Vaginal atrophy. Why didn't someone warn me?

There’s a long list of things nobody warns you about when you go through cancer treatment. It is fairly well known that chemotherapy, radiation therapy and significant surgery all carry risks and side effects but when your life hangs in the balance most people will agree to anything. I did.

My biggest shocks were the residual peripheral neuropathy, the brain fog, the extent to which losing my nipples impacted my intimacy, and the way chemotherapy slams you into menopause. Think ten hot sweats a night that are so bad I needed to keep towels under me and change them.

The neuropathy has been accommodated. It’s just like having mild pins and needles in your hands and feet and as long as I keep warm it’s not too painful. The brain fog has taken some work, but I have recovered my pre-cancer brain. The hot sweats have subsided to one or two a night and they are much less sever. I have grieved the loss of my nipples. Acceptance is the only help there.

My last visit to the GP included a regular pap smear. ‘You have evidence of vaginal atrophy’ he told me in that voice that sounds like he’s reporting the weather. Cloudy with a chance of incontinence and infection. I’d never heard of it before. It’s apparently a common side effect of menopause and like all other treatment related symptoms, it has arrived with a vengeance.

I hit the internet (of course) and discovered that vaginal atrophy can make intercourse difficult and painful, urinary incontinence more likely and can also increase the incidence of thrush and urinary tract infection. Oh joy! I also noticed something that wasn’t anywhere on the internet. It’s really difficult to find a toilet paper that doesn’t suddenly shed and leave a residue. This product is obviously designed for a self-lubricating vagina and nobody has thought to let manufacturers know about post-menopausal difficulties with their products.

The usual treatment for vaginal atrophy is apparently some kind of hormonal cream or hormone replacement therapy, but having had breast cancer (even the non-hormonal kind) my doctor wasn’t keen. He recommended a non-hormonal vaginal lubricant available from the chemist. It’s inserted using a plastic tube every three or so days. It costs about three dollars per tube. Unfortunately it doesn’t reverse vaginal atrophy. It just makes things a bit more comfortable. It is also sticky and might all come out at once when you least expect it. It’s better than nothing but not ideal.

One site I found recommended sex or masturbation on a daily basis. Ah the bitter irony that menopause chews up libido and spits out sexual activity as a treatment for side effects. My previously healthy interest in orgasms has been reduced to an occasional distraction. My husband and I are still loving and affectionate but like so many others in our position, intimacy has become more important than intercourse.

Meanwhile, my ability to urinate has become complicated. Clearly good vaginal lubrication was part of the whole process working properly and I now find myself trying to figure out how to keep the flow heading downwards and not across my thighs. I know this is odd and perhaps distasteful stuff to write about but that is exactly why I’m going there. It’s good to know you’re not alone.

Recently I was looking for a good gynaecologist (for someone else) and came across an article about laser therapy for vaginal atrophy. The same technology that is used to improve your wrinkles can be used to improve the tone and thickness of the vaginal walls. After months of enduring the slow collapse of my vaginal tone I headed back to my GP to ask him about it. “Oh yes, apparently it’s quite effective,” he tells me, as I resist the urge to growl at him for not giving me information about this treatment six months ago. Does he just assume I don’t plan on using my vagina anymore?

The treatment is marketed in Australia as Mona Lisa Touch Therapy. I’m amused to think that it’s supposed to give me an enigmatic smile as well as a return to vaginal health. It will involve an initial visit with a gynaecologist to determine if I am ‘suitable’ for the treatment at a cost (after rebate) of around $170. If I’m approved as suitable, each laser treatment will cost (after rebate) around $260. I should see some improvement after the first treatment but for the optimal result three treatments are recommended. I haven’t checked, but I’m guessing my health fund will not pick up the slack. I still think it’s worth having. I’m booked in for my initial visit next Monday.

I’ll keep you posted on the results.


Reblogged from https://positive3neg.wordpress.com

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Comments

  • AfraserAfraser MelbourneMember Posts: 746
    Please do, I have been looking for more information on this. Vaginal atrophy is a thorough pain, to make matters worse I am at an age where it's hard to know what is "natural" and what is not. My neuropathy was pretty serious and took much of my attention but the vaginal problem was apparent within 6 months of starting Femara and atrophy is now sufficiently developed to make a Pap smear useless for any practical purposes (ultrasound instead). I have tried many gels and lotions, find them intolerably messy but mercifully my equally ageing husband and I have found accommodating the problem and finding other means of enjoyment more satisfactory than endless effort to try and reverse the problem!! The side effect was noted when I started treatment but "vaginal dryness" sounds less dramatic than atrophy, just as "pins and needles" didn't really accommodate intense pain in feet and possible inability to walk. Feet are now imperfect but pain free and I stop Femara next year! On the plus side, I was never nauseous, fatigued or chemo-brained for which I am still grateful. No such thing as a free ride on this journey!
  • positive3negativepositive3negative Member Posts: 314
    Thanks so much for your comment. I was a bit reticent about this post because it seems to be something that so few people want to talk about. I agree. 'Vaginal dryness' sounds like something mildly inconvenient. Atrophy is a lot more of an issue. The results for laser therapy, as far as I can tell, seem to make it worth the effort. Here's a link with more information. https://drmetawa.com.au/web/index.php/gynaecology/vaginal-atrophy.html
    Best wishes and thanks again. <3

  • AfraserAfraser MelbourneMember Posts: 746
    It's less spoken about, but certainly a topic of interest! There is a group you may find useful - the Lost Libido Ladies. I am sure someone can intro you to that group. 
  • primekprimek Broken HillMember Posts: 2,788
    Initially after chemo it was horrid for me and I have tried a number of lubricants and had no interest in sex at all as those nerves were affected too. Eventually though as I have mostly recovered from side effects of chemo some of those nerves have regenerated also. The dryness for me is now much less unless swimming a lot. I use a ph balance wash if I really need to. Of course lubricants are always needed with sex. First thing packed for holidays!

    We do have a group which has very low activity called Lost libido ladies and this details Mona Lisa Touch and various lubricants that can be used...Yess seems to be the one most ladies prefer.

    There is also a very low dose estrogen pessery that can be used and limited studies showed so low it only penetrated the vaginal wall not the whole body. 10mcg I believe.  The company of course doesn't want to say it is safe in case...it's not. 

    Some ladies have a compounding progesterone ones made and details are on group site.

    Wish you luck with your treatment. I have heard good results. Kath x
     


  • Summerhill38Summerhill38 Regional Vic Member Posts: 483
    edited September 2
    Hi @positive3negative
    FANTASTIC POST - GOOD ON YOUR FOR WRITING SUCH AN INFORMATIVE PIECE.
    I am sure heaps of us will appreciate your comments and perhaps once again be able to use our parts as nature intended !
    Summer  :-)
  • ZoffielZoffiel Member Posts: 728
    I would like to know if, and how, your Mona Lisa experience goes.

    I was absolutely shocked, when I finally decided that I felt like sex, to find that my bits had snapped shut!

    I'd expected some dryness, but penetrative sex was not going to happen. Several weeks later and having tried every lubricant that is allowed, my partner is now terrified he will hurt me so I have to deal with that as well. Desperation has lead me to coconut oil which is sort of helpful--I will spare you the details of trying to get that out of the jar to where it needs to be some time before it may be required--but the whole thing is making me all snarly. Humph.
  • UnicornkissesUnicornkisses Central CoastMember Posts: 270
    Hi @positive3negative thank goodness you did write this post.
    I have had vaginal atrophy since the beginning of menopause. 
    I also have Urge incontinence and bladder problems caused by it.
    I have been to a Urologist and Gynaecologist, had a bladder endoscopy and dilation, been on Oestrogen pessaries and low dose HRT to try and help the symptoms and then, of course, got Breast cancer!
    The Chemo made the vaginal dryness much worse.
    And thank you @primek, I never considered the nerves there might have been affected by the neuropathy, because it sure doesn't work like it used to. I am only a couple of months out of chemo, so I pray that improves.
    My GP will not consider allowing me back on the low dose Oestrogen pessaries as she considers it too risky as my cancer is ER +ve. They really helped though, so perhaps if you are not hormone positive they are a possibility.

    Currently I am using Vagisil wash, Replens lubricant, and think I might get the external lubricant too. 
    I did not know the dryness could cause the wetting of the thighs during urination.
    That started for me during chemo and I couldn't understand why, I though it might have been a weight issue. I will try the external lubricant and see if it helps that.

    I have to use panty liners or incontinence pads anyway (because although I am on medication for the Urge incontinence, the stress incontinence is unpredictable) so the lubricant coming out is not too much of an issue. I use it before I go to sleep and then the only time it tends to leak is first thing in the morning.
    I do resent the cost!

    Perhaps if you use the Replens or similar just wear a panty liner that night so the mess doesn't cause a problem.

    No, I wasn't warned about any of this either. And I tend to find that even if there are warnings of symptoms or side effects from the medical side, "uncomfortable" doesn't even begin to describe it.




  • AfraserAfraser MelbourneMember Posts: 746
    Good grief, you are unintentionally making me feel quite lucky! I didn't have any of those problems during chemo, just gradual "drying up" when I went on to Femara! And I was way past menopause when diagnosed with breast cancer. I know my oestrogen levels were pretty high "for my age". Oestrogen treatment was of course the standard fix at the outset, but clearly not for me. If there is any improvement when I go off Femara, that might be good until I start worrying about oestrogen and cancer again. What a roundabout, at least I can see the absurd side of it. Good luck everyone!!
  • brightspacebrightspace Member Posts: 157
    Hi Zoffiel  your whitty comments are a joy and continue to evolve  ..thankyou heaps!
    Pefhaps they need to be collated into a neW thread Zoffiels words of wizdom
    Cheers Bright
  • positive3negativepositive3negative Member Posts: 314
    Thanks for the great feedback from all of you. Great (as usual) to know that I am not alone. Replens is the internal lubricant I've been using. Externally I like Sylk, which is apparently made from kiwi fruit (but thankfully without the seeds!). It feels close to the real thing and doesn't have a strong unpleasant smell or taste the way some of the others do.
    Thanks for the advice about the 'no libido' group. I don't think I'm ready to join. I actually still have a libido. It's just not as wild as it used to be. :smiley:
  • primekprimek Broken HillMember Posts: 2,788
    The lost libido group is actually just about the problems you were discussing, nothing about libido at all. Some women are embarassed to discuss it on general forums. I thought sylk was removed off the market. If you want to read about women who actually have had Mona Lisa Touch. ..it is in that group as well as alternatives to estrogen pesseries that have actually worked for women done under prescription. 
  • mum2jjmum2jj Member Posts: 2,858
    Hiya @positive3negative,
    I too have been where you are.  I was actually plagued by UTI's.  As you may remember I am triple negative as well.  Both my oncologist, surgeon and GP told me it was safe to use ovestin cream, but I resisted for such a long time.

    I tried the replens and the sylk.  Replens was not very pleasant as it was just so messy and I actually feel it contributed to my UTI's. I actually thought Sylk had been taken off the market.   I have found yes products which are available in Australia (at a very expensive price) are far superior.  It is much cheaper to buy them from the UK in bulk and they have 25%off quite regularly. I find the VM individual applicators the best for daily use. I know you love to research so here is the site.  In the UK they are available on the PBS. 

    Because my UTI's were so bad (every 2 weeks and I was continually on antibiotics that made me feel like crap I did eventually use ovestin.  I am now however using the newer vagifem low dose pessary once a week and it does have only 10mcg of oestradiol. In the end it was a lifestyle choice, I could not go on the way I was with the UTI's. 

    As @primek said the lost libido ladies is really just a name given to that group a long time ago.  Most of the discussions are around vaginal atrophy.  There are quite a few discussions around mona lisa touch. It would be worth joining just to read the posts.   At the time I investigated it, Mona lisa touch  was around $1000 plus per treatment and no rebate.  It also appeared it was something that would need redoing regularly.  I just could not afford it.  The prices you quote, whilst not cheap are a lot cheaper than I researched and the fact that there is a rebate is fantastic. It's funny, pre BC I would have thought nothing of the cost, but after 2 diagnosis and numerous treatments and surgeries the bank balance ain't what it used to be.   I will watch with interest so please keep us posted.  If it works that will be fantastic.

    Paula xx


  • positive3negativepositive3negative Member Posts: 314
    Thanks Paula, 
    I'll have a look at that site. I should add that I have also had good results using rose hip oil externally. I just forgot all about it until I read my own post!! Time to start using it again.
    It's my understanding that I should see results from the Mona Lisa therapy after the first session, and that three sessions is considered optimal for most people. According to their site, that should last me for 12 to 18 months. 
    I hear you about the financial strain. Even at these prices it is still expensive but I'm factoring in the costs associated with not having it, including the emotional costs. 
  • positive3negativepositive3negative Member Posts: 314
    PS: I bought my last batch of Sylk at the Chemist's Warehouse about 6 months ago when it was on special.
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