CLKD - I remember you from way back when, replying with reassuring responses to my panicked posts - thanks v much for the support. I knew in the back of my mind that VA treatment was for life, and that systemic HRT often didn't reach the bladder, but for some reason I thought I was covered. Dunno why on earth I thought that, or would risk these symptoms returning. But not going to beat myself up over it, what's done is done, and I won't be making the same mistake again!
I'm finding it really hard now to get a doctor or consultant to prescribe the level of vagifem & ovestin I need. I don't know how else to explain to them that in order for this to go into remission the first time around, I had to use it daily for months at a time. I'm based in Ireland, and at the point now where my 67 yr old Mum is going to drive over the border to the UK to get it over the counter there (can't get it over the counter here). She knows how much of the stuff I went through back in 2017, she was forever going to the chemist to collect my scripts! But this time around it's proving difficult to get my doc here to take this on board, she just doesn't want to prescribe it and says that by now I shouldn't still be having symptoms. I've only been using it daily for 3 weeks, and in those 3 weeks have done a round of progesterone, which utterly negates any benefit of topical estrogen - I get awful urinary urgency on progesterone. Unfortunately the doctor I saw initially with all of this in 2017, who actually suggested I use vagifem daily for months plus ovestin, is based in the UK and there's now a significant wait list to see him.
Progesterone is also definitely the issue for me when it comes to PMDD. I was hoping bioidentical progesterone would be kinder to me - it hasn't been. However I can now just about manage 7 days of 100mg of Utrogestan, if I take supplements that support potential GABA receptor problems - high dose magnesium, B6, an antihistamine. However if I take progesterone for longer than 7 days and/or at 200mg - utter raging PMDD. I had a horrendous episode of it a week ago, am still sat here covered in bruises all over my legs from hitting myself, and my right hand is green from a huge bruise that appeared after I punched the heck out of a concrete wall. Almost broke my hand. I went to my GP that morning and he clearly thought I was making it all up, and drug-seeking (at that point I just badly needed a Xan.. to just switch off my brain!) - after me talking about PMDD for 10 minutes, he then says "what is PMDD?". I am not embarrassed to say it here - I went home in an utter state and was completely suicidal, had gone to my GP for support, and got the opposite. I don't even feel I can go to my GP for anything now, as he just thinks I'm after benzos - instead of offering support with either my bladder or PMDD, he lectured me on the dangers of benzos. I can't talk to my meno consultant about PMDD either, because even after reporting the last episode to her, she replied and said to take 200mg progesterone for 2 weeks every 3 months. Umm... I'd be dead if I attempted that!
With progesterone I'm a little stuck, if I take it orally I'm more likely to get PMDD, but using it vaginally absolutely murders my bladder. Not only was I having a huge PMDD episode last week, I was also walking around with a urethra that was so irritated I'd just pee myself walking across a room. Literally the day after stopping progesterone, my mood will be fantastic, and my bladder far more manageable.
I feel like I'm failing to get the seriousness of PMDD, the pain of my bladder on progesterone, and my need for more than the usual dose of topical estrogen (and for longer periods of time) - I'm failing to get any of this across to my doctor, and am frankly at a loss. I would have got a hysterectomy, but I'm afraid of what it would do to my bladder, and I have medical PTSD from one botched brain surgery, and I was assaulted by a consultant (during a cystoscopy ironically, I told him to stop what he was doing due to the pain, he said no and just kept going - then laughed at me afterwards saying "nobody has ever reacted like that before" - I was shouting in pain).
I think that all I can do is:
- Use a vagifem in the AM and PM every 2 days
- Every other day in between Vagifem, use Ovestin?
- After 3 months of this dosage, switch to maintenance of vagifem 5x a week (2x is nowhere near enough for me!)
- I already sent a urine sample and vaginal swab to MicroGenDX in the US, as culture & dipstick miss more than half of infections - but it came up negative. My meno consultant is asking that I send samples for broth culture, so will do that to be sure there's no lingering infection.
- RE: PMDD, insist until I'm blue in the face that I can only do 7 days of utrogestan 100mg, no more... but God, I'm so exasperated that the severity of this for me, and how dangerous PMDD is, is being completely ignored
Am I not explaining it well enough? I don't know how else to say that my mental health turns to utter shit. I can't believe I'm still having the same problems getting this across to medical professionals at the age of 40, that I first reported when I was 20. I need to get a few benzos prescribed, in case of an episode. My GP would stop caring about me getting addicted to benzos if I was dead!! And I only asked for 2-3, and specifically said that I didn't want to take more than that... ugh. I just... ugh.
Sorry my reply is so long. I think I needed to get this all off my chest