vaginal dryness/painful sex
vaginal dryness/painful sex Hello All
I am hoping that someone out there has a) experienced this problem and b) has some suggestions for me! Itās a rather delicate situation so bear with me!
I have been on Tamoxifen since May this year and whilst I had read about vaginal dryness/atrophy I didnāt realise it would happen so soon - and further, it caused so much pain and irritation.
I have been using Replens MD (available on prescription) which has been working - this week however it hasnāt but maybe I need to increase the doseage. Incidentally, have also used Slyk (which stung to high heaven at first, has eased off, but stings somewhat again)
What I need help with is the painful sex and lasting irritation in the vagina/vulva area. My tumour was very strongly oestrogen receptive so I doubt that my surgeon will allow me a topical oestrogen cream (although from what I have read no one can be sure how much - if any - of the oestrogen remains in the location or how much is taken up in the body).
I have an appointment next month with my doctor/practice nurse for an internal and he did say that treatment will need investigating due to my oestrogen status. But until then, has any one suggestions or advice so I can at least discuss during my appointment?
Many thanks all. Morgan xxx
Hi Morgan
This might sound rather strange, but have you thought about doing pelvic floor exercises (you know, the ones you are supposed to do after childbirth)? I didnāt and bore the consequences until I could bear the stress incontinence no longer!
I have been doing these for eight years now, and can honestly say that I no longer have a problem in that department, but an unexpected bonus has been that I have not dried out down below, am on tamoxifen, and saw my last period four years ago at the age of 48.
It takes a lot of dedication, but costs nothing. Might be worth a try.
Mcgle
hi morgan I have this problem too.My breast care nurse advised applying a little ky jelly every day even if not having sex and this does help I to got cream from doctor but the ky helps better.My oncolgist said if I find the side effects from it too much to bear he would look into changing it but I dont really want this as I feel ok apart from that little problem.hope this helps and I really do sympathise with you its awful painful isnt it?Take care debbi x
Ouchā¦ Hi Morgan
I had this problem to,I was on Tamoxifen the vaginal irritation was awful so bad I made myself bleed as for sex no way,I tried replens and ky jelly but it diddnt help to much.
My onc suggested oestrogen cream but I was too scared to try as my tumour was very er+.
I left there thinking I would have to put up with this,however my breast surgeon was more sympathtic and switched me to Zoladex.This has helped a lot but it is still not good.
I do use the replens but I dont like the way the feel.This is the one thing I hate bc for .
I looked in the mirror today and I look older but most of all I miss the special intimate time with my husband.
Maybe someone else may have some good suggestions.
Love
Sarah
me too! Dear all,
I have this problem too and find it very distressing. I also hate the fact is it not really known about so my friends arenāt aware of it and it is a difficult subject to discuss. It seems so cruel as well that the only totally effective treatment would involve oestrogen which would potentially cause the cancer to come back. I hate the fact that sex which is supposed to be a bonding thing is so painful. I want to try because it seems so unfair on my husband not too, but then when we have sex it is so painful I cry and then my husband feels terrible.
Having said that, at my appt last week with my consultant I asked him about using topical oestrogen and he said without hesitation that it would be safe to use because I am on Tamoxifen which should block any unwanted effects of the oestrogen. There was a visiting oncologist in the consultation who was from Melbourne in Australia and she agreed and said she advises it is ok as well. I still havenāt decided whether I will try it or not but at least I have that option -although part of me feels too scared to take anything hormonal at all.
love, Rowena
topical oestrogen cream My oncologist has advised me to use this but on discussing this with my GP who was reluctant to prescribe it - I continue to suffer along with the rest of youā¦ as I am not happy to use the oestrogen cream. I too havenāt had much success with Replens.
Joanx
Vaginal irritation Go and get yourself swabbed!!
I found that I was really sore and discovered that I had Bacterial Vaginosis which took ages to get rid of (three doses of antibiotics which were horrible).
Since Iāve finished the course the pain and discomfort has all but gone so you might be suffering from the same thing.
Best wishes
Anne
Irrigation! Just to say Iām on Tamoxifen and Zoladex and am another empathiser. I think we must use a range of counter-actions. Replens is cheaper on prescription- not much, but a bit, and it does work to moisturise gradually so itās not a lubricant as such . More help is needed for intimate moments! The KY jelly tip is good. Thanks.
I was prescribed oestrogen cream too and was assured that so little/none enters the bloodstream that itās safe to use. The accompanying leaflet, however, describes it as HRT with all the warnings so no wonder we feel reluctant. Itās as if we might be holding the door open, just a chink! I did read about a supplement in a newish book called Your Change Your Choice . I think itās Buckthorn 7 but Iād need to look it up again to be sure. Iām sure a patient partner is another great help. When I was first diagnosed a neighbour, a fifty-something post menopausal lady living with her lover, said ,ā There are other ways to skin a catā¦ā when I confided my fears to her. Iāve tried to bear that in mind!
Good Luck
Kitty
A young friend of mine suggested Astroglide as I am just post chemo. Have not tried it yet.
Vaseline. ā¦ an old favourite, I find it works for me far better than KY Jelly.
Painful Sex - Thank you for your replies Thank you lovely ladies for your helpful replies!!
Itās rotten isnāt it - got through breast cancer, now we are left wtih the ravages of tamoxifen. I feel 90 years old, with a 100 year old vagina now. I want to try for a baby in 18 months time, but do fear about the pain and the state my vagina will be in by that time!
Rowenaās right about friends not knowing - it just sounds kind of embarrasing thing to discuss as they are all so far from the menopause. Similarily, if you put the problem into google you just get loads of information about menopause symptoms of dryness.
I will def get a swap when I have my internal next month - I did have a swab for thrush in the summer as the itching was driving me up he wall - the doctor said I was well lubricated so he def suspected thrush - my dismay when I got the results (itās not often you are disappointed not to have thrush!!)
Rowena - think I will discuss topical oestrogen with my consultant to see what he thinks before I make any decision on this.
Iāll also try the pelvic floor exercises too.
I will give you an update next month when I have had my next 3-monthly check-up.
Anyway, keep smiling
Love to all, Morgan xxx
Painful sex/dry vagina I have completed 5 years on tamofen, and now on letrozole, I experienced pain/dryness/soreness/atrophy. I told the doctors at the Marsden and I was percribed āVagifemā pesseries which is a topical form of HRT. WONDERFUL RELIEF, my tumour was estogen positive, grade 3 with Lymph node involvement.
I have had no recurrance from taking this treatment. however now I am on letrozole, I am forbidden to use āvagifemā as letrozle works in a different way to tamoxifen, it would appear that tamoxifem counteracts the effect of āvagifemā So it was fine for me to take at the time. But now I am on Letrozole I have tried replens/sylk/astroglide/ky jelly/vaseline, you name it I have tried it!
For this delicate area/subject, it would appear that you canāt use soap not even baby soap, just plain water, pat dry and go without knickers for a few hours a day plus drink lots of water to keep urine dilute, so it does not sting. and now I use replens/sylk.
All I know is that if I were a āhookerā my street walking days would be long overdue!!!
Love bunty x
SYLK Hi Girls
Had same problems since starting Arimidex. Used KY and Replens at first , but have just found this brilliant product called SYLK (more info on 08709506004). It is completely plant based, so no hormones and is absolutely great. It sort of works for a while after and just keeps the vagina smoother and a bit more lubricated. Would recommend that you give it a try - it costs ĆāĆĀ£9.95 per bottle, but once you are a customer they will give you 3 for the price of 2 bottles and it does last ages.
Birgit
Replens AND Sylk My GP prescribes Replens for me, and I bought Sylk via mail=order, I find that the two together help. The Replens is supposed to give an on-going lubrication as it encourages the natural juices of the vagina to get going more, and the Sylk gives immediate lubrication.
I did notice the difference when I forgot to āReplensā for about 10 days due to family visiting (you are meant to use it every 3 days irrespective of whether you have sex or not) and, when I did have sex, it was SO painful - I nearly shot through the roof!! (and it was NOT through pleasure!!!)
I find it painful anyway, with even a small amount of penetration, and Iāve had tests to determine there is nothing wrong ādown belowā , it seems to be just another side effect of this blasted disease - and one that is not generally talked about as it is such a personal issue.
Granmum
Hooker Days Over!! ā¦never!!
Just had to reply to this Bunty as really made me laugh out loud (and with a sore vagina, theres not much to laugh about!)
I have read that Replens also manufactures a cleansing bar to complement their internal ālubricantā - havenāt seen in Boots yet but will contact company direct and see if I can order directly as this seems a good idea to try tool
I have been using Replens with Sylk together, plus KY jelly on a regular basis. Iāve also used milk (organic of course!) and organic aloe vera which are both very soothing. Blasting cool/cold water from the shower also helps and kind of allows me to āitch the scratchā without breaking the skin. Good idea too about not wearing knickers (bit cold now not to!!) and when Iāve been at home have gone without - just likea baby with nappy rash (how appealing and sexy do I feel - NOT!)
Good to say that my pain and unbrearable itchiness at last seem to be abatting (havenāt had sex yet though!) - they are still there but much better than the last two weeks when I was desparate! Typically am seeing the nurse at my GP for an internal so as odd as this sounds hope there is something there for them to have a look at so they can at least prescribe something for when the itching returns (you know how when you are ill and wait weeks for a GP appointment, only for your symptoms to disappear as if by magic just before the due date!)
If I get any other useful feedback from the GP or get a referal to a gynaecologist Iāll report back as could be useful for others.
Love to all, Morgan xxx
Swabbing Iām with Mummybear.
Itās a long time since Iāve last visited these forums but I knew the answer would be here.
I too was having a lot of pain on attempted intercourse. I let it go on for 6-9 months because I thought it was a side effect of Tamoxifen or Zoladex.
Well Zola ended in September and the problem continued so I went to the GP a few weeks ago. I have an overgrowth of Staphiloccocus and have been given two courses of antibiotics.
Iāll be starting a new thread on this.
Clariana
It was thrush!! Dear All
I posted my experiences with extreme pain and vaginal dryness with an itch which was unbelieveable!
Had another swab by my regular GP (who is excellent!) and he said I am sure youāve got thrush despite the last swab you had - and it came back positive last week - and very highly so 3+s! Not often you want a thrush-positive test - he had already started me on antifungal medicine (very strong, capsules taken daily for 3 weeks) and within 2/3 days itching has gone.
Incidentally with the painful sex - have not yet tried sex, but think it might be OK (if I could conjure up some enthusiasm!) - I saw my oncologist who agreed that it is OK to use topical oestrogen for a short time to ease the vaginal atrophy and if I get continued problems they will investigate. There are some clinical data on this too.
Anyway, just pleased to be able to report back something positive that if anyone else is in the same situation donāt sit on it (like I did for months, going scratch-crazy!) see yuo GP and get a swab or two if needs be.
Thanks, Morgan xxx
did it stat on chemo I too have had he painful sex problem - never experienced it in my life before, discomfort 'cos I am quite small but that is overcomeable but not the sheer agony and I havenāt even started on tamoxifen yet and am wondering if anyone else experienced this while they were on chemo - Iām on FEC. I know sex isnāt the be all and end all but it is pretty important and can also be such a healing experience - badly needed when you are bald and skinny and feeling pretty rotten all round. Iām going ot ask my GP next time I see her but all info welcome. Here in Norway the jury seems to be out on use of oestrogen cream or not.
Caro
My periods stopped with the first FEC, Iām now had my 3rd cycle and 1 more to go, followed by rads, 4 x Taxotere then a year of Herceptin.
I too am getting the dry vaginal itch and have been using a little bit of KY on the area. Thing is, itās more inside than out and I find there are days when I could easily scratch myself stupid. We have used condoms for over 10 years now and we tried having sex at the weekend but it was absolutely useless. OH understands all the problems, but I think this is difficult for him as we both need the closeness and intimacy at the moment. After 23 years together I think we are both finding this side of things very hard.