Forum Discussion
positive3negati
9 years agoMember
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
70 Replies
- VallerinaMemberHi ladies
Thanks+3- for starting this thread. This topic is really important.i had a right mx in march then single silicone implant in july waiting for nipple recon now and i have noticed a few weird hormonal things. I didnt need rads or chemo as i had huge dcis but my nodes were clear . Yay. Never thought losing a boob makes me lucky but i hav learned so much i wish i never knew.
I was already in a natural perimenopause for a few years when i was diagnosed and i had already stopped taking oral hrt & was only on the pessaries. After dx i stopped all hormone therapy. The first weird thing was the really strong underarm b.o i suddenly started getting. I hadnt needed deodorant for over 15 years but straight after my mx it was suddenly overpowering and still is. Also I hav never in my life had much vaginal odors but since my first surgery i suddenly understand the fish analogies i hav always heard and this continues. Its Not an infection seems like some sort of hormonal reaction to the mx.
Im er + but never offered tamox ?? but i hav found my hot flushes that had begun to settle down, are now out of control -laying boiling with no covers in the middle of winter, hot then cold up to 20 times a night. Laying for hours exhausted but unable to get back to sleep made worse by having to wear 2 bras and sleep on my back and not change position because my 620 cc implant is quite large and heavy and im not quite confident in it staying put yet. My gp said it is safe for me to take remifemin black cohosh tablets twice a day and ive been on it about 3 weeks now- it seems to be helping with the hot flushes. It has no estrogen so it could be worth checking if its safe for some of you. The toilet paper thing i had noticed but just thought it was declining paper quality. Uh oh no apparently its me :'(
We found quilton brand dunny paper stays together and isnt super expensive. As for the lubes i find vagisil quite good for day to day use. I am lucky enough to be feeling very well and the physical side of our relationship has been very important to both of us. I have found that i also grieve my nipple and i think my natural intact boob is greiving too as it seems to have gone dead and lifeless even tho it hasnt been touched by the surgeon. I find to lessen some sexual anxiety regarding incontinence etc we hav started having a lot of sex in the shower. We use lots of mild hair conditioner as a lubricant and then wash it all off after. Is cheap and Hasnt caused any (unwanted) reactions lol . I have to push myself at times to keep sex going. I showed my partner my scars straight away and he has been amazing. I know the atrophy problems arent all about sex and its a low priority in some cases but for me that would be the biggest loss and is important.
Cheers v - NadiMemberIn my opinion all ladies with vaginal atrophy/dryness need treatment in order to reduce the chances of recurrent and persistent UTIs in future. Don't wait until you start getting UTIs, take care of your 'garden' before hand. Xylocaine is like KY but has an anaesthetic it in. It is for internal use, is bought over the counter at the chemist and does wonders to take away any pain associated with vagina atrophy/dryness. PjurMed Premium Glide lubricant is Made in Germany and is especially formulated for women going through menopause whether from chemotherapy or naturally. It is the most superior product on the market much better than 'Yes' or 'Sylk' and is supported by the McGrath Breast Cancer Foundation. It is not messy or sticky, feels completely natural and a little (a few drops) goes a long way. You can order it online from their website and is available through Chemist Warehouse online store. See https://au.pjurmed.com/ ;
I also use the estrogen pessaries only because I was ER negative and they are wonderful. - RomlaMemberAm so glad you girls are here and practical problems with possible solutions can be discussed without embarrassment - thankyou
- HarleeMemberIs Sylk still available? I thought it had been discontinued because it wasn't 100% natural as per it's labeling or something like that? I really liked it and while 100% natural would be nice anything (as long as it doesn't give me cancer!!) is better than nothing.
I've been using the Yes products and I find them too liquid which means most of it runs down my legs - charming and quite a waste of this expensive gunk. - HITMemberOh please advise away. Who would of thought that the dryness could cause so many problems... If it would of happened to me I would of taken ages to connect the dots. You have to know before you can help yourself!! I don't have that problem (never I hope) I am dryer than before but not bad. I do have stress incontinence that is becoming a bit more than just stress, allways wear pads now but opting for thicker ones. Can tighten myself most of the time, except when driving .. just not in the right position?? Interesting about the neuropathy, hadn't thought that it would affect more than hands / feet. my libido is pretty dead - sex is nice now, but just nice... I have been itchy lately and when I go to the loo and wipe myself, the wipe has ended up to be a scratch ... naughty naughty - the short term good feeling ends up long term bit sore. You'd think I'd learn. But just then I went to loo and thought I found a funny lump down there, after another feel the lump fell off!! It was a bit of toilet paper that must of lodged when I had my last itch ... and I hadn't even felt it?? Oh boy
- PS: I bought my last batch of Sylk at the Chemist's Warehouse about 6 months ago when it was on special.
- 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.
- mum2jjMemberHiya @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 - primekMemberThe 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.
- 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: