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[cjmca]

Hi all

I last posted here about this I think in 2016/2017, at that time I had developed horrid bladder symptoms.  My health history is a bit non-standard - I went into early menopause in my mid-20's.  Only ever had 4 periods in my whole life, at the time no cause was found.  (In my mid-30s I developed chronic migraine, MRI showed hydrocephalus and I suspect I've had that since birth - the hydro fluid flattened my pituitary gland and I suspect really affected it's function when it comes to periods). 

Unfortunately in my 20's (I'm now 40), I was only offered the pill as a form of hormone replacement.  I was having what I now know to be horrendous episodes of PMDD/Pre-Menstrual Dysphoric Disorder any time I took the pill.  I'm only in the process of being diagnosed with this now.  For me the PMDD episodes were really dangerous, and did result in several suicide attempts over the years.  I'd go from feeling fine, to 30 mins later deeply depressed, with feelings of impending doom, awful anxiety and just feeling that everything was completely hopeless. 

Even tho I reported the mental health side effects of the pill, I'd just be prescribed another brand to try and more often than not, the gynae/doctor would just roll their eyes as if I was being dramatic.  So I made the decision to just quit taking the pill altogether.  I'd post-meno levels of estrogen and progesterone at the age of 26, and the bladder problems started when I was about 33/34.  It took about 3 years to really figure out what was causing the pain (I couldn't lie down on my side as I'd get awful pelvic pain), it was also really painful to lie on my stomach.  I had constant pelvic/bladder pain, would have urgency, frequency... and developed pelvic floor dysfunction too, which just made all these symptoms worse.

I was put on Vagifem, initially doing the 2 week loading and then twice a week - and it did nothing.  Eventually I just realised that this was nowhere near enough, and as soon as I started using 2x Vagifem a day and Ovestin internally and externally also, I clearly remember after 5 days of this I could like down on my side again.  After a few weeks of this regime, I reduced to just using it once a day and did so for 3 months.  I also was put on systemic HRT, but I feel like the topical estrogen really made the difference.

I have no idea why I did this, and I feel so unbelievably stupid for doing so, but I stopped using any topical estrogen (vagifem and ovestin).  I think the main reason why, was once I got onto the 100 estrodot, I'd have a decent amount of.. estrogen-induced discharge, so I didn't think topical was necessary anymore.

Last October, I got a UTI out of nowhere.  It was definitely a UTI, I felt horridly fluey and the dipstick (altho not remotely accurate and often misses infection) did show leukocytes present in urine.  I took antibiotics and started to feel better, but my bladder was being slowwwww to heal fully.

I certainly felt like my bladder was on it's way to being 100% better again, but then... it's gone downhill.  I feel like I've got the same symptoms I had in 2017, altho not as bad - I can lie on my side and on my stomach without much discomfort.  However, I have continual bladder ache, urethral pain, and sometimes really bad urinary urgency.  Pelvic floor dysfunction has also returned, I think because I'm clenching my muscles a lot in response to urgency feelings. 

I recently started back on vagifem, however the 2 weeks loading dose hasn't really done much - but then it didn't do much when I got this back in 2016 either.  I noticed that when I use the vagifem pessary, if it touches tissue in a certain area, I get the urge to pee.  The vaginal tissue that would be near the urethra - if this is touched even lightly, I get the urge to go.  It's so odd!  I also started using ovestin again, and noticed that the outside of the urethra is sore, as are areas just either side of the urethra.  I remember having this particular soreness back in 2017 also.   

I just wondered had anyone else had a recurrence of urinary symptoms - or still had urinary symptoms even tho they're on systemic HRT?  Has anyone required more than the usual dosage of Vagifem/Ovestin in order to keep urinary symptoms at bay?  I feel like I might need to repeat the vagifem daily for 3 months again.  TIA for any input! 

[CLKD]

MayB put two doses up there - 1 mid-afternoon, another in the evening.  On alternate nights for 2-3 weeks.  VA treatment is usually for life.  Even when ladies take HRT they may require 'vagifem', 'ovestin' etc. to keep the vaginal area healthy.

The dip stick rarely shows evidence of infection, to be sure a sample MUST be sent to a Lab. for growing so that if necessary, the correct AB can b e prescribed: 3 days isn't enough, iwht correct treatment it's usually 7 days.

When I get a flare up as I stop passing urine my body goes into goose bumps  .  I have found that 2 Nurofen 3 times a day helps too.

Let us know how you get on.

[Flossieteacake]

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.

[cjmca]

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 

[CLKD]

Do U have a BOOTs in your area, there is a new product called I think 'gina' for VA.  Over the Counter. 

You will feel a lot better getting the VA under control.  It's about time that the Health Minister was made aware as to how difficult/impossible it is to source menopause requirements!

[cjmca]

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    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 

[cjmca]

Do U have a BOOTs in your area, there is a new product called I think 'gina' for VA.  Over the Counter. 

You will feel a lot better getting the VA under control.  It's about time that the Health Minister was made aware as to how difficult/impossible it is to source menopause requirements!

Unfortunately it's not being made available in Ireland - and I think you have to be over 50 to get it over the counter in the UK (I'm 40).  But my Mum is visiting the North of Ireland shortly and is going to get a supply of it... I'd say it'll be years before it becomes available here, if at all... 

[CLKD]

It's not good enough.  Is there a MIND Charity walk-in near you?  Have a lookC at their website ........... ?

[Flossieteacake]

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    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 

It is awful you have had to fight to get diagnoses. I have read quite a lot about women being fobbed off about things and years later realising they had something that went undiagnosed. I have had quite a bit of that myself and I understand the need to fight all the time. It is just so draining.

You are doing all you can with the VA and things should improve for you there.

I cannot understand why mental health is still being ignored and treated like a person is 'complaining'. It is disgusting you are not being listened to and treated you like you just want a benzo. I really hope you can get the PMDD diagnosis.

I know Autism is often not picked up on in women. My friend is fighting to get a diagnosis despite her brother having had a diagnosis. It is so much more difficult for women.

Urgh, why the lecture from the GP when they know you been issues the benzos as vital treatment. It is all very well giving you a lecture but what matters is you getting through it at the time.

You have nothing to be sorry for. This place is here to support and listen.

[cjmca]

It's not good enough.  Is there a MIND Charity walk-in near you?  Have a lookC at their website ........... ?

No unfortunately not - but I do have an excellent psychologist that I see whenever things are rough.  However it's getting any other medical practitioner that has responsibility for my physical health, to take on board the affect of hormones on my mental health that is now hugely problematic.  I do feel that if I can get an official diagnosis, it might make things a little easier in that regard, and I'm hoping to be able to get that from another consultant that I'm in touch with presently. 

I just don't understand why it has to be this damn difficult... PMDD is awful enough as it is.  As is bladder pain!  All I can do is keep chipping away at it... 

[CLKD]

 

[cjmca]

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    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 

It is awful you have had to fight to get diagnoses. I have read quite a lot about women being fobbed off about things and years later realising they had something that went undiagnosed. I have had quite a bit of that myself and I understand the need to fight all the time. It is just so draining.

You are doing all you can with the VA and things should improve for you there.

I cannot understand why mental health is still being ignored and treated like a person is 'complaining'. It is disgusting you are not being listened to and treated you like you just want a benzo. I really hope you can get the PMDD diagnosis.

I know Autism is often not picked up on in women. My friend is fighting to get a diagnosis despite her brother having had a diagnosis. It is so much more difficult for women.

Urgh, why the lecture from the GP when they know you been issues the benzos as vital treatment. It is all very well giving you a lecture but what matters is you getting through it at the time.

You have nothing to be sorry for. This place is here to support and listen.

I had a man comment on TikTok the other day that "there's suddenly all these people catching autism".  Well nevermind the "catching" bit, but I asked how many of these "people" he'd noticed are female... it then dawned on him.  The diagnostic criteria for women is different from the criteria for men, which so far is all that the testing for women has been based on.  Sadly if I had been assessed before now, likely nothing would have come of it.  But I'm having to pay close to €2k for a private assessment, the wait list in Ireland is years and years. 

Frankly I'd just like to have official diagnosis letters for autism, ADHD, Visual Snow Syndrome & pelvic floor dysfunction, then I feel I might have a chance of being listened to.  I have one for the VSS, just in the process of collecting the rest...!  I do feel if I was a man, my medical care would have been an entirely different (and much cheaper) experience.   

It's all just exhausting, but no choice but to battle on with it all!

[Minusminnie]

It's not good enough.  Is there a MIND Charity walk-in near you?  Have a lookC at their website ........... ?

No unfortunately not - but I do have an excellent psychologist that I see whenever things are rough.  However it's getting any other medical practitioner that has responsibility for my physical health, to take on board the affect of hormones on my mental health that is now hugely problematic. 

Presumably there is some feedback to your GP from the psychologist you see ?

If you are thinking pelvic floor dysfunction (and you seem willing to pay as you have mentioned further on in another post re getting a diagnosis) it might be worth seeing a womens pelvic floor physio privately for an internal assessment.

Scraping my memory there was a lady called Maeve Whelan in Ireland with a good reputation and who set up training for others in pelvic physio.  Might be worth looking up.

[cjmca]

It's not good enough.  Is there a MIND Charity walk-in near you?  Have a lookC at their website ........... ?

No unfortunately not - but I do have an excellent psychologist that I see whenever things are rough.  However it's getting any other medical practitioner that has responsibility for my physical health, to take on board the affect of hormones on my mental health that is now hugely problematic. 

Presumably there is some feedback to your GP from the psychologist you see ?

If you are thinking pelvic floor dysfunction (and you seem willing to pay as you have mentioned further on in another post re getting a diagnosis) it might be worth seeing a womens pelvic floor physio privately for an internal assessment.

Scraping my memory there was a lady called Maeve Whelan in Ireland with a good reputation and who set up training for others in pelvic physio.  Might be worth looking up.

No, my psychologist doesn't communicate with GP - but she has referred me for the autism/adhd assessment and once that's done, there'll definitely be feedback for GP to consider.  Hopefully the same will happen re: PMDD, am just in the process of tracking symptoms/HRT dosages etc.

I used to see Maeve back in the day when I first got interstitial cystitis, she's absolutely brilliant.  I moved town and now see a lady who used to work in Maeve's practice who is local to me, and she is also fantastic.  I definitely feel like the PMD has flared up - I wasn't having certain symptoms until I lifted a 15kg suitcase onto a baggage belt at the airport... suddenly almost peed myself.  Oops     Back to stretching glutes/back/hips & using the IC Relief wand... I know remission is possible from both IC and PFD, I was running pain free a month ago.  Just have to chip away at it... 

[Minusminnie]

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. 

Is it worth trying an email to this consultant explaining that you stopped the vagifem and ovestin but it was helping and that you just need a letter from him to a GP so that you can restart it at that level ?

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I definitely feel like the PMD has flared up - I wasn't having certain symptoms until I lifted a 15kg suitcase onto a baggage belt at the airport... suddenly almost peed myself.  Oops   
 

I just hope that you were going somewhere nice.  (I've done similar lifting lump of a grandson knowing that i shouldn't really be doing it).