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[cjmca]

Sorry I'm starting a new thread, can't find my old one - posting on a phone! 

So I posted a little while ago that my bladder pain and pressure/urinary urgency/VA/itching like crazy symptoms all came back quite quickly. Very upset about this as took 5 months of a lot of pain to figure this out, and I had got myself 80% better and was just getting my life back.

The problem is I'm not entirely sure what got me better to begin with. My symptoms developed over time and right before they started to improve, I had: Urinary urgency, pressure feeling over bladder, tight stomach muscles, sore belly button, itching down there (vagina, perinium, anal area, labia), "urethritis" which I now believe to be atrophic, pain at entrance to vagina and around urethra, a painful "spasm"(?) as I was finishing urination, couldn't wear clothing that was remotely tight, and the worst pain when lying on my side -couldn't stand it for longer than a second or two, like my bladder was about to explode!

Treatment I took:
-Was on Estradot 37.5 and utrogestan 100 daily for about a 5 weeks before taking:
-Vagifem. After 5 days of using this, the horrid pain I had when lying on my side disappeared. Amazing. Kept taking this daily for 28 days. Was also using Ovestin cream externally, and sometimes a dose internally with the Vagifem
- Around this time my GP also put me on Vesicare/Vesitirim for overactive bladder
-Pudendal nerve test & block. Day 6 of my first round of Vagifem, I had a pudendal nerve test which came back positive, and straight away a block.
-After the initial pressure-when-lying-on-side symptom relief from Vagifem, I didn't notice any huge symptom relief for 2-3 weeks. I think during this time I upped the Estradot to 50.
- Then I realised I could wear my jeans again with very little discomfort. Itching had mostly gone, wasn't getting the spasmy thing when finishing urinating, and peeing felt normal again. I was still aware of my bladder, but felt 80% better. My libido also really kicked in, never felt like that before - sorry if unladylike but things were much more lubricated down there. I upped the Estradot to 75.

Then in reasonably quick succession (within 1-2 weeks)
- I accidentally missed 2 utrogestan tablets, and had a bleed quite soon after
- Estradot patch reduced back to 50 having been on 75 for 1-2 weeks, due to dry eye symptom
- My day 28 of daily Vagifem was up so I started tapering to twice a week. Had around 3 days of no Vagifem or Ovestin and (coincidentally?) then my symptoms returned

Now I have the bladder pressure, inability to wear tight clothing, vaginal ache, itchiness like crazy, dry and little cuts at entrance to vagina (maybe from the scratching), and that horrid pressure when lying on my back, not on my side (though not as bad as first time around). My libido has fallen off the face of the planet.

I'm still unsure as to how I got back to square one - either reducing topical estrogen, reducing HRT patch, missing the 2 utrogestan and having a bleed or the pudendal nerve block wearing off. Or a bit of all of the above. I have a feeling, although it's not well researched or documented, that urogenital atrophy can irritate the pudendal nerve. I'm only hazarding a laypersons guess here, but atrophy must annoy the heck out of nerves. We never really knew what caused my positive pudendal nerve test, this is my own theory!  Although my ladies physio said just because there's a positive PN test, doesn't mean you have a PN problem.

I've had Premature Ovarian Failure since my early 20s, now 34. Despite this my body was coping, but when my symptoms started in June I think my body gave up. I had no idea that adrenal glands are involved in some estrogen production, as are fat cells in the belly. I had 1 kilo of fat taken from my belly via tummy tuck in January. Then I was training for marathon and building muscle = collagen use = estrogen use in building collagen. Total recipe for disaster.
 
So since my relapse two weeks ago, the vaginal ache and a little bit of the pressure when lying and sitting had gone. But then I have a feeling it was literally the jiggling around of my bladder yesterday from taking the stairs and running with a wheelchair with my grandad in (long story - trip to ER for him, he's fine!) that caused the extra pain today. Last time this pain occurred was day after appointment with my previous gynae 2 weeks ago re:relapse, which required long car journey, sitting on hard chairs and walking around Dublin and the maze of a maternity hospital - such a thrilling place to be   Last two weeks I hadn't done anything other than a little walking, nothing jarring.

So now, I'm covering all my bases. Upped the estrogen patch to the max dose of 100, using Vagifem every day, using Ovestin externally twice a day, changed utrogestan from every day to 2weeks/3 months at a higher dose, and I've booked in another pudendal nerve block for week after next.  I've also started back on Vesitirim (think this is Vesicare in the US) as I stopped taking this when I was at 80%, thinking the estrogen was kicked in and I was good to go. Maybe so, or maybe not, I just don't know!

I was meant to be going back to work in January. I made the decision today to postpone this to the max time allowable - I'm legally allowed a year off due to illness before losing my job. So I rang them today and said I need the full year off. I really feel I need to be 100%, not even 80%, before I can go back. I was feeling the pressure to get better in 4 weeks and the stress wasn't helping my mood.

My bladder pressure is so uncomfy right now, and the Estradot 100 is making me cry at the drop of a hat. I cried looking at a plant today. A plant set me off! What the hell?! I'm so itchy, dry, irritated, un-libidoed, pissed off and FED UP. 

I just want my life back. Why do our bodies betray us   I'm not even sure why I'm posting this. Comments, thoughts at this messy predicament I guess.

[donnacrichton]

Can't just scroll passed this hopefully someone with better knowledge will jump in soon. I have had various very strange symptoms including severe arousal during low estrogen phases that nobody can explain. I also had 1 year off work but my biggest issues is keeping at on dose my own worst enemy. But high estrogen definitely feels awful got this from 75mcg x

[Dorothy]

So sorry to hear things have got really bad for you again.  I started menopause at 35 - can't imagine how grim it must be to have had to start dealing with it in your 20s.  Sending you huge hugs. xxx

Hopefully, some of the more expert ladies will be along soon to give advice, but my twopennyworth, which may or may not be helpful - I usually find I feel better in the vaginal area while I am having a bleed, but I do find that my bladder can need emptying more frequently at the same time - so better for the vagina, worse for the bladder.

I'm on the birth control pill, not HRT, but I only have to miss 1 pill for my symptoms to kick back in again, so missing/reducing doses can affect you rapidly.  So having 3 changes to the hormone levels going into your body in fairly rapid succession could well cause problems - can you go back to how things were and try making the changes more gradually?

Also, it might be worth looking at your diet to see if there is any link, particularly to the bladder issues - I've recently worked out that an increase in caffeine or sugar can give me a lot of bladder/urination discomfort.  Hope you find a solution soon 
 

[cjmca]

Haha! I think I needed a post binge, which I clearly managed, sorry for the lonnnnng post. Am used to posting on a phone since being stuck in my parents house in the arse end of nowhere with no internet (unless you include a ratty old dongle!). No Netflix is just wrong 

I absolutely do think the changes in dosages had a some/a lot/all to do with it. I wanted to be on the max dosage of HRT from day one to be honest, just given the severity of symptoms and my long term lack of estrogen. 

I'm very lucky in that last week I found a gynae in Dublin who is in regular contact with Nick Panay in London, who I happen to have an appt with in Feb. And she basically agreed with me and said I should have been on the highest dose since day 1.

Previous gynae wanted the slow and steady approach. But when you're dealing with POF the general consensus is it demands the highest dose possible as quick as possible. I also didn't like taking the utrogestan daily. I did want to not bleed, but I ended up bleeding anyway - had a second bleed when I went back on it after missing the 2 tablets. So my new gynae has me on the max Estradot patch, and to avoid regular bleeding but enough to keep uterus happy, stopping daily utrogestan and replacing with higher dose but for 2 weeks every 3 months only.

My systemic estrogen was non existent prior to any HRT. So it's still low, and local estrogen might have been doing the job but I think I tapered too early, again on advice of my gynae at the time. So hence bumping up both the topical and the patch now.

But even tho I've bumped up the estrogen, my bladder still isn't happy. I suppose I've not given it nearly long enough, but I'm stressing out over this and not being able to get back to how great I was only a few weeks ago. So disheartening!  And I've no internet to watch Poldark 

[CLKD]

Are you using locally applied oestrogen replacement into the vagina i.e. Vagifem or Ovestin1mg? 'cos short term there ain't much else that will ease those symptoms: for me it was the need to pee constantly, a feeling of a full belly below the button as well as razor blades up there  ……… I also use Savlon or KY Jelly to keep the outer lips moist otherwise they get dry and itchy …….. bugga 

[cjmca]

Yup, back to Vagifem daily and Ovestin cream externally twice a day. No breaks for me on the topical estrogen any more!  How does the effing bladder pain come back with a vengeance?! And when will it bog right off again 

[cjmca]

It's a tough one, because I've had Ovarian Failure since my early 20s, and no estrogen supplement since then, until 3 months ago that is.  The lack of estrogen for 14 yrs has really affected me in ways I didn't realise - "blocked" ear for years, heart palpitations, abnormal breast tissue for my age, awful memory and concentration, constant fatigue, osteoporosis in spine & hips, VA, multiple UTIs, and now the bladder irritability.

So it seems like my body is desperate for estrogen and the POF specialist is saying you need the max systemic dose and you need it now, nevermind just for the bladder probs. But personally I think the topical estrogen has the better effect for the bladder, but can't forget the rest of the probs either. Such a mess! And to think I was trying to train for a marathon with this body 

[cjmca]

Ha that's a good question! My ovaries shrivelled up, can't be seen on an internal ultrasound. But I had a laparoscopy a few weeks ago and there's ovarian tissue present.  No cause for the premature ovarian failure found, had every test under the sun.

I was prescribed many different brands of the pill during my 20s, all had the same response - bad depression and felt suicidal. I tried explaining this to various consultants but insisting I kept taking it - basically brushed me off. No other option offered. So I was too scared to take it. Tried to commit suicide 3 times in my 20s. But this is Ireland, back then mental health was a "put up and shut up" thing. Still is to some extent now.

I did start off on the 37.5 Estradot for a couple of weeks, then up to the 50 for a few weeks, then the 75. But due to dry eye my gynae at the time put me back on to the 50, which I wasn't happy about. Whatever it is about the etiology of POF, the protocol seems to be to go straight to the max dose, for example ladies who've had a long term eating disorder and no periods for ages tend to be put on the max dose, so I've been told. So I did have some introductory doses, but now it's full steam ahead!

Uhhhh I put Ovestin cream on externally about 2 hrs ago, was very thorough with the coverage as I was clearly missing bits, woke up feeling desperate for a wee and my tummy muscles v tight, and sore sore bladder, think it's spasming like crazy. Is that a good thing or a bad thing?! Ow 

[CLKD]

Did the spasm pass?

[Annie0710]

Have you been offered testosterone too ?

Given your age and shrivelled ovaries I'm sure you'd be a candidate, it's given me lubrication down there but I also use vagifem, you can double your dose on that to 4 pessaries a week(maybe more in your case but speak to gynae first)

My ovaries failed after my hysterectomy when I was 32.  I think they kind of worked every few months or more spaced apart but my GP started me on low dose but my sweats were returning so upped to max

A scan in sept showed my ovaries had disappeared! I'd never heard of it but she said the blood supply would've been damaged during the hysterectomy and they had struggled on before shrivelling and disintegrating and that got my testosterone prescribed

But I'm having further issues down there, it's itchy, it's sore so I will see if I can add an oestrogen cream into my regime too

Oh yes I developed night dry eye too and testosterone has helped the late evening episodes but not fixed the through the night dryness yet


X

[cjmca]

CLKD - nope, still spasming! Woke up with a very strong urge to pee, thought I needed to pee like a racehorse but not a huge amount came out.  I'm guessing initially when the cream hits the bladder that it can make it spasm? Perhaps given my bladder walls are irritated due to lack of estrogen at the mo. Just guessing at this rate!

Testosterone to be reviewed in 3 months after hormonal levels checked, need estrogen levels to be good before I can take testosterone. With POF I need to take Vagifem daily for 3 months, then 5x week thereafter.

It's very interesting what you say about your dry eye symptoms. Typically estrogen is moisturising, so you wouldn't expect to get dry eye from it, but I have. A Dr at Harvard in the US has done a lot of research on dry eye in meno ladies - google David Sullivan dry eye.  He found that in meno, the eyes change from liking estrogen to liking androgens. He created a testosterone eye drop that has had huge success in treating dry eye.  Allergan were actually developing the drop for commercial use but stopped only because they were making huge money from another drop and didn't think it worth their while to continue. In the words of CLKD - bugga!!!  I've known ladies to put a tiny amount of testosterone gel on the eyelid and that's taken care of the dry eye. Not recommending it tho!!

[Annie0710]

Wow I've read on here before about testosterone on the eye (might've been you) I won't try it but interesting

I developed double vision 2 years ago (very problematic presently) and the nocturnal dry eye started about 5 months later so I assumed they were connected, it appears they're probably not

I'm going to trial upping my vagifem then.  It's cured my UTIs but 4 a week isn't helping this soreness.  I might do a reload first and then see how I feel after the 2 weeks

Hope you get sorted, you're too young to be suffering like this

X

[cjmca]

Feels like someone putting pressure on my bladder, like my bladder is full but it ain't. When I'm walking now after applying the Ovestin I'm getting sudden urges to pee, think urethra is atrophied and probably annoyed at the Ovestin intrusion 

V glad to have some experts like CLKD here, but sorry they have to be experts to begin with, this is misery 

No synthetic hormones combined in one pill if I can help it, just given the probs I had before.  The Estradot patch seems to be agreeing with me, fingers crossed

[CLKD]

  - not an expert as I have a good GP who diagnosed atrophy B4 I realised!

[CLKD]