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Author Topic: Absolutely demented  (Read 541 times)

Ziggy

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Absolutely demented
« on: June 28, 2024, 08:32:28 AM »

Hi Everyone
I am so glad I have found this community. I am 53 years old and apart from hot flushes and terrible brain fog, i seemed to have an "easy" menopause.....until now. Iam on haemodialysis and about 8 weeks ago, I had UTI symptoms. Recieved antibiotics but no infection was detected.I discreetly mentioned it to one of the dialysis nurses, who then announced in a loud voice, so at least 20 other patients could hear...how am I suppose to know why the antibiotics haven't worked. I was mortified. I then confided in an other nurse, who just looked at me, as if I had grown 2 heads. I felt so embarrassed that I suffered in silence for the next few weeks. I googled everything..convinced I had cystitis etc..then I eventually spoke to a GP. She said it was my age and probably  Vaginal Atrophy. I have to admit I wasn't convinced. I then started googling and then realised she was right. I started taking Gina as I couldn't get a Dr's appointment. On Tuesday I was eventually prescribed Estriol. What I want to know, is how do people cope with this condition??? I am absolutely demented. It is taking over my life. I am urinating about 20 times a day. It is like acid. I go to the toilet and then I'm back about 5 mins later. I then have urethra pain, that I can only describe as thousands of tiny needles stabbing me. I am not sleeping. I am constantly stressed at work, worrying about having an "attack"...then I have to contend with dialysis. I have to sit for 4 hours attached to a machine. I am allowed on toilet break and usually have to argue with a nurse, who wants me to use a commode. I feel.as if I'm the only woman I know, that is suffering from this. I now look at everyone and think, do they have this, if they do..how are they managing. I have spoken to a couple of friends but they have never had any issues. My husband has been great but I feel so frustrated that nobody knows the pain and discomfort this is causing me. It is literally taking over my life. Compared to this, kidney failure is a walk in the park. In the past when i heard the term..vaginal dryness, I just thought add a bit of lube and you would be fine. I never realised how traumatising this condition is. It disgusts me when I read about other women's experiences and how they are dismissed by the medical professionals. Sorry for my long rant but after another sleepless night, I am losing the will to live. Wishing everyone a good pain free day 🙂
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Ayesha

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Re: Absolutely demented
« Reply #1 on: June 28, 2024, 09:01:21 AM »

Its good to have a rant and you have certainly come to the right place, so many of us on here have been exactly where you are today but we have come through it thanks to the treatments available. Here is a link that I know you will find helpful and educational.

https://www.menopausematters.co.uk/forum/index.php/topic,64837.msg895647.html#msg895647

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Ziggy

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Re: Absolutely demented
« Reply #2 on: June 28, 2024, 09:38:12 AM »

Thank you for the reassurance Ayesha. I have read all the forums regarding Vaginal Atrophy. If I am being honest, it is only reading personal accounts from ladies, like yourself, that's keeping me going! It was the same with my kidney failure. I felt I was the only one going through this and felt so alone. It was only when I joined community forums that I felt I had found my "safe place". I know it will get better. However every day is a challenge. I know I am one of the lucky ones as I have a diagnosis quite early. It angers me to read about other women's experiences. Thanks again x
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aj1971

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Re: Absolutely demented
« Reply #3 on: June 28, 2024, 10:08:35 AM »

Ziggy, I experienced this to a lesser extent in my forties (now same age as you). I understand how debilitating it can be. Vagifem (same as Gina) worked well after a longer 'loading dose' period - 6 weeks - then dropped down to 2/3 times per week. I don't know if you also use systemic HRT, e.g. patches or oestrogel with progesterone (if you have a womb to protect)? It seems some women need both to bring things back to normal. But ideally you want some advice from a menopause specialist or switched-on GP who really understands what can be done to help. For example, I don't know if you can double up on Vagifem for a while, until things settle. There used to be a higher dosage available. Hope you soon find you get your life back. x
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Jules

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Re: Absolutely demented
« Reply #4 on: June 28, 2024, 10:32:14 AM »

Ziggy I get urethra pain but not as bad as that because I'm using topical estrogen.  It has started recently despite being on treatment.  Sometimes it's like a itching feeling just in the opening,  other times tenderness. I've had to increase the frequency of my vaginal pessaries (vagifem) to every night and use estriol cream externally morning and night mixed with Yes moisturiser. The vagifem has had a more noticeable impact. I'm still getting the sensation in my urethra but not bad, I think I'm so worried I'm focusing on it too much. I used to get the UTIs too until I started using vagifem The topical estrogen though I'm sure  will help. You've to persevere and get a routine going. I wish I'd known early and started then. It would have stopped the deterioration I've had. Try to get the treatment and get going on it, pop some estriol cream around the opening. Hopefully you'll feel better soon.  There was a time when I was focused on my other health issues, even my aging face. Now all I think about is what's going on in my knickers!!
« Last Edit: June 28, 2024, 10:46:58 AM by Jules »
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CLKD

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Re: Absolutely demented
« Reply #5 on: June 28, 2024, 10:43:36 AM »

U rant away.  Some medical staff have no bed-side manner  >:( and it's hard to come up with an immediate response to her reaction!  Bet you could say something now  ::)

 Vagifem and/or Ovestin; as well as mayB trying 'sylc' or 'yes' products .  I slare 'ovestin' round the outer labia to stop it becoming dry and itchy as well as using internally.  Some require nightly treatment for years which many Nurses/GPs aren't aware of, sticking to the twice a week note in the MIMMS!

Let us know how you get on! 
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Ziggy

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Re: Absolutely demented
« Reply #6 on: June 28, 2024, 01:14:59 PM »

Thank you aj. Yes I have read about doubling up and I will look into that as an option. I am a bit reluctant as when I insert Gina, I start getting pain around the opening about 5 minutes later. As others have mentioned it could be fillers etc but I don't usually have any sensitivity to these sorts of things. I can only get Estriol as I can't take HRT. I tried getting an appointment with the Dr who suggested it might be AV. However she was on holiday, so I was seen by a female locum. She was very sympathetic and let me have a good cry 😢..I have to go back in 2 weeks and see how things are. Thank you for taking the time to reply. It is much appreciated x
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Ziggy

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Re: Absolutely demented
« Reply #7 on: June 28, 2024, 01:26:07 PM »

Oh Jules you did make me laugh, regarding the last bit of your reply 🤣🤣🤣..that pretty much sums up my life right now!! If anyone looked at my recent search history..they will think I have an obsession with vaginas 😳😳...
When I started my Estriol on Tuesday night I thought this is great, hopefully I should get some relief soon. About 30 mins my urethra area was on fire. I was clutching my pillow, with a bottle of cold water between my legs, swearing like a trooper. My husband was trying to reassure me, this was a good thing as it probably ment it was working!! So I have tried to avoid that area with the cream!! I know things will take time, it's just a very challenging time. Thanks for your reply x
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Ziggy

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Re: Absolutely demented
« Reply #8 on: June 28, 2024, 01:39:15 PM »

Hi CLKD
Oh don't get me started on bedside manners!! Having been on dialysis for 2 years, I have met some amazing nurses and some who have absolutely no empathy. I mean if I can't confide to a nurse about urine issues in a bloomin dialysis unit, where can you 🙄🙄..unfortunately due to theses two nurses and their attitude, it made me very embarrassed and not willing to confide in any of the staff regarding the issues I am having. I also agree about using the medications longer than stated. If there is one thing I have realised..listen to the people that are experiencing the same issues. Learn from them!!! Doctors just seem to tick the boxes and if they can't tick the box, then they aren't interest. Thanks for taking the time to reply
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Ayesha

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Re: Absolutely demented
« Reply #9 on: June 28, 2024, 01:59:15 PM »

A lot of women have no idea what is happening to them and rely on the medics having the answers and when they don’t it all becomes one long nightmare.

Ziggy, you should be proud you are way ahead of the game because you are doing your research and getting well informed, and as you probably already know the treatment does take a while to work and its about perseverance and patience. Do let us know how you get on and hopefully you will feel a lot better soon down below!
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Jules

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Re: Absolutely demented
« Reply #10 on: June 28, 2024, 02:07:41 PM »

Oh Jules you did make me laugh, regarding the last bit of your reply 🤣🤣🤣..that pretty much sums up my life right now!! If anyone looked at my recent search history..they will think I have an obsession with vaginas 😳😳...
When I started my Estriol on Tuesday night I thought this is great, hopefully I should get some relief soon. About 30 mins my urethra area was on fire. I was clutching my pillow, with a bottle of cold water between my legs, swearing like a trooper. My husband was trying to reassure me, this was a good thing as it probably ment it was working!! So I have tried to avoid that area with the cream!! I know things will take time, it's just a very challenging time. Thanks for your reply x

You laugh away. Hope you make some progress in the next two weeks.
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Ziggy

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Re: Absolutely demented
« Reply #11 on: June 28, 2024, 03:38:38 PM »

A lot of women have no idea what is happening to them and rely on the medics having the answers and when they don’t it all becomes one long nightmare.

Ziggy, you should be proud you are way ahead of the game because you are doing your research and getting well informed, and as you probably already know the treatment does take a while to work and its about perseverance and patience. Do let us know how you get on and hopefully you will feel a lot better soon down below!

I know Ayesha. It really has opened a Pandoras box for me. Almost all my information and advice has came from the Internet. If medical professionals are still in the dark regarding this awful condition in 2024, how did our mother's and grandmother's cope?? Its very sad to think of how many women past and present have suffered. I will update and thanks again
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Ziggy

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Re: Absolutely demented
« Reply #12 on: June 28, 2024, 03:39:56 PM »

Oh Jules you did make me laugh, regarding the last bit of your reply 🤣🤣🤣..that pretty much sums up my life right now!! If anyone looked at my recent search history..they will think I have an obsession with vaginas 😳😳...
When I started my Estriol on Tuesday night I thought this is great, hopefully I should get some relief soon. About 30 mins my urethra area was on fire. I was clutching my pillow, with a bottle of cold water between my legs, swearing like a trooper. My husband was trying to reassure me, this was a good thing as it probably ment it was working!! So I have tried to avoid that area with the cream!! I know things will take time, it's just a very challenging time. Thanks for your reply x

You laugh away. Hope you make some progress in the next two weeks.

Thanks Jules 👍 😁
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