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[Ziggy]

Sorry for jumbled subject title.  My brain has stopped working as I have had a day of discomfort and I am totally fed up 😫

😫😫. The problem I am having is communicating to people around me, just how much I am struggling. My husband is a sweetheart and gave me a big hug, when I was sitting crying my eyes out earlier. I'm no prude but I don't find it easy talking about my issues.


After reading how it affects so many women, I decided to confide in a few female friends. One was great, she has loads of issues but nothing like I have. Unfortunately I have now put the fear of God in to her 😳..but she is grateful that I have made her aware as she has never heard of it. I then confided in my sister. She is older and usually quite sympathetic. She just looked at me and snorted..Well I've never had anything like that! I got a bit teary when I was talking to her and was quite shocked by her attitude.

As I have mentioned before I am on dialysis and when I first got uti symptoms I asked for advice from one of the nurses. Her attitude left me speechless as she then announced in a loud voice..how do I know if you have a urine infection. My discreet question was met with a loud answer that at least 10 other patients could hear. When I asked another nurse, she looked at me as if I had grown 2 heads and then said..its your age

🙄..Sometimes when I am on dialysis I need to use the bathroom due to my bladder issues. Some of the nurses are great and take me off the machine, no fuss etc. Others say just use a commode. I refuse as I literally have 6 men less than 1m apart and only a curtain separating us. I actually had to argue with a male nurse yesterday. I wanted to scream at him..you haven't a clue what I'm going through. I have also discovered haemodialysis can actually cause even more vaginal dryness due to fluid removal. So why these nursing professionals are not aware of these conditions, is absolutely shocking.

I just keep reading how common all these issues are but it still seems quite a "taboo" subject matter. Sorry for my little rant, its just starting to really annoy me. This community is like my safe place. Reading other women's experiences and advice is a blessing 🙏....Does anyone else find it difficult to talk to people face to face about how you are struggling..both mentally and physically?

[CLKD]

U rant away!

I don't talk to any1 other than my GP, Nurse Practitioner, DH and friends that suggest that they have trouble which may be VA.

Who is overseeing your dialysis?  Perhaps buy a few copies of 'me and my menopausal vagina' - written by a Member of the Forum several years ago, I believe that copies are available on Amazon.  Then hand to the dialysis dept.?  There is no reason why staff should be aware of VA unless affected especially men but you are entitled to privacy and respect!

I would ask for an appt with the Consultant, take along DH to explain the current difficulties.  OK it probably is our age which means that if some1 makes that comment, that they should perhaps have knowledge of what they actually mean?  Do U have a support Nurse for 24/7 contact?

Let us know how you get on.

[Ayesha]

Sorry for jumbled subject title.  My brain has stopped working as I have had a day of discomfort and I am totally fed up 😫

😫😫. The problem I am having is communicating to people around me, just how much I am struggling. My husband is a sweetheart and gave me a big hug, when I was sitting crying my eyes out earlier. I'm no prude but I don't find it easy talking about my issues.


After reading how it affects so many women, I decided to confide in a few female friends. One was great, she has loads of issues but nothing like I have. Unfortunately I have now put the fear of God in to her 😳..but she is grateful that I have made her aware as she has never heard of it. I then confided in my sister. She is older and usually quite sympathetic. She just looked at me and snorted..Well I've never had anything like that! I got a bit teary when I was talking to her and was quite shocked by her attitude.

As I have mentioned before I am on dialysis and when I first got uti symptoms I asked for advice from one of the nurses. Her attitude left me speechless as she then announced in a loud voice..how do I know if you have a urine infection. My discreet question was met with a loud answer that at least 10 other patients could hear. When I asked another nurse, she looked at me as if I had grown 2 heads and then said..its your age

🙄..Sometimes when I am on dialysis I need to use the bathroom due to my bladder issues. Some of the nurses are great and take me off the machine, no fuss etc. Others say just use a commode. I refuse as I literally have 6 men less than 1m apart and only a curtain separating us. I actually had to argue with a male nurse yesterday. I wanted to scream at him..you haven't a clue what I'm going through. I have also discovered haemodialysis can actually cause even more vaginal dryness due to fluid removal. So why these nursing professionals are not aware of these conditions, is absolutely shocking.

I just keep reading how common all these issues are but it still seems quite a "taboo" subject matter. Sorry for my little rant, its just starting to really annoy me. This community is like my safe place. Reading other women's experiences and advice is a blessing 🙏....Does anyone else find it difficult to talk to people face to face about how you are struggling..both mentally and physically?

It seems that it's one of the most difficult subjects to talk about and the reason GSM (VA) is a total mystery to a lot of medics.  I've tried to bring up the subject of HRT but when I do I clear the room, no one wants to know, that is until it comes to the time when they start to develop symptoms and wonder what the hell is going on.
Its not easy to talk about and the best thing to do is try and find the regime that will eventually work for you, it does take a long time to feel the benefits of the treatment.  Do as much research as you can, knowledge really is power.

Its late and can't remember if I have already posted this for you but its a good study.
https://bssm.org.uk/wp-content/uploads/2023/02/GSM-BSSM.pdf

[bombsh3ll]

I think there are two issues - one it doesn't sound as if your VA is being properly treated.

Like you said, dialysis is drying and you may need more intensive treatment than the average woman, so do raise this with your GP regarding adequate estrogen and possibly the addition of prasterone if needed. (Vaginal dhea).

Secondly that is shocking care from the dialysis nurses who should be attentive to your comfort, privacy and dignity.

I would consider writing a complaint letter to the hospital or health board - there is usually a patient advice or advocacy service that can help with this.

[Ayesha]

If that's the case that dialysis is drying then definitely discuss this, time to be assertive with your health care providers. Its the same when taking antihistamines, they make GSM (VA) symptoms worse and further treatment is needed either in dosage or another form of treatment.

Make those nurses listen, print off the GSSM/BSSM document and hand it to them. 

[MrsMitch]

I'm so sorry you're having these issues, Ziggy, but, as youve seen, you are not alone here.
I was having a hysteroscopy under GA last year on a day surgery unit for all things gynaecological and as I was giving the nurse my history pre op, she had never heard of VA either. I have found my female friends the least sympathetic to the point I never mention it to them and would now never speak about it to any new friends. Sadly, you seem to gave to have the condition to get any empathy.
It does sound like you need some specialist help, if you're not already. It needs a dedicated Menopause specialist not just a gynaecologist- I saw one for over 3 years and she misdiagnosed VA and refused to consider my pain/issues could be menopausal.
Read as much as you can on the subject because you will still need to ensure any treatment or advice you are given is current and correct.  I will look up a post I put a link in the specialist gave me and post it for yiu to read.
It's very sad that it does leave you needing to rant due to the lack of knowledge and how hard it is to get the right treatment. Sometimes the pain can be overwhelmingly unbearable but the right treatment really does make life easier. Currently I have no pain, after 12 years with no treatment.  So there is relief out there for you. 

[MrsMitch]

Ziggy, if you google: GSM BSSM, you will find a helpful download to read through.

[Ziggy]

Thank you everyone for taking the time to reply. I can't tell you what a lifeline it is for me to have you here. I will read all your links this afternoon, as I am attached to my dialysis machine for 4 hours. 🤪🤪🤪...I haven't actually been too bad this morning...touch wood 😳😳..so I'm feeling a bit more positive than I was yesterday. Yes I'm starting to realise dialysis could have a big affect on vaginal dryness. I am going to.make an appointment to see my GP. I might ask if she can write to my consultant regarding my situation. Then between the two of them, they can prescribe the appropriate medication. 
I actually found a menopause support group near me. The lady who started it, goes into companies & hospitals etc and talks to people about the menopause. I might just get in touch and see if she could pay a visit to my dialysis unit!!

Yes I think I will keeping this to myself regarding family and friends etc from now on. It is bad enough to deal with, without stressing about other people's reactions.

Thank you so much ladies. Hope you all have a lovely weekend x

[Ayesha]

Such a positive post, Ziggy. Keep us updated on how it all goes xx

[CLKD]

Good idea to contact the support group - do point out the book 'me and my menopausal vagina' too !