Let's have another conversation about vaginas

Following on from my last post, today was my first appointment with the gynaecologist to discuss vaginal atrophy. By a happy coincidence, it turns out that Dr Metawa is one of the two doctors that introduced the Mona Lisa touch therapy to Australia. He tells me that when he first started offering it, he contacted many of the cancer groups. It is his view that this treatment should be offered a a routine part of cancer treatment where menopausal symptoms are often induced. He shakes his head and tells me that they were skeptical and didn’t believe the therapy would work.

Since then it has become more broadly available and the cost has come down, but it is still too expensive for many people. I tell him my story, about my GP telling me I had vaginal atrophy and not bothering to let me know about laser therapy. “It’s cultural,” he replies in his clearly not-Australian-born accent. “In Australia there is a great reluctance to talk about vaginal health.”

Why is this? The doctor explains that vaginal atrophy results in the slow collapse of the vagina, often leaving women with symptoms of urinary incontinence, higher risk of urinary tract infections, higher incidence of prolapse (where inside bits become outside bits), and in some cases, irritation or pain so sever that patients have trouble walking. But we’re Australian, so let’s not talk about vaginas.

Then, of course, there’s intercourse, which we also don’t like talking about unless we’re using it as an analogy for something being broken. We have not trouble at all saying something is ‘fucked’ but we cringe at any conversation about actual intercourse and whether or not it’s still comfortable. I know, I’m generalising here and those of us from backgrounds like nursing or policing sex crimes are much less squeamish. Even so, I cannot recall ever having a single conversation with a girlfriend about our vaginas.

Dr Metawa thinks that discomfort during intercourse is the least significant issue when it comes to vaginal atrophy. He’s not diminishing the importance of my sex life. He says this in a way that means “There are so many other terrible things that come with vaginal atrophy that this is way down the list.”

The doctor ushers me into his examination suite and gives me some privacy while I take off everything below the waist. He returns after knocking, and asks me to put my legs up into the stirrups. He tells me that I’ll be able to follow the examination on the television screen attached to the chair, if I wish. Sure. Why not? Let’s have a good look at vaginal atrophy.

He turns on the camera and tells me that, of course, the image of my vagina is magnified. “Oh that’s good news,” I respond, “Or I’m in real trouble!” He chuckles like he’s never heard this one before and I decide I like him. Next up, vivid colour images of my vagina. (I can’t help noticing I’ve got a grey hair) and  the good doctor confirms that I have advanced vaginal atrophy. He explains that the vaginal birth of my daughter, twenty four years ago, stretched the skin and that’s why it has taken so long after chemotherapy for the atrophy to become apparent. If I’d had a caesarean birth, or never had children, it would have turned up sooner.

Dr Metawa advised me that I am a good candidate for the Mona Lisa Touch Therapy. He’s pleased that I’m not on any anti-oestrogen medication as this can make atrophy much worse, and treatment not as straight forward. He still treats women on anti-oestrogen medication so if you are in that category it is still worth seeing someone about this treatment.

I’m booked in for my first session on Friday. I’ve been warned that this one can be uncomfortable, and even painful, because the vagina is dry and the walls are thin. The good news is it will be all uphill from here, with little or no discomfort for my second and third treatments over the next couple of months. Once the three treatment are completed, the doctor will assess the condition of my vagina to determine if tone has been restored. I may need one more treatment. I am told I can expect a full recovery from the atrophy. I will not need to use any lubricant, inside or outside my vagina and I can also expect the associated incontinence issues to resolve.

Once we achieve OV (my abbreviation for ‘optimal vagina) I’ll have a followup at three months and then another at six months. After that, I’m told it’s best to just monitor vaginal tone and to book in for a top up as needed. “Better to have one treatment sooner than several later.” This seems like good advice. Some people only need one top up a year and others need two or three. Vaginas are all different.

There’s no doubt that this is a significant investment. I think it’s entirely worth it, particularly as I now know that without it I can expect “full collapse” of my vagina. I’ll post again after my first session on Friday.

Thanks to everyone that left feedback on this. It's clearly an issue of significance for a lot of women. It's my thinking that if breast reconstruction is covered by Medicare then treating vaginal atrophy should be too. Both of these things are important options for women recovering from breast cancer.

Meg X

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Comments

  • positive3negativepositive3negative Member Posts: 314
    Sorry. I meant to edit the 'f' word with symbols or something. Apologies to anyone that finds it offensive. 
  • ZoffielZoffiel Member Posts: 728
    Ah, there's the catch. The bit about being on anti oestrogens. Damn. Let us know how it works out for you.

    From here on ***Warning, some concepts may offend***

    I've been reading/researching a bit since my previously trusty vagina has decided to go into early retirement. I've also talked to a number of medicos and my post menopausal friends about how they manage. Interesting that none of them have mentioned any sort of prolapse and that aspect hasn't come up much in the stuff I've been reading. I'd be a bit concerned about that being over represented by a commercial provider, but I admit to being a cynical old trout.

    One thing that has come up (pardon the pun) is that orgasms are beneficial for women with vaginal atrophy because they do a sterling job of both increasing blood flow and tightening muscles that help keep your insides where they should be. Considering that you don't need either a partner or penetrative sex to have one, maybe that is something that we should be thinking, and talking, about.

    My shrink specialises in sexulality and cancer--which sometimes makes me want to put my fingers in my ears and chant 'lalala'--and she's all over this. I've had talks with her about why offering a vibrator ( not a dildo, Google the difference if you are not  a sure) in a care pack for menopausal women is, or is not, a good idea. 'Not' from my perspective because I think it would be confronting for some and could get a few groups very aerated , but hey, she's the expert. Though a free... Never mInd.  I suspect she's  writing a paper about it.
  • AfraserAfraser MelbourneMember Posts: 746
    All a bit alarming. I am comforted by the fact that my atrophy doesn't seem to be causing any other problems and an ultrasound says everything is as it should be and where it should be. So we'll keep up the orgasms and pelvic floor exercises!! 
  • primekprimek Broken HillMember Posts: 2,788
    Well if nothing it improves your mood. I so hope you find the treatment successful. If it rejuvenates a face why not the box I say. I looked into it when I first finished chemo and started anti hormone therapy as I couldn't even stand wiping myself sometimes. (And I I was seriously annoyed about the loo paper too but just thought it was because I was too fat) But...luckily so far my body has somehow adjusted...it's not brilliant but only need lube when visitors arrive. 

    I look forward to hearing your progress on saving the box.  (Sorry about the fundraising pun...but it does fit) Kath. 
  • mum2jjmum2jj Member Posts: 2,858
    I am following with interest. Can I ask if it is a new thing that it is claimable as when I looked into it it was not?  Maybe a question for your gyne. Could you also ask the good dr if a gyne needs to use special item codes etc. Also I have heard that it depends who does it. You are fortunate to be going to a guru. There is one gyne in Cairns who is qualified, but unsure of costs. One of the ladies in the LLL group said her results didn't 
    last, another didn't like the pain. I think if it's a short term cost with success then may be worth saving for. I do still have guilt about how much this disease has cost my family, and fear it may be out of reach for the time being, but will watch with interest to see how you go. 
    Paula x
  • NadiNadi Member Posts: 505
    I know my husband would pay anything if it meant my lady garden was in bloom again. I am a little dismayed that this treatment has never been discussed with me. Or that regular a trip to the gyno after chemo isn't suggested. 
  • DeanneDeanne Sunshine Coast QldMember Posts: 1,811
    edited September 4
    After reading about this treatment on this network (we are so fortunate to have this place to share our issues and possible solutions), I found a gynaecologist who performs this procedure and decided to give it a try. I had had no problems until I changed from Tamoxifen to Femara. But Femara seemed to be the cause of it for me. I have been on Femara for almost 2 years now. Sex became painful and then physically impossible after about 6 months on this medication.

    The treatment is terribly expensive. I paid $1800 for 3 treatments. There is no rebate from Medicare. 

    My feedback? It is definitely not painfree! While you do feel nothing during the actual procedure, I found for me, that I had a burning pain (like the pain from a UTI) for up to 3 hours after the treatment. You need to sit on an ice pack to relieve it.

    It improved things but as I am on Femara maybe my results are not as good as would be possible if I was not on it. At the three months past the last treatment mark (when things should be at their best) I was still experiencing painful sex. It was decided to try 2 more treatments as there had definitely been improvement but maybe more was possible. These treatments were at a 'reduced' price of $450 each. I try not to add up what this has cost but dam it I am only 51 and thought I had years before facing these sorts of issues!

    I still have not reached the next 3 month past the last treatment mark but sex is definitely much more enjoyable (and physically possible again!). I still need to use a lubricant. I use the Yes products and find the oil based one good for this.

    So, overall, I do think it works, even for someone on anti-estrogen therapy. But I think the cost is something that is a big problem. It is disappointing that there is no Medicare rebate and hope that this may change as results support its validation as a medical procedure that improves the health of women facing these issues. 
  • positive3negativepositive3negative Member Posts: 314
    Hi everyone, and thanks for all the great comments. Here's some responses:
    Zoffiel, you might recall I mentioned orgasm as beneficial in my previous post on this subject. What I haven't mentioned yet is the atrophy causes the shrinking of your clitoris (IKR! It just keeps getting better and better!). I was shocked when I saw mine on the big screen, or rather, didn't see it because it's now retreated. So yes, orgasm will definitely help but it's going to get harder to have one if clitoral stimulation is your preference, and of course, we all know penetration has become an issue! I'm also a confirmed skeptic and I shared your concern about over-selling, which is why I've double checked everything against the actual research. I suspect prolapse is also on the do-not-discuss list for a lot of women. The one woman I know that experienced it is now very annoyed that laser treatment wasn't discussed with her and is now making her own enquiries about it. I suppose the only way of knowing if prolapse is going to be an issue for me is to wait and see if that happens. Personally I'd rather act to reduce any risk of it. My friend's description was enough!
    Mum2jj and Deanne, YES it is now claimable on medicare but you only get about $70 back for each visit. My first consult with the doctor cost $200 and I got a $72.75 rebate. I'll report exact costs on the treatments as I have them, but I've certainly been quoted a lot less than you paid, Deanne! 
    Also in relation to how long the results last, I've been told that this varies and that most women need one or two 'top ups' each year to maintain the results. 
    Deanne, I plan on contacting my private health insurer about this too, as I think it should be covered, but it seems just about everything I've had done wasn't so I don't hold out much hope. I agree with you that it should definitely be provided as part of our recovery. 

  • AlpalAlpal Member Posts: 150
    Hi Meg.  I had my first treatment with Dr Metawa a couple of weeks ago.  It was uncomfortable but I reckon the end will justify the means!  I speak with a lot of women for whom vaginal atrophy is a problem and yet it's such an undiscussed issue.  To think there is a relatively risk-free solution that is not widely publicised or funded seems ridiculous.   There is a partial Medicare rebate for the procedure/s and a huge rebate if you've reached the Medicare Safety Net which certainly helps.  Thanks for bringing it up as a discussion topic :) 



  • positive3negativepositive3negative Member Posts: 314
    Hi Alpal. Thanks so much for sharing your experience. Deanne was commenting that she needed ice packs for about three hours after treatment. Has that been the same for you? Also, are you prepared to share information on what you paid and how much rebate you received.
    Thanks for the tip about having it done while you're under the safety net provisions! I think just about everyone exceeds those during treatment and it's worth keeping in mind.

  • DeanneDeanne Sunshine Coast QldMember Posts: 1,811
    edited September 5
    Hi Meg
    It is puzzling that you and Alpal are saying that there is a partial Medicare rebate. There is definitely no rebate for the  Mona Lisa treatment or no cover privately where I have had treatment. My last treatment was only 8 weeks ago. The only rebate I have received is a normal consultation rebate with the gynaecologist for the initial consultation. 

    I will ask about this when I go back for my 3 month check next month. It would be good if I can get something back for future maintenance treatments. Thanks for sharing all this info. I hope that you experience success from your treatments.


  • mum2jjmum2jj Member Posts: 2,858
    I just had a thought. I seem to remember discusssion as to the expense of the equipment and training needed for the drs performing it is factored into the price Drs charge for it. I guess they need to cover their initial outlay. It is soooo wrong that something with potential for such good results is out of most of our reaches. 
    I seem to remember BCNA policy team looking into this but am not sure if it's this or the YES products. When I have time I will try and scroll through the LLL posts. @DaisyMarigold or @suzieq, can either of you remember. Paula xx
  • DeanneDeanne Sunshine Coast QldMember Posts: 1,811
    Thanks @mum2jj. The price I paid was actually cheaper than what some of the other gynaecologists in Brisbane and other areas charge. $750 per treatment or $2000 upfront for 3 treatments is what some are charging. Maybe as this treatment becomes more widely available the natural forces of supply and demand will result in more competitive pricing. But it seems wrong that this is the case for something medical.

    I understand that doctors need to try and cover their initial outlay of equipment and training etc and so many will need to charge a higher fee to try and recover this, particularly at first. However I do not understand how some of us are getting a Medicare rebate when I was told that there is none, that there is no item number for Mona Lisa Touch treatment? I really hope that Medicare are now giving some rebate when I return next month for my check up.

  • iserbrowniserbrown Member Posts: 1,436
    Hi!  I've been searching around and it would appear that it is not covered by Medicare.  Some sites offer a discount if it is cancer related.  This is what I found.  Assuming the site information is up to date!

    "...provides a 10% discount to patients whose symptoms are secondary to a preventative cancer treatment (such as bilateral-oophorectomy) or due to any cancer-related surgery, therapy or medications.

    Medicare or private health insurance does not currently cover the MonaLisa Touch treatment..."

  • suzieqsuzieq Member Posts: 314
    Any co2 procedure is expensive.  Mona Lisa Touch is no different.  It is the same principle as any co2 laser eg: facial resurfacing which, when carried out by a Dermatologist costs around $5000 so in perspective is not expensive. I believe Medicare should rebate some of the cost as it is a consequence of cancer treatment (Aramatose Inhibitors) and if rebate available more women would complete their cancer treatments as vaginal atrophy is one of the worst side effects women find hardest to live with.  

    A Gynecologist needs to perform MLT.  There are more experienced in the procedure than others so ask questions and do your homework if you want to go ahead with it. I have posted extensively on my experience with Mona Lisa Touch and that information would be available somewhere on this site.  Apart from that there is extensive information of personal experiences of others who have undergone the MLT refer this site:  https://www.realself.com/monalisa-touch.  Its a blog site where women undergoing cosmetic procedures tells their story.  Last time I looked at it there were over 60 women who blogged about the procedure.  It had about a 97% sucess rate but what you need to look for is women who blogged after initial success -  in other words how long did it last?

    The MLT is painless and takes about 5 mins.  It worked great for me but did not last long and the cost of having to repeat the procedure annually, albeit only one , not three, was not viable financially. I still had to use lubricants for sex but I could at least have sex.  Unfortunately, it did not last long because the reasons vaginal atrophy existed in the first place was still there ie lack of estrogen even after I stopped Aramatose Inhibitors so of course needs to be repeated.  There isn't a moisturiser or lubricant in existence that can replace the role of hormones but they certainly help and I suggest, until you decide what path you are going to take that you use daily moisturiser but use ORGANIC like Yes products see site: https://www.yesyesyes.org/ These are best products on the market and I and others on this site buy direct on this site.  Products available on the chemist shelves here are not organic and you can only use them every 3 days or so - just not good enough.  I also suggest you use vaginal dilators - quick and simple - takes a few minutes a day.  The use of daily moisturiser and dilators will help, but generally not solve, atrophy.

    I am now 5 years post breast cancer and on low dose vaginal estrogen pessaries and use compounded progesterone cream.  This is NOT a suggestion for anyone else.  Instead I would like to point out, the last time I saw my doctor (couple weeks ago) she said "great news on latest research results on DHEA for vaginal atrophy".  As I was happy with what I was doing I didn't have that conversation with her but might revisit it when I go back and ask what she was talking about.  DHEA is widely used in the States and elsewhere for women with breast cancer who suffer vaginal atrophy.  It is available on script and comes in pessaries and acts as estrogen does.  While DHEA can turn into estrogen in the body persistent evidence suggests it does NOT when used vaginally but acts the same bringing tissues back to normal.  It is not available in the pessary form in Australia (we don't have enough agitators here and our market not large enough for a drug company to go through the hoops here). You would have to get prescription from your doctor and take to your local COMPOUNDING chemist.  You need to do your own research on this, talk to your own doctor (if they know about it) but evidence is it is safe and it works.   Good luck ladies
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