Bump, as this topic’s mentioned again and this thread might be interesting reading.
After reading all your posts I just wanted to add that I read that testosterone can help with libido, whether its safe with e+ bc I am not sure but will be asking at next onc app.
Having just finished 6 x tax for secondary bc and dreading going back on zoladex and tablets as now in new relationship!!
We went to the our new doctor’s surgery after moving house and each had an appt with practice nursie.
I mentioned that chemo had caused the problems outlined in earlier posts and mentioned that I’d heard about Replens. She told me that I can buy it in Tesco.
That was it for “advice”, not even a script. Is it available in a script? That would save me money.
Was there a further thread that mentioned other lubes? What’s the advantage of Replens over (say) KY?
Yes they can prescribe it.
Ninja - if you look on the Replens website that explains it well. It is not a lubricant for during sex so much as a treatment to re-lubricate. I used it for about a month and found a great improvement - the horrid itching and sorness went. Had a couple of occurances over the last year otherwise have not had to use it for at least 8 months. I buy mine from amazon in the reusable tube (did not like the individual applicators) but have heard other ladies get it on prescription. Good luck. Marli
Some GPs will give a prescription for Replens, but mines wouldn’t because I was already using it when I was on chemo - never mind the fact I was skint as I wasn’t getting any benefits and I was living on savings!
There is a fairly new product called “Yes” from the States which is recommended for intimacy. You have to buy it online (I saw it advertised in Amoena magazine). For about £10 you can buy a range of different types of trial size samples. They come packed in a lovely little gossamer drawstring bag with silver stars on it, so it looks very discrete. It’s advertised on their site as being the closest to the body’s natural vaginal lubrication. I’d recommend giving it a try.
hi, i can recommend “yes”. i like it because it is completely natural and organic. you can oil based and water based ones. its not sticky in anyway and really does the trick so to say! sadly a bit pricey but have a look at the site “yes yes yes” (not discreet!) and there are loads of testimonials out there.
I can vouch for Replens. I have a good GP who prescribed and I now get it on repeat prescription. What a difference to have it acknowledged as a real problem with a real solution. Much better than KY and as someone else says explained well on the website. J.
Been meaning to get some of this. Am off to Amazon to order some, OH - gird your loins!! Well maybe not right away…
Better still, get your GP to prescribe it, then you won’t have to pay for it!
And who wants to pay for it? lol
Dx
Bumping up
Hi Girls
Just wanted to revive this thread!
I have had 2 x local recurrences and 2 years ago had a surgical hysterectomy and ooperectomy: Topped with arimadex, I’ve been in a worstening post menopausal state ever since.
I am experiencing anything from 20 to 40 hot flashes a day and severe vaginal atrophy. I couldn’t even contemplate sex (2 x years since…). Replens is really painful to use and my skin splits all the time. My bladder muscles have weakened and I have constant UTi’s etc…, etc.
I have a 50/50 chance of mets yet I have begged my GP for HRT! Having read everything I can on the subject I am amazed how little is being done to help women who suffer from this and can’t take HRT. Everything I have read is conflicting and the real truth is that because we women don’t report this because of embarrassment (80% don’t) - there has been very little research or clinical trials?
My GP says he cannot subscribe without agreement from my onc who says it’s too dangerous, yet in the USA they (the Oncs) give local estrogen creams for the VA as they recognise the importance of vaginal health. I am pushing this and am about to seek legal help through patients association?
I was absolutely mortified going to my GP and having to discuss this problem and even more when he had to do an intimate examination (which cut me) and even more again when my GP said they were discussing my case at the next Onc meeting!! However, they are doctors, we are sufferers and unless more women pluck up the courage and report this, we won’t get the help that’s needed!
Please, I urge you all seek help as the more of us that do the more likely we are to get it and research done!!!
Thanks in anticipation…
Soo glad I found this forum! I’ve had the vaginal problem on and off since I had my son, at age 32. I had no idea what had hit me. Just another side effect of childbirth/pregnancy no-one tells you about… After my daughter’s birth my doctor told me “your vagina looks like a 65 yr old woman’s” I was 38 (who’s got mine? and can I get it back? I asked). Started on HRT at age 47-ish before menopause becuase of sex problem cycle - have sex, get cystitis - does wonders for your libido. Had no BC in the family and no risk factors. It helped but didn’t solve the problem completely.
Came off HRT for 2 yrs, 2005-2007 and nearly went nuts so went back on. DX with BC, grade 2 and ER and HER2 receptive in Sept this year. Had WLE and SNB in Oct and am now on Anastrozole. Menopausal symptoms - hot flushes etc have gone ballistic and that certainly hasn’t helped the sex problem. I’m desperately looking for something that works and isn’t carcinogenic. Tried Sylk but that was a disaster. Before I embark a one woman trial of Replens/Senselle/Yes/Balance Activ etc, I’d like to know if anyone’s got feedback on them.
TBH at this point I’m almost ready to call it a day on the old sex stakes and take up knitting. Unfortunately my husband isn’t…any info/feedback from fellow sufferers would be really helpful.
Monicas
Monica ive recently started using replens and no change as yet rang helpline yesterday and she said stick with it. had been using natural yoghurt up until then with some relief but def wouldn’t want to try sex whilst using it. Might go see my GP to see what she suggests i try.
xxx
Forgot to mention…
Vaginal atrophy doesn’t get better of it’s own accord and in a lot of cases gets worst…
Monica - my troubles were not as prolonged or serious as yours but after treatment finished I was terribly uncomfortable and thought I had constant thrush. Was extremely sore. Did some research and bought some Replens which I used every 3-4 days for about 6 weeks and found that it really helped with the discomfort. Have only had to use it a few times in the last 18 months so I think it is worth a try. You can buy it on Amazon at a good price and I find the re-usable tube the most convenient. Good luck. x
You should be able to get it on prescription from your GP so you shouldn’t need to pay for it.
Ladies, thank you all for your comments. I’m waiting for a free sample of Replens before I start my one-woman review, although I don’t know if I’ll have the heart (or whatever) to work through them all…
By the way, just to complicate things, I’m a cyclist. Although I haven’t been out for a while due to weather, gales, etc. but am hoping to get back in the saddle big time when the weather clears. So, it’s really quite crucial to sort things out Down There in more ways than one! However, I am going to get a new saddle which is advertised as “reducing soft tissue pressure” LOL. All those in favour say Aye. Sorry, was that TMI?
Monica
Hi Girls
Here is a quick update: My brother who is a retired GP confirmed my suspicions that no-one wants to get sued and sure enough the official letter came back from the hospital…NO WAY…too dangerous for me to have either systematic or topical HRT.
I have sent the literature confirming that topical HRT has yet to be shown as increasing recurrence, but they have suggested Replens (tried, but now only works for a few hours and hurts to use) and acupuncture for the flushes, (I’m having my first session today).
I cannot afford acupuncture every week for the rest of my life and anyway that doesn’t help with the worsening VA.
The hospital have also suggested I see a certain women’s expert who only consults privately in another city. My GP says she is a well known and a great lover of progesterone cream? My cancer was oestrogen and progesterone sensitive…however what maddens me, is that if she can suggest this, why can’t my GP or Onc try this on me? CRAZY!!!
SO…I have now asked for a referral to the useless Gynae who failed to warn me about what to expect after my surgical hysterectomy and ooperectomy! The reason I want to see this guy rather than someone else is that I am determined that he gets the message that he HAS to warn women of this problem and look into what can be done for us BC survivors!
The attitude is that we are lucky to be alive, but I personally would rather take my chances and have a “quality” to my life…especially as all the literature that I read is so conflicting!
Whilst Replens (I get on the NHS BTW) may ease the problem, it doesn’t solve the problem and as I mentioned before, in a lot of cases VA just gets worst.
I’m on a mission now…I’ll keep you posted…
N x