no libido and painful narrowed vagina

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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 itā€™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 donā€™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 canā€™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

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Please help and thank you for reading

Libby

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Hi Libby,

There are many who have contributed to this forum who share your distressing problem. There are various options but I would strongly encourage you to see a menopause specialist who can give you the time and understanding that is required. This is an area where your GP may be happy to refer you but you may have to pay for a private consult if there is not an NHS consultant in your area. It is worth googling to see who there is in your area. If you donā€™t find anyone you could go onto the Menopause Matters website and email Heather Currie with a detailed history . It costs Ā£25 but would probably be well worth it. She could point you in the right direction.Ā 

Sadly we all think that the initial treatment in Breast Cancer is tough but the ongoing hormonal issues can be far more challenging , particularly when everyone thinks that we should be fine! Your partner sounds like a lovely caring man so I am sure he will wait as long as it takes for you.Ā 

The other person I would call is a company called Jo Divine. It is run by a lovely ex nurse who can give you ideas about reclaiming your femininity. She is very to the point but helped me a lot and made me laugh!Ā 

Wishing you lots of luck. Best wishes from Kate.Ā 

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Hi Libby

I am in the same position as you right now. I was diagnosed March 2014 and finished treatment November 2014. They said I was post menopausal even tho I had had no side effects prior to treatment. From January 2015 the oncologist was pressing me to,take ananstrozole which I did and lasted 15 days before stopping due to se. From then they pressed me to take tamoxifen which I didnā€™t until February 2016 I lasted about 6 weeks before sheā€™s made me stop. Everything went back to normal quickly apart from extremely painful penetrative sex. OMG I know where you are coming for. About staying clear. I am just finished a course of Vagifem which is an elstrogen tablet inserted (applicator only as thin as a pencil! But it isnā€™t working so I have an appointment 14 Sept with my gp to see where Imgo from here.

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just wondering how you have got on since your post at the beginning of August?

Michelle

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I really feel for you and am having the same problems. I posted in a previous thread about a couple of things that helped me. Aloe Vera is pretty good as a lubricant and my GP suggested I visited a medical herbalist who has really helped me. She prescribed a mixture based on marigold extract to help with healing and it has definitely made a difference and eased the pain of intercourse. She works with a gynaecologist who specialises in the menopause. Iā€™ve also recently started using Yes products as lubricants and they seem to be quite good so Iā€™ll persevere with those too. Lack of libido is still a problem so I will probably ask my herbalist if thereā€™s anything she can give me to help with that. Good luck!

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Thanks to you all.

Went for my first mammogram today 1yr on and managed to talk to my lovely Breast Cancer Nurse Barbara. She has given me good ideas to start with Donā€™t really need lubrication but going to try ā€˜moisturisersā€™ to begin with.Outside labia just feel dry and sensitive which make any foreplay awkward. So hopefully this will help.

Will let you know how I get on

AntheaxĀ 

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Itā€™s worth finding a sex therapist and relationship counsellor. Available privately (registered with college of sex and relationship therapists online) and through Relate. Sometimes free at Relate if thereā€™s an arrangement with Macmillan.

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Hi Libby-

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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 ā€œpelvic physical therapistā€ and works with women who have the same issues as yourself. I donā€™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.

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I just joined this forum to see if I want to go on Tamoxifen after treatment, and weigh all the pros and cons.

B

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Hi allā€¦

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 ā€˜easyā€™ as they were the first time round. And I know which choice Iā€™d rather make.

Unfortunately the challenge Ā 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 ā€˜bitsā€™ Try and stay away from soap or evenĀ products, such as Femfresh and alike. These can irritate the very delicate skin, made more delicate because of estrogen withdrawal. Moisturise ā€˜outsideā€™ only with plain Vaseline. ThisĀ is likely to help with cracking, soreness and bleeding on the outside.

The inner wallsĀ 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 regularlyĀ ā€˜insideā€™ 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 HyalofemmeĀ 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 ā€˜trainingā€™ 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 ofĀ 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 ā€˜sheā€™ is capable of - and perhaps ā€˜trainā€™ her to be more accommodating.

Lubricants should not contain any perfumes or ā€˜pleasure enhancingā€™ additives, as this may irritate your delicate bits too much. An oil basedĀ 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.

Sue x

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I too was worried about phytoestrogens as the tablets I take contain Soya but here is what the nurse told me:-

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'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,Ā  but phytoestrogens are not the same thing as female hormones and donā€™t affect the body in the same way.

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There isnā€™t any evidence to suggest a moderate amount of soy in a personā€™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.ā€™

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The information changes all the time!

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MM

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Hi Sue

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Thanks for replying.

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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.

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I have to take Adcal which contains soya which was prescribed by my oncologist. What to do then? What do other ladies do? Ā They must take it as well? Ā I have to take it alongside anastrozole.

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Just read this which also seems to back up what the nurse said too:-Ā about-cancer.cancerresearchuk.org/about-cancer/breast-cancer/risks-causes/diet

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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 donā€™t drink any so donā€™t have that worry) and to eat healthily and keep fit. Ā I do all of this so just have to keep positive as well I suppose! :slight_smile:

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MM

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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 Ā was ā€™ keep taking the tabletsā€™ Ā 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 testedā€¦ 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 ā€¦

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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

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Hi there

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Iā€™m new to the forum, have been loitering but not posting.

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I finished chemo followed by radiotherapy last April. Ā I had been on HRT before I was diagnosed and felt brilliant, of course I had to stop that the day I was diagnosed. Ā I take Tamoxifen, and I too have experienced the narrowed vagina and general drying out down there. :frowning: Ā I researched everywhere for an answer. Ā In the end I saw my doctor, who wanted to dismiss the problem as vaginismus and send me on my way. Ā But I insisted I see a specialist, and she referred me, albeit it reluctantly. Ā Iā€™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 Iā€™m 53 and Iā€™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. Ā On April 5th I go to have Fentonā€™s Procedure, to widen the entrance of my vagina. He said Iā€™ve every right to a sex life, even if itā€™s only a couple of times a year (the Tamoxifen makes sure I donā€™t fancy it often).

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I just wanted to let people know that that there are options out there, and breast cancer doesnā€™t need to be the end of our sex lives.

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Deb

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The trouble is not that I canā€™t have sex. The problem is I have no sex drive or feelings during it. Iā€™m am extremely dry so use moisturisers but itā€™s still uncomfortable during as my partner takes some time lol. Told him itā€™s better quick. But not much fun for him with me wishing it to be over. Also itā€™s sore and burns after. Donā€™t know what the solution is. Donā€™t think there is one x

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There is help available (if you read the posts below youā€™ll see a number of people have found things which have helped them). The key seems to be finding a sympathetic GP whoā€™ll refer you to a gynaecologist with expertise in this area - pardon the pun! I went to see a medical herbalist who gave me a marigold mixture to take orally and this did make a difference. Marigold (calendula) helps with healing and I found it had the unexpected side effect of helping the wound site on my breast to heal! Iā€™ve also been using the Yes lubricants which have been far more effective than others Iā€™ve used. Things still arenā€™t perfect so Iā€™m going to make an appointment to see a gynaecologist who collaborates with the herbalist to see if thereā€™s anything further she can do to help. Donā€™t give up - it might take a while but hopefully you can find the help you need. Good luck!

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Medical training is very broad based and you do cover nutrition but by the time you get to specialise, medical school is a long time ago and much of what you learned back then is out of date. As a patient, I want my GP and oncologist to know everything. As a doctor, I wish I did know everything but itā€™s impossible to keep up to date with everything. Not very helpful but the honest truth.