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
- VallerinaMemberThanks @Romla. I emailed YWCA months ago about joining in that hydrotherapy group as swimming is totally my thing. I never even got a reply from them so I assumed the program wasnt running anymore. Will have to follow that up. Louise, The breast nurse at Sunshine Coast was fabulous when I was there, I think I will contact her tomorrow and try to reconnect with her. She will know about ti. Ironically I never met her but we had a few phone conversations. Yes you are definitely right I havent had an anchor. As for other ladies, I havent even told my best friends about what Ive been through. I have talked to 2 ladies in my area that I knew had bc. One was kind but didnt want to talk about bc she was trying to move on from it I guess. The other was kind but I dont know her that well. Ive seen her since and she didnt ask how Im going. I guess everyone has to deal with it their own way. I got invited to Look Good Feel Better but I didnt go as I still look exactly the same as before bc until I take off my top and I dont have issues with my looks and didnt want to take the spot from someone that needed it more. Sorry but I am a bit freaked out and scared of facing the reality of the more serious stages of bc in support groups. There is a stand up paddle board group for bc ladies in my area and I intend to start going to that as soon as the water warms up. I know Im going to fall in as Ive never tried it. I only had exchange surgery in July so Im still healing, muscle is just feeling good just this last week or so so Ill be right in time for summer. I have a heavy 625 cc silicon implant so Im giving it extra time to heal. I have a wonderful partner so I do have support. Thanks for your understanding.
Vallerina. - RomlaMemberIt's ok @Vallerina there's no such thing as hijacking the thread you needed support end of story.I met by phone thru the Cancer Council a wonderful Irish woman from the Sunshine Coast who'd been same bc journey as me.It was thru the Cancer Connect program -just spoke to her last week again might be worthwhile seeing if you can catch up with her as she probably knows the local set up well.- she volunteers for the Cancer Council had bc years ago . Also as well as bcna online blog might help you to have connections locally with fellow Sunshine Coast bc ladies - I found a local voice helps.YWCA runs in Sunshine Coast a free hydrotherapy program called Encore for 8 weeks x2 hours - it might provide opportunity to meet others in same boat who understand the local scene re bc. I'm going to it down here in October - I also googled local support groups here and met some wonderful women in my own area at various stages in bc journey.Might be time to find a medico to stay with you on this journey but ask around to find the right one - think part of your issue is lack of an "anchor" medical/ other bc ladies
- ZoffielMemberThanks @positive3negative That means I don't have to tell the old bloke that I'm going to numb his old fella. (must surely work both ways)
- And most importantly:Re XYLOCAINE
"Carcinogenic and Mutagenic Potential
Genotoxicity tests with lignocaine are inconclusive. In genotoxicity studies, a metabolite of lignocaine, 2,6 xylidine, showed evidence of activity in some tests but not in other tests. This metabolite has been shown to have carcinogenic potential (nasal and subcutaneous tumours) in preclinical toxicological studies evaluating chronic exposure. "
I appreciate that it's possible to be too cautious, but I'm inclined to avoid anything with carcinogenic potential if there's an alternative.
- Some warnings about Xylocaine:
Warning:
Excessive dosage, or short intervals between doses, can result in high levels of lignocaine or its metabolites and serious adverse effects. Patients should be instructed to strictly adhere to the recommended dosage and administration guidelines (the management of serious adverse reactions may require the use of resuscitative equipment, oxygen and other resuscitative drugs).
The lowest dose that results in effective anaesthesia should be used to avoid high plasma levels and serious adverse effects. Tolerance to elevated blood levels varies with the status of the patient.
Dose reduction
Debilitated, elderly and/or acutely ill patients and children should be given reduced doses commensurate with their age and physical status.
Excessive absorption
Absorption from wound surfaces and mucous membranes is relatively high, especially in the bronchial tree. Because of the possibility of significant systemic absorption, Xylocaine Jelly should be used with caution in patients with traumatised mucosa and/or sepsis in the region of the proposed application.
If the dose or site of administration is likely to result in high blood levels, lignocaine, in common with other local anaesthetics, should be used with caution in patients with epilepsy, impaired cardiac conduction, bradycardia, impaired hepatic function, severe shock and patients with severe renal dysfunction.
- VallerinaMemberThanks romla. I actually am a patient at royal brisbane and womens hospital the leading womens hospital in qld. Im a public patient and received fabulous care from wonderful breast & plastic surgeons up till i had the mx and got the all clear.since then im obviously lower priority since lucky for me the cancer hadnt spread. I understand that. I never met with an oncologist but full team is there if deemed necessary. Not necessary in my case. I live on the sunshine coast it takes me over 2 hours to get in to briz. My last appt one week after exchange surgery i got up at 5 and got the train in then walked up to the hospital. At 12 pm i was one of the last still sitting in the waiting room when my surgeon rushed past in scrubs heading for the lifts. I asked him oh are u going and he looked at me like hed seen a ghost.he hadnt even known i was there. I started my journey at breastscreen and had 7 appointments there. From there to our sunshine coast hospital where i was just getting to know them when my plan changed from lx to mx after mri i requested. Local hospital didnt do immediate recon so they sent me on to brisbane i was just getting to know the nurses there when i became more a plastics patient. So i dont have any one thats been along the whole trip with me.this gp is new too. I have the my journey kit. Ive always asked lots of questions its just the answers have been a bit general. Anyway sorry to hijack the thread. I really was interested in this subject but have gone off track. Cheers v
- RomlaMember@Vallerina Phew where to start.I too have had aregular mammogram since 40 and am 63.I went thru menopause first time at 40 and was on HRT. I seem to remember there were other natural products ladies used at the time with success for hot flushes BUT I would not use them unless you checked the site I gave you eg Promensil ( which I think is red clover ?)wild yam cream .My immediate advice to you is to keep good written records of all that has happened and find a good oncologist.Also get the bcna My Journey Kit and read it carefully esp useful for questions you can ask the medical staff about your treatment/ health - as scarey as it is you might need to be more proactive about your healthcare.In SA where I live BreastScreenSA once you are diagnosed will no longer see you for 5 years as your care is handed over to oncologists who provide treatment and monitor your health .I am not medical but I think you need more experienced support than just your gp - my gp is great for back up but my oncologist is the one I go to when worried
- VallerinaMemberGosh thanks @Romla. I specifically asked gp what to take thats safe for me. This is a new gp i ditched the old one after she prescribed an hrt only for women past menopause. I took it for 2 years then found out i shouldnt been on it in the first place. Specially since my mum took des while pregnant with me. I never had an oncologist ibecause all my cancer got taken in the mx and i had no chemo or rads. Then i feel i was ditched a bit because i had immediate recon i became a plastic surgery patient the breast clinic sort of acted like theyd passed me over. My cancer was gone so they dont seem interested in me any more. I get that. I am one of the lucky ones. I was er+ 85% pr- but no form of hormone therapy was ever offered or discussrd. When i asked why no tamox they said 'because you dont need it' and that was it. Im pretty nervous about the other side. I had a 7cm long area of high grade dcis that filled half my breast that couldnt be felt or seen on mammo or utrasound except 2 small clusters of cacifications. I had been having regular mammo since i was 40. Its very scary. I will go off the remifemin then and do some more research. Thank you for taking the time to let me know. :-) v
- RomlaMemberThere is a caution not recommended for ladies who have er+ breast cancer as well as contraindications with Tamoxifen and some chemotherapy drugs
- RomlaMember@Vallerina I used Remifemin tablets when going thru menopause years ago and found them very helpful with hot flushes. However think might be wise to read Memorial Sloan Kettering site about black cohosh as I recall is a caution for breast cancer patients because of oestrogenic effect - maybe a chat with oncologist might be an idea too.
www.mskcc.org/cancer-care/patient-education/herbal- remedies- and-treatment.