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Author Topic: Bladder issues... again!  (Read 3368 times)

thekitchensink_

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Re: Bladder issues... again!
« Reply #15 on: May 25, 2023, 11:29:56 AM »

Welcome back. I really am sorry to hear all you have been through. Many women stop VA treatment as they feel better so think they no longer need it. You are not stupid and you were not to know VA would flare back. I too always feel like I need to go to the loo right after inserting the applicator. Perhaps you could try and not insert it so far? Maybe that will help a little. I usually just distract myself for 30 minutes and then go to the loo.

I would start from scratch with this. Use Vagifem and Ovestin every single day. Stop having baths and switch to showers to avoid the are in prolonged contact of water. I apply emollient to the vulva, wash it off in the shower and then reapply some to act as a barrier. I actually wash my whole body in emollient now. I like Aproderm but you can use any you find suits you.

VA is awful but I find it very positive that it got better for you before. I would find that reassuring and once you start treating it like you did the symptoms should reduce again.

How awful nobody listened to you when you told them you were suicidal. It is disgusting you were dismissed like that. I wonder if the progesterone is something you struggle with too. To just keep giving you a different pill was so irresponsible. I am thankful you are still here with us.

Many members here use VA treatment daily. I wish they did not suggest the loading dose was decreased to twice a week as this is not enough for many of us. I use Ovestin every day and have done for two years now.

Thanks very much for the advice - I have literally gone straight back into bladder management mode.. no more baths, showers only & only using Elave products to avoid any going near my bits!  Would need a fire extinguisher to put out the burning otherwise!!  I have started to use Silcocks Base again, which is fab for washing and moisturising - it's an emollient. 

I am still, at the age of 40 and only last week, being ignored when I mention mental health effects of hormone therapy to my current GP.  It's history just repeating over and over - I feel like an utter broken record.  I am attempting to get the PMDD officially diagnosed, so at least he doesn't think I'm making it up  >:(

The number of conditions I've had that have gone undiagnosed is insane, and frankly I'm so effing fed up with the lack of medical care.  I had undiagnosed hydrocephalus, was told it was "just anxiety".  I needed brain surgery  :o  I became infertile, developed "interstitial cystitis".  I had undiagnosed PMDD.  I didn't know that I had either ADHD, nor Autism Spectrum Disorder - it's affected all areas of my life - work, education, relationships.  92% of women with Autism Spectrum Disorder have PMDD.... Because the ASD and ADHD went undiagnosed, I developed Visual Snow Syndrome (basically the filter in my brain that deals with sound and light etc. is broken - I have chronic tinnitus, light sensitivity, dizziness, visual snow/static - my brain has been stuck in fight or flight because I've been masking with autism for my entire life). 

I'm really tired of doctors.  I'm tired of having to fight them for what I need, I'm tired of not being believed, I'm tired of being told there's nothing wrong with me.  I'm not a sodding drug seeker, I'm someone with ASD, ADHD, PMDD, Visual Snow Syndrome, and lets bung in Pelvic Floor Dysfunction and Interstitial Cystitis again now.  The treatment for acute PMDD includes a benzodiazipine, women are often given 3-4 Xanax per month for it.  The treatment for vestibular migraine (very similar to Visual Snow Syndrome) is a course of low-dose benzodiazipines as per the Timothy Hain protocol.  The treatment for Pelvic Floor Dysfunction can also include benzodiazipines, I was previously prescribed them exactly for this purpose.  Because I've previously been prescribed benzos for these conditions, my GP now thinks that every single time I see him, I'm just there to ask for a benzo.  I went to my GP just last week right in the middle of a PMDD episode, and all I got was a lecture on how benzos destroy people.  Yes, I know this, and I wasn't asking for more than a few, nor asking for anything that wasn't a valid, documented treatment for the condition I'm experiencing.  And lord I was so close to jumping off the local pier into the sea during the last episode - my GP isn't going to give a shit about benzo addiction if I'm no longer here...!   Ironically I left the appointment with a script for opioid painkillers...  ::)

I feel utterly infuriated that I still have to deal with this BS.  And now don't have any medical support. 

Phew, another rant over - sorry!  I just feel so unsupported and unheard.  This is all hard enough as it is  :-\


I'm just starting on this journey as well, I began chemical menopause in March for my PMDD, after years of asking GPs for help. Then finally paying for private doctors just to get diagnosis to be taken seriously by GPs, and get the treatments I need.

I don't know if that's an option for you and I know it isn't for so many, but Dr. Michael Craig is a specialist psych/gynae in PMDD treatment, and working with him I was able to get private prescription for 10x alprazolam per month, which as you said - is absolutely an approved treatment for PMDD. I cannot take SSRIs, BC, or Gabapentin without extreme side effects, so they are the only option for me when things get bad. (I also have AuDHD/PMDD).

On thing I wanted to ask about is if any of the doctors have suggested non-progesterone based HRT for you? I'm trying to figure this out for myself. I'm so sorry you're going through similar experiences.
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Madge79

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Re: Bladder issues... again!
« Reply #16 on: May 28, 2023, 07:21:33 AM »

Hi cmjca - I know this an old post but did you get anywhere with the visual snow? I was another POI patient in my mid thirties: now post meno and 44. I’ve recently started having chronic migraines - I think I’ve actually been having them fairly regularly for a year but didn’t really know. I’ve been stuck in a constant migraine state for over 3 months now after messing around with my estrogel dose a bit too much! I’ve had a migraine all day, every day for over 3 months. I’ve also got visual snow that started around the same time as the mega migraine.

Now here is the interesting bit, I have recently been formally diagnosed with ASC. So 44 years of masking and basically menopause broke me. It broke my ability to mask and basically unmasked my autism!

I had no idea visual snow was linked to ASC! So firstly thanks for making me aware of this and I can now unleash my hyper focus to try and figure out how to work on it!

I now really I’ve actually had weird visual snow/phosphenes my whole life. As a child I would describe lava lamp colours when closing my eyes and other stuff which in now think was the AS/VSS all along.

Anyway just wanted to say hi and that you aren’t alone! ❤️
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Strugglinglady

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Re: Bladder issues... again!
« Reply #17 on: January 08, 2024, 01:36:36 AM »

I am also looking for advice and I’m not sure where to post on this forum I find it confusing. So I hope this is okay. I am having bladder issues again but they were fine for awhile and I stopped using the vagifem. because I was a bit worried about Using it for so long I’m 68 now. Can you please advise me How long it took you once you started using it to get these bladder issues under control and can you remind me of the loading dose.? Hoping it works quick because I’m really miserable and I am having repeated urinary tract infection’s. Thank you in advance. This is a great form but I just struggle to use it because I can never find the new topic button. I’m sure it’s easy it’s just me😂
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Joaniepat

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Re: Bladder issues... again!
« Reply #18 on: January 08, 2024, 07:15:40 AM »

The loading dose is 2-3 weeks, then you can try reducing to a dose that keeps you comfortable, but reduce slowly at first.
Some of us here need to use it daily. (I am 74 and use 5 a week, can't manage on less.) It can take quite a while to work if you are starting over again. Sorry, I know that's not what you wanted to hear. Good luck.
JP x
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Ayesha

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Re: Bladder issues... again!
« Reply #19 on: January 08, 2024, 10:22:22 AM »

One of the things you can't do when suffering from Vaginal Atrophy is to stop treatment, the symptoms will come back.
Its for life and its very safe so don't worry about using it, every day if you have to then when you feel better you can reduce the dose yourself.

I am managing on 6 days a week after two years of Vagifem and Ovestin, it took a year for the treatment to work and for me to feel normal again.



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