopy, gradual worsening of symptoms.  I feel as though the healing I'd done so far with the estrogen was undone in some respects, since cystoscopy involves stretching the bladder further than it does naturally. 
- August - switched from estradot 100 patch to using 2 pumps of estrogel instead, recommended by doc. 

My quandary now is this - I had bloods done again mid-August and my estradiol levels were 770, but I was still having symptoms, and still am now.

To recap a bit, my current symptoms are bladder fullness and irritation to varying degrees, odd bout of urgency, not too much frequency.  I don't urinate at night time any more.  But the bladder pressure/fullness is really bothersome.  I have been lax with the vaginal estrogen recently, I probably on average don't do the 2x maintenance thing a week. 

Blood test results from this week:
* Estradiol 367
* Estrone 597
* Progesterone 0.3
* Testosterone 16 (range given is 8-48).

So my estrone is higher than my estradiol.  And estradiol levels have halved since last blood test (the last blood test with estradiol of 770 I had done in the morning before using the estrogel.  The latest test this week I had done 4 hours after applying the 2 pumps of estrogel).  I'm confused - am I using too much estradiol and it's storing as estrone now?  But my IC symptoms feel worse not better, and with my original root cause as low estrogen, I'm not sure what to make of this.   Also, it seems as though when I use some testosterone, I end up with vast quantities of discharge - Niagara Falls.  It's as though my testosterone is converting to estrogen, which would on face value seem as though my body is stealing the testosterone and converting to estrogen because it's not getting enough.  I had thought the Niagara Falls effect was caused by my intermittent use of Vagifem so I pretty much stopped using it, because of all the.. umm.. moisture up there.  But I wonder is there some atrophy going on as I'm basically rarely using any topical estrogen now - even though my blood levels are sometimes decent (or too high?  I've no clue!!)  I had seen a gynae in the past few months and she did a swab to see if the vaginal cells were estrogenised - she said they were.  I'm still having the same IC symptoms as I did at the time of being told this. 

I have no idea what my bladder-health/maintenance dose of HRT should be now, not a clue. My uro is suggesting we switch estradiol for estriol now and see if that works - but I don't know if estriol is any good for improving osteoporosis, which I have.

Any thoughts or comments would be most welcome!

Thanks
Clare

[Dancinggirl]

I am now 61 and my meno started in my mid 30s so I had POF - I can inderstand your dilemmas.

Though I started HRT aged 37, when I hit 42 I started to get UTI type symptoms etc which I now know were urogenital atrophy. Apparently systemic HRT doesn't always help urogenital atrophy so I should have been prescribed local oestrogen alongside the systemic HRT but none of the various specialists I saw (I kept asking about the burning and discomfort I was getting) suggested local oestrogen !!!
4 years ago, the practise nurse at our local GP practise told me I needed Vagifem local oestrogen!!! At last, someone knew what I needed!!! 

So, here are my thoughts:

Firstly, as you haven't been given appropriate treatment for your POF until recently, it is to be expected that you will have some bladder issues. Urogenital atrophy is very common and will need to be managed long term.
Your hormone levels seem to be fine so I doubt you need to tweak your systemic HRT.
When you say you get a discharge that ‘streams' - what sort of discharge is this? Is it watery, itchy or smelly? It could simply be a bacterial infection - which is also common.
Is the discomfort just in your lower abdominal or are you getting urethral burning and an urge to pee often?
Did the urologist not give some advice about the inflammation that was found at the cystoscopy? Recent research has indicated that constant cystitis type symptoms can be due to deep seated infection that requires long term antibiotics to clear - so ask about this.
It is going to be important you use the Vagifem regularly as symptoms will return if you don't.
I have to follow quite a strict regime to maintain a healthy bladder and prevent the burning urethra.
No tight clothes around my ‘lady bits' - Getting hot around this area will encourage infection and discomfort.
Avoid acidic drinks eg fruit juices, Caffeine ( tea, coffee, cola) and wine.
Drink enough water regularly through the day.
Clean yourself really well after opening your bowels to prevent any bacteria effecting the vagina and urethra.
If the flora balance of the vagina is not right( thrush or bacterial vaginitis symptoms) I then use Multi Gyn Actigel for 2-3 days to treat this.
If you find you have UTI symptoms, do get a urine sample tested at the GP but also drink a half teaspoon of bicarbonate of soda in a glass of water morning and evening for 2-3 days to help reduce symptoms and calm the bladder.
So, stay on your Oestrogel dose, keep using vagifem at least 2-3 times a week. Use the testosterone at a very low dose if you feel you benefit from this and try following my strategies for managing the bladder issues.
Don't over analyse things, you are getting the best advice from Nick Panay, so don't deviate from what he suggests.
If you tweak doses this will give fluctuations. If you are getting lower abdominal pain then this should be investigated.
Hope that helps. DG x