Vaginal atrophy. Why didn't someone warn me?

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Comments

  • Harlee
    Harlee Member Posts: 106 ✭
    Is 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.

  • Romla
    Romla Member Posts: 2,092 ✭
    Am so glad you girls are here and practical problems with possible solutions can be discussed without embarrassment - thankyou
  • Nadi
    Nadi Member Posts: 619 ✭
    In 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. 
  • Vallerina
    Vallerina Member Posts: 183 ✭
    Hi 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
  • Romla
    Romla Member Posts: 2,092 ✭
    @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.   
  • Romla
    Romla Member Posts: 2,092 ✭
    There is a caution not recommended for ladies who have er+ breast cancer as well as contraindications with Tamoxifen and some chemotherapy drugs
  • Vallerina
    Vallerina Member Posts: 183 ✭
    Gosh 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
  • Romla
    Romla Member Posts: 2,092 ✭
    @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
  • Vallerina
    Vallerina Member Posts: 183 ✭
    Thanks 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
  • positive3negative
    positive3negative Member Posts: 323 ✭
    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. 



  • positive3negative
    positive3negative Member Posts: 323 ✭
    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.



  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    Thanks @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)
  • Romla
    Romla Member Posts: 2,092 ✭
    It'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
  • Vallerina
    Vallerina Member Posts: 183 ✭
    Thanks @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.

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