You can get the dilators, plus advice, from Sh! the women's sex shop in Hoxton Square and also online. They have a wide range of lubricants too, which I have been investigating via samples. The best water based one so far is called Probe. Best of luck.
HI all who have been talling about all the awful side effects of Tamozifen. How about trying an A Inhibitor instead? I might try Arimidex, and I think I posted this on another forum. Two of my friends went on the real drug (had awful side effects with the generic) and had no side effects except for dryness. They both use an Estrogen ring and it stays local and does not enter the blood stream. Takes care of that issue!
Food for thought.... 🙂
Too true! I am married to a GP and he has learned a lot from my side effects sadly! I think our era of doctors were not taught about nutrition at all and I guess as it is such a hard thing to quantify there are no clinical trials. Sadly clinical trials are the only thing they take any notice of! Grrrrr! Kate xx
Hi Kate --
Isn't it sad that doctors are just trained to treat with drugs and have no education in nutrition?? This is the toolbox they are given, and they don't know how to answer any questions related to diet because most actually don't know! So they just say it doesn't make much difference....shameful.
Please read my post from a few minutes ago. Maybe there is a specialist PT in your area? I'm in Mass. in the US and assuming you're in the U.K. but don't know if you have these types of PT's over there?
Good luck, and I hope you find treatment! Happy Happy Wedding!
I just went to a short seminar at our local "Healing Garden" where a sex physical therapist talked. She helps with this issue, and there are wonderful results. Just thought I'd pass it along if you want to check it out with your PT's in your area. I forget the exact term for her specialty, but I do recall several techniques she uses to enlarge the vagina.
If not, good luck with your surgery -- yes, we all deserve a sex life! 🙂
You are not alone in your misery sadly! The best thing to do is to go onto the menopause matters website and find out who is your local specialist in this area. Most GP s will be happy to refer you as it is a very unrewarding use of time for them and a very specialised area of expertise. There is no doubt that this is a rough time for us all but as the ladies say below there are things we can do to help. I would also call the lovely lady at Jo Divine as she is really supportive and has loads of good ideas! Lots of luck. Kate x
I'm new to the forum, have been loitering but not posting.
I finished chemo followed by radiotherapy last April. I had been on HRT before I was diagnosed and felt brilliant, of course I had to stop that the day I was diagnosed. I take Tamoxifen, and I too have experienced the narrowed vagina and general drying out down there. 😞 I researched everywhere for an answer. In the end I saw my doctor, who wanted to dismiss the problem as vaginismus and send me on my way. But I insisted I see a specialist, and she referred me, albeit it reluctantly. I'm pleased to say that I saw the specialist a couple of weeks ago and he suggested one of two options. Firstly the dildo stretching exercise, but I'm 53 and I've not been able to have penetrative sex for two years, he said that was long enough, so we decided on the second option of surgery. On April 5th I go to have Fenton's Procedure, to widen the entrance of my vagina. He said I've every right to a sex life, even if it's only a couple of times a year (the Tamoxifen makes sure I don't fancy it often).
I just wanted to let people know that that there are options out there, and breast cancer doesn't need to be the end of our sex lives.
With regards to the 'dairy issue' I was told to eat lots of dairy to keep bones strong once I switched from Tamoxifen! 😮 I actually don't eat too much and drink semi skimmed organic milk but lots of it in tea (which is my drug of choice) 🙂
Hadn't realised about the link with dairy at all arhhhhhhhhhhh! 😮
Wouldn't it be lovely if we all got the same advice? Would help to stop all this stress!
Sorry no I had not seen this earlier as I have just seem this thread. No I do not have any answers I think there is more than one Libby x
lol - you are so right. And I must admit, I do a lot of research myself and then ask the professionals, too. Think I am lucky to have the kind of people around me down here in Brighton, who do care and do understand. They really try hard to find out, explore and find reference, which help to make reasonably educated decisions. Any decision is always a very personal one and is left up to us to make. Very understandable.
One of the biggest challenges and differentiation is - that most research is done (if it is done) into what CAUSES cancer, rather than reducing risk of recurrance. The cause of cancer and a diagnosed cancer recurring - due to what can make a cell DNA change (such as estrogen in an estrogen positive cancer) are two very different things.
As i am at it - although not to do with regaining a sex life, which is what this thread is about - i'll share this with you, too.
Dairy is another contentious issue. And in this case - for once - there is very recent and european research.
For those, who do not wish to go through it all - low fat dairy is good and does not increase the risk of breast cancer recurring. Which is good news, as many of us on hormone therapy need much calcium to keep our bones healthy. Natural sources of calcium, such as dairy, are better absorbed that calcium supplements. I have the longer printed version of it, but there is sti enough info on here
I have been so interested in reading all this. I read in the insert info in my Arimidex tablets that they can raise cholesterol levels. I did ask my Onc about this but his advice was ' keep taking the tablets' However my father and 3 male cousins all aged under 42 years have died of coronary heart disease and high cholesterol was a major factor in this. My brother has a very high cholesterol too but that was found when he was in the Royal Navy aged 30 and he has been on statins. Meanwhile I am the only female member of my family to have their cholesterol levels tested.... and yes mine is high too. So I always thought I might be in line for heart disease. Sorry I think this has strayed from the original topic .....
@Guest user wrote:
Hi all, i hope you can help. I finished my treatment 6 years ago (surgery, chemo, radiothreapy and tamoxifen) I am now post menopausal and everythign has changed beyond all recognition. Apart form totally zero libido, my vagina has become so small that not only can i no loner have penetrative sex but even inserting a pessarie for example would feel uncomfortable. No matter how lubricated the size is just an issue more than dryness. Now i was very sexually active before and even during my treatment so none of this feels like it's a pyscholigical thing it is very definatley physical.
My concern is that i am getting married in 6 weeks time and i really really don't want to spend my wedding night/honeymoon dreading any form of intamacy. Up to now i always manage to steer any sexual activity away from me and happily perform oral sex on my partner but he so desperately wants to make love to me but i will do anything to avoid it and i hate that!!!! I would do anything to get things back to how they were
I can't have HRT or anything hormone related becasue of the breast cancer so the usual avenues are closed to me. I would even risk the HRT for this if my GP would give it to me as it bothers me so much
Please help and thank you for reading
Talk about a controversial subject! I have seen more information on this forum than I have managed to glean from all my discussions with my medical people over the last 5 years. My advice from the oncologist was ' there is no evidence that diet has any effect at all'! One of my friends was sadly diagnosed before Christmas. She is also very interested in the nutrition side of things and asked the same oncologist the same question 5 years later. And ...... you guessed it - the same answer. He said that exercise and obesity are the only things with evidence based proof as contributory factors. I get very irritated that they refuse to engage with all the things that us lot have to worry about every day. It sounds like at least Sue's lot are interested in giving us up to date information which is fantastic! At least we have basic sensible rules to follow.
Happy munching 😃
Hi again Anthea,
Although soy is one way of reducing cholesterol - there are many other ways, which should not put estrogen positive BC diagnosed women at risk. But as I said - the jury is out, I simply shared the information I was given at my BCC Moving Forward course.
I personally rather avoid the risk, until proven otherwise.
Here is the article with regards to cholesterol lowering foods,which you might find of interest.
Hi again Sue
Phew! I was getting really worried about taking the Adcal tablets. I just don't want to be worrying about it all and it is all so confusing isn't it. I just read the words on the packet which state 'contains soya' and panicked a bit 😮 Good to know it's really small amounts though as I would rather stay clear until I am sure. Sometimes you really don't know which way to jump do you?
Thanks for replying! 🙂
Hi again MysteryMouse,
There is a difference between taking a Soya supplement, having natural soya in your diet and the amount of soya contained in Adcal, which is exceedingly small -
" What Adcal-D3 contains
The active substances are calcium carbonate (1500mg, equivalent to 600mg calcium) and vitamin D3 (400iu, equivalent to 10μg colecalciferol)." - Cholecalciferol, also known as vitamin D₃ and colecalciferol, is a type of vitamin D found in food and used as a dietary supplement. -
"The other ingredients are xylitol (E967), modified maize starch, sodium saccharin (E954), magnesium stearate and ‘Tutti-Frutti’ flavouring (contains propylene glycol (E1520)).
The vitamin D3 compound contains DLα-tocopherol, edible fats (including soya oil), gelatin, sucrose and corn starch."
1μg = 0.001mg. So as you can see the soya oil is a very minor part of 0.010mg of the Vitamin D compound.
Compared with 100g of soy beans containing 103920μg (103.92mg/0.10392g) of phytoestrogens, the amount in Adcal can hardly be measured.
I do hope it helps to settle the confusion
Thanks for replying.
Now I am very confused! I got the advice that I quoted earlier from the nurse at Breast Cancer Care and also a Pharmacist at my chemists said the samet thing.
I have to take Adcal which contains soya which was prescribed by my oncologist. What to do then? What do other ladies do? They must take it as well? I have to take it alongside anastrozole.
Just read this which also seems to back up what the nurse said too:- http://about-cancer.cancerresearchuk.org/about-cancer/breast-cancer/risks-causes/diet
Just want to do the right thing and all the advice seems to differ vastly. I guess the most important things are to not be over weight or drink too much alchohol (I don't drink any so don't have that worry) and to eat healthily and keep fit. I do all of this so just have to keep positive as well I suppose! 🙂
Thanks, thats helpful. My oncologist has suggested it might be as well to avoid swigging soy sauce untill we know more.
I do remember at medical school hearing that Japanese women had much lower rates of breast cancer..
Just having had the 'diet' presentation on the BCC Moving Forward course, delivered by a British Dietetic Association (BDA) registered dietitian, who is responsible for all things Diet at our regional cancer centre, I would like to share the following with you - as to regards to Soya and phytoestrogens.
Must research still does need to be done. Most of the research, which might point towards Soya having a positive effect with regards to recurrance - has been done in Asia, where soya has been a staple in the diet for many, many generations. This might mean that an asian persons body deals differently with the nutrients, etc. in this food, than Europeans, who have only quite recently introduced it into their diet.
The combination of all research is inconclusive - either one way or the other at the moment.
Our cells have receptors for estrogen and phyoesrogens have the same 'bonding' mechanism, as estrogen. Scientists do, as yet, not know, whether the 'bonding mechanisms simply latches on and simply blocks that receptor area or whether it actively works with the cell, as estrogen would do - very scientific stuff, sorry...
It is right that moderate amounts of soya - taken in our diet , NOT supplements, should do no harm.
A soya supplement is likely to have a much higher concentration of phytoestrogens than moderate amounts of soya in a natural diet.
You may find the table below of interest....
This is a snapshot of a soya supplement, of which it is recommended to take 2 tablets per day
It is, as always our personal choice.
However, I decided to avoid anything over 1000.. per 100g in my diet until research proves it does me no harm and will not aid recurrance.
I too was worried about phytoestrogens as the tablets I take contain Soya but here is what the nurse told me:-
'Information about soya and breast cancer can be confusing and conflicting. Soy contains isoflavones which are weak phytoestrogens. Phytoestrogens have a chemical structure similar to the female hormone oestrogen which is why there has been concern about its safety, but phytoestrogens are not the same thing as female hormones and don’t affect the body in the same way.
There isn’t any evidence to suggest a moderate amount of soy in a person’s diet is harmful. In fact there is emerging research that suggests it may be beneficial in reducing the risk of the cancer coming back.'
The information changes all the time!
Yes, I have had it prescribed and am using it religiously every three days. I have been advised to use for 3 months before trying to hae penetrative sex. So shall update in due course.
Hi I have just got my first tube of Hyalofemme from the chemist (vaginal hydrating gel) Has anyone used this before.? Its been recommended on this site by someones BCN
Will print all this off and investigate.
Good to know Damiana has phyto oestrogens. Will ditch that ASAP
Hi Sue ,
Thanks for for all the really interesting information. I am seeing a specialist at the end of the month too so I will let you know if I find out anything interesting from him!
I am am going to see a specialist chap at the end of the month about the duration of my aromatase therapy as I am approaching the 5 year mark. I have a long list of questions to ask him and will post any interesting findings on the forum. I have always been interested in the nutrition side of things but sadly I think that interest is not shared by most of the medics. I think this is largely a time thing but a lot of them are not well informed because the information is not out there for them either! My husband is a GP and he is not well versed on these topics. The general advice seems still to be ' eat a balanced diet and there is no evidence that any types of food ( other than junk food) should be avoided. A friend of mine has just been diagnosed with an ER +ve BC and was told by the oncologist that the only thing that was proven to make a difference was exercise and that she could drink as much alcohol as she liked!
I wish I believed that! Anyway thanks for all your really useful information and no doubt we will all chat again soon.
Lol - I really am not a medical person! or a specific diet person either, lol.
Again I refer to advice my my treatment team and sensible research......
The NHS and my treatment team are much in favour of retaining dairy in the diet, because the massive benefits outweigh any possible negatives.
We often forget that natural intake can be absorbed much better than supplements.
Yes, there is much written about hormones in cows milk - and of course this is of much concern for those of us, who have a hormone positive cancer.
What many do not seem to be aware of - it that here in Europe - legislation around hormone use in animals and especially cattle - has been outlawed since 1981. This is not the case in other areas in the world. Hence, when researching, it is always worth finding out where, geographically, the source of the infomation comes from. As in the US, for example, there is still lobbying going on to get hormones banned.
There are also strict rules in the EU about the timing of when a cows milk can be used for general consumption - i.e. so many weeks before giving birth and so many weeks past giving birth - the milk cannot be sold.
As always - it is a personal choice.
Thanks for that Sue. It is good to have concrete figures to work with! I am sad about the hummus though! The other issue that you mentioned was dairy products- a lot of people seem to be very anti these too. Have you been given any sensible information on the safety of dairy? Like you I still eat it but it always worries me that there is so much conflicting advice around.
Thanks for that Sue. It is good to have concrete figures to work with! I am sad about the hummus though!
Hi again, Kate
I am not surprised to hear that, lol.
OK - firstly it would be applicable for those of us who have an ER or PR positive cancer.
There is much contradicting research out there. And it has been explored more from the point of view of being a possible contributory or preventitive substance (research on Soya) for primary breast cancer. T have, as yet, not found anything on the effect with regards to recurrance/secondary/metastasizing breast cancer.
Phytoestrogens occurr naturally in most of our foods. The question is really around those foods/supplements, which have high amounts of them.
I am not a medical person at all, just have researched intelligently and used some logic, lol.
As phytoestrogens are said to mimic natural estrogen, and that is the 'food' my cancer feeds on - I have been advised to stay away from all supplements and foods high in these. There may be a difference for women on Tamoxifen and aromatase inhibitors, too - as both drugs work a little differently.
So basically - Tamoxifen stopps the effect of oestrogen, whilst aromatase inhibitors stops the making of estrogen from our bodyfat....
Hence someone on Tamoxifen may not wish to be careful about foods/supplements high in phytoestrogens - whilst a person on aromastase inhibitors might wish to avoid them.
It really is a personal choice. In my case - I rather am on the side of caution and shall follow the advice of my treatment team, until to has been proven that certain higher amounts of phytoestrogens do not encourage my cancer to come back.
I avoid items specifically high in them. This is a chart I use - and I stay away from everything over 700...per 100g.
I still will stay on dairy, because the natural intake of calcium is so much better absorbed by the body than a calcium supplement, but do have additional calcium and vitamin D presribed for me.
Hope it helps.
So good to hear you are making progress. in addition of what I wrote earlier, you may wish to explore is this website, to which I was referred by my oncologist. www.yesyesyes.org
He recommends YES CLEANSE intimate wash for cleaning, YES VM natural vaginal moisturiser for regular moisturising of the outside area and, as mentioned before Hyalofemme for internal moisturising.
This link may be of hel for understanding more about using 'toys' to help us
And this is a link - to a set of dilating dildos - as it might be a question of going from one size to another over time.
Trying these can be helpful in knowing what 'size' you can accommodate comfortably or to play with by yourself - to get your vagina to become more flexible again.
Damiana does contain phytoetrogens - so if you had an estrogen positive diagnosis, it may be well worth checking with your treatment team, whether they are happy for you to take it. If you are on Tamoxifen, they may be ok with it
I resorted to maca root - and was told in no uncertain terms NO. Being on Letrozol, which works different to Tamoxifen - I am not to take any comlimentary products, which conain phytoestrogens.
A lot to take in, but I to have a lovely BCN and a very supportive GP
Replense lubricant was useless and actually irritated my bits the GP did allow me Oestriol for one month.
I am also trying a homeopathic remedy which is a natural aphrodisiac.Damiana Leaf tincture
Don't tell my husband but actually had a little vaginal twitch in my sleep last night....Not had that since my operation Dec 2015.
So fingers crossed.
Can you give me some more details about the dildo dilators please Don't want to walk into Anne Summers spend a fortune and get it wrong i.e do more damage
You are all a great support
I've found that the water-based Yes Yes products are excellent. I use the applicators and the lubricant and things hanve improved quite dramatically.
The problems described by so many here are quite familiar to me, too. Thankfully I have a pretty clever BCN and am due an appointment with an oncologist tomorrow, who specialises in the effects of hormone withdrawal on women and our sex lives.
Unless we have had a hormone negative cancer any creams, lubricants, etc, which contain estrogen or other hormones seem to be completely off the agenda for us.
So I started to explore the basics and the reason behind it all and now have a relatively good understanding of it.
Yes, we might have a choice of whether we continue taking our hormone depleting/destroying tablets or whether we risk our cancer returning in another part of our body. If it should - things will not be as 'easy' as they were the first time round. And I know which choice I'd rather make.
Unfortunately the challenge of difficult sex will not easily go away, but I shall be happy to share, should my oncologist come up with something new.
There are some basic things we can do. Only ever use warm water to clean your 'bits' Try and stay away from soap or even products, such as Femfresh and alike. These can irritate the very delicate skin, made more delicate because of estrogen withdrawal. Moisturise 'outside' only with plain Vaseline. This is likely to help with cracking, soreness and bleeding on the outside.
The inner walls are likely to shrink and thin - making penetrative sex painful and difficult. And this can also lead to more frequent urinary tract infections, too.
So a moisturizer applied regularly 'inside' over a period of time, may help this to a degree. This kind of moisturizing should become part of our sexual hygiene routine - just as we moisturize our faces.
Products such as Hyalofemme can be prescribed by your GP, and if you are still on prescription exemption, as I am - there is no cost involved.
If you have not been sexually active for a while, it may be an idea to start 'training' and finding out by yourself, what is possible and what not. Should you have a sympathetic partner - it might also be a great and fun way to get back into the swing of things.
There are a number of dildo dilators, which can be purchased on line. Using these in conjunction with an oil based, rather than a waterbased, lubricant may help you to see. what 'she' is capable of - and perhaps 'train' her to be more accommodating.
Lubricants should not contain any perfumes or 'pleasure enhancing' additives, as this may irritate your delicate bits too much. An oil based lubricant will be longer lasting and more comfortable than a water based one.
Unfortunately, here in the UK, there are very few, if any specialists in the area of dealing with this subject for women, who have sexual difficulties, because they cannot use hormone based products.
Hoping that these tips may be of help.
I went to a great discussion group at this Center for women with breast cancer near my hometown in metro west Boston. I think she was called a "pelvic physical therapist" and works with women who have the same issues as yourself. I don't know where you live, but try googling this type of physical therapist. Women have said that she has been a miracle worker, and have resumed a sex life that they thught was lost. Good luck and let us know.
I just joined this forum to see if I want to go on Tamoxifen after treatment, and weigh all the pros and cons.
Might need to go down that route. 3 weeks holiday did not help my mood and when using Replense had some vaginal bleeding......Need to look into that now I am back. Never ending doctors appointments !!!!