Menopause Matters Forum

General Discussion => New Members => Topic started by: Tigress on December 23, 2022, 07:21:45 PM

Title: Newbie with VA but complicated
Post by: Tigress on December 23, 2022, 07:21:45 PM
Hello ladies,

Blinking, stinking menopause, eh?

I’m developing problems with VA but I have, in the past, had Er+ breast cancer.  There is a difference of opinion in the BC community about the use of oestrogen creams and pessaries for VA.  Oncologists largely forbid them but some specialists believe that the amount of oestrogen contained in them is negligible so they are allowable in the short term.

So my questions are - are there any ladies on here who have had BC and VA and, if so, how did you bring it under control?

Have any ladies with or without BC controlled VA without the use of oestrogen creams/pessaries?  If so how?

Does relaxation help with the discomfort? 

I’m 67 now and no longer use my gubbins for its intended use so just want to get the discomfort under control.  My view is that I may only need Ovestin.

Thank you for any help!!!

Merry Christmas!
Title: Re: Newbie with VA but complicated
Post by: CLKD on December 23, 2022, 07:27:40 PM
Hi!

No contest I'm afraid.  VA needs treatment on a regular basis regardless.  No one should suggest otherwise. 

Some have had a reaction to 'vagifem' in the way of headaches or nausea.  I have used 'ovestin' successfully - there is such a small chance of it infiltrating the body after the initial 2/3 weeks loading at night, that Quality of Life is important. 

Do read the 'bladder issues' thread and those relating to vaginal atrophy.  4 me it began with intermittent urine infection-type symptoms of the need to pee almost continually: relieved by antibiotics.  However, appropriate treatment is necessary which stops the 'infection' symptoms.

Once my GP had sorted out treatment several years ago, my symptoms have been under control.  Should I feel the need2P I swallow 2 Nurofen capsules 3 times a day to ease that nip as the urine flow stops.  There was never any discussion about my breast treatment in the 1990s, VA can become so severe that surgical intervention may be required to separate the vaginal lips.  VA has caused many women to stop working on a regular basis; it can interfere with sexual relations; when bad it can stop women sitting for very long .......

Title: Re: Newbie with VA but complicated
Post by: CLKD on December 23, 2022, 07:29:19 PM
Why would the BC Community know about how VA treatment will affect prognosis etc.  :-\.  Quality of Life and listening to your body is important.  There are several breast consultants who consider that full HRT is necessary even if a lady has had breast disease.  I can't remember his name though  ::)

 :welcomemm:  browse round.  Make notes  ;)
Title: Re: Newbie with VA but complicated
Post by: Cara999 on December 23, 2022, 09:36:10 PM
Without treatment VA will only get worse, it can also take time to work so the sooner you start the better. Some ladies opt out of using estrogen and just use moisturisers, I certainly wouldn't and can't see how that would help but each to their own. Good luck 🥰 xx
Title: Re: Newbie with VA but complicated
Post by: CLKD on December 23, 2022, 10:04:40 PM
My condition is under control after years of regular treatment in that I rarely require 'ovestin' ....... I recognise when it begins to niggle. 
Title: Re: Newbie with VA but complicated
Post by: Tigress on December 24, 2022, 09:49:53 AM
Why would the BC Community know about how VA treatment will affect prognosis etc.  :-\.

Hi and thanks for your reply. 

In answer to your question, the majority of breast cancers, mine included, are fed by oestrogen.  Once you’ve had the tumour removed, generally you have chemotherapy and/or radiotherapy and then you have to take a drug for between 5-10 years which has the sole purpose of removing every last vestiges of oestrogen from your body in order to prevent the cancer returning. 

So when women like me get symptoms of VA due to the cancer drugs, you are forbidden from using oestrogen products like Vagifem as they may put back oestrogen into the body when the whole point of the course of treatment has been taking it out! 

Some specialists think that the amount of oestrogen in these vaginal products is so small that it won’t make a difference but the vast majority won’t allow it and won’t write a prescription for them.  I know you can source the pessaries and cream without a prescription but it will become very expensive over time.  Vaginal moisturisers are pretty useless on their own.

If there’s one thing worse than having VA it’s having VA and breast cancer.
Title: Re: Newbie with VA but complicated
Post by: Joaniepat on December 24, 2022, 10:09:44 AM
Hi Tigress. If you join the private Vaginal Atrophy Facebook support group, you will find up to date resources on this issue. There are quite a few members in your position there, some using local oestrogen. I think the bottom line is that it should be up to you to decide. The group is now closed until the new year, but it's a good group for information and advice.
Best wishes,
JP x
Title: Re: Newbie with VA but complicated
Post by: CLKD on December 24, 2022, 10:38:40 AM
Morning Tigress - tnx for the explanation.   Vaginal atrophy, which is due to a loss of oesgtrogen as we age, may b hastened with chemicals.  As levels drop the body may become dry: inside and out; skin, deep in the ears, nostrils, eyes, vagina, anus, as well as muscles may become lax = aches and pains. Oh the Joys of ageing  ::).

When I found the lump in my breast [Nov 1994] I had lumpectomy followed by a week of rest; biopsy of said lump showed 'changes in the margins' so 7 days later I underwent further surgery, deeper in2 the area as well as lymph nodes removed which were clean.  Phew!  I had precautionary radiation treatment: small blue tattoos in the areas: and Tamoxifen - which almost killed me  :-\.  [long story short. ]. The drain site area is still sore on contact otherwise I've been OK.

There is a theatre of thought that gives chemotherapy prior to surgery to shrink the tumour.  All the while I wanted to 'get on with treatment' to rid myself of any nasties.  If that makes sense  :-\

As I left the Oncology Dept in 1996 the Consultant muttered "No HRT for you my Lady".  I know I have been lucky. VA has been problematic, otherwise ....... Quality of Life is important at all stages of Life.  This is something that male surgeons in particular don't consider in the overall treatment of breast cancer patients.  After all, that bus might be along behind us B4 cancer restarted if we took appropriate treatment. 

It is awful that Surgeons still consider 'no HRT' when VA can make a lady unable to work, move, sit, continue be active  :-\.  I wonder how many patients take 'no HRT' as Gospel and suffer - which really isn't necessary or ask for facts relating to incidences of breast disease being triggered by using VA treatment. 

Let us know how you get on?  R U still undergoing regular reviews, I would be OK until the night B4  ::) .....
Title: Re: Newbie with VA but complicated
Post by: Tigress on December 24, 2022, 10:48:08 AM
Morning Tigress - tnx for the explanation.   Vaginal atrophy, which is due to a loss of oesgtrogen as we age, may b hastened with chemicals.  As levels drop the body may become dry: inside and out; skin, deep in the ears, nostrils, eyes, vagina, anus, as well as muscles may become lax = aches and pains. Oh the Joys of ageing  ::).

When I found the lump in my breast [Nov 1994] I had lumpectomy followed by a  :-week of rest; biopsy of said lump showed ' changes in the margins' so 7 days later I underwent further surgery, deeper in2 the area as well as lymph nodes removed which were clean.  Phew!  I had precautionary radiation treatment: small blue tattoos in the areas: and Tamoxifen

Morning!  So sorry for giving the BC lecture had no idea you’d been through it.  No returns in 26 years is a fabulous result.

Yes I’m on Letrozole for 5 years and it is absolute filthy poison.  I’m terrified of getting mets though so am going to ploughing on with it.  I know so many women just give it up and take their chances and I can foresee a day I do that but if I can control the side effects and continue, I will.  I’m 67 and have set myself the target of reaching 80, after that whatever happens, happens.  I can think of worse ways to die than breast cancer and have cared for people who’ve had worse deaths.

Anyway I shall probably resort to the cream as things haven’t got out of hand yet and will discuss it with the oncologist in January.  Trouble is, VA is irreversible so is there any point stopping the Letrozole as it’s not going to make the Ava any better if I do?

All the best.
Title: Re: Newbie with VA but complicated
Post by: Tigress on December 24, 2022, 10:50:15 AM
Hi Tigress. If you join the private Vaginal Atrophy Facebook support group, you will find up to date resources on this issue. There are quite a few members in your position there, some using local oestrogen. I think the bottom line is that it should be up to you to decide. The group is now closed until the new year, but it's a good group for information and advice.
Best wishes,
JP x

Thank you SO much for this, I had no idea it existed.  Will look into it in the New Year.

Merry Christmas!
Title: Re: Newbie with VA but complicated
Post by: CLKD on December 24, 2022, 12:17:15 PM
I was surprised when I was diagnosed how many people living close were similarly affected.

VA isn't irreversible.  It can be brought under control with appropriate oestrogen replacement.  Don't read the leaf let in the boxes as they are so out of date and refer to over all HRT regimes, of which VA treatment isn't one.  Dr Newsom is trying to get those leaflets altered so that they don't scare the pants off GPs etc..

No worries about 'a lecture'.  It is obvious that Oncologists haven't updated their information  >:( .  Nor have they're listened to ladies who require other treatments in order to get various peri/menopause symptoms under control.  We are lumped together without individual discussion about our needs!

I was told that 'tamoxifen' was necessary to take for the [magic] 5 years.  I stopped after 3 months, took it after a break of 6 weeks then stopped it completely.  As I hadn't felt physically ill during diagnosis or treatment: emotionally was different : I wasn't prepared to feel ill for the rest of my Life.  As a recovering anorexic it simply wasn't worth continuing.  I do wonder what these 'oestrogen suppressants' drugs do, my friend died of womb cancer due to Tamoxifen  :'(.  She was 15 years post breast surgery.

Better to use cream prior to VA becoming troublesome, the sooner 1 does a loading period to find out how often it might be required, the sooner 1 can drop down to the every 3rd and 5/6th nights to see if it's under control. 

When U visit your Oncologist do ask how much research has been done into the actualities of VA treatment causing breast disease? As well as who funded any Research ;-).  Cynic?  Moi?

Enjoy your weekend.