Need advice on intimate problem!

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Hi to all you ladies out there

I am in dire need of some help and info if anyone could help me.

I am 2 years post DX and now 45yrs. I had a hormone responsive small tumour in left breast, had mast, recon and chemo, then chose not to have any more treatment as I suffered badly with side effects.

My problem is that I am now all over the place hormonally, I have had about 5 periods in the past 2yrs, and in between these, I have hot flushes. I am currently not having periods, and the flushes are back, but the real thing is I am in exteme pain if me and hubby try to make love, and I have tried every lubricant and gel going, but I always bleed and the pain makes it impossible.

I have heard some people mention pesseries or low dose oestrogen cream, and i know this would not be the best, but having no sex life is not an option that I want to consider.

I feel so fed up, and robbed, having gotten through all the treatment, and now feeling and looking like my old self, this one side of things is starting to depress me. Hubby is really good about things, but I can see he is scared of hurting me every time we try intimicy.

I thought in time it would get better, but no matter how careful we are, the pain is so bad, it is miserable.

Has any one else used the pesseries or cream, and if so did it work.

I have been to the GP on numerous occasions and found her less than sympathetic to my problem.

I will be grateful for any help.

Love Deborah.

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Firstly… I’d get a new GP. My mum had to deal with similar “just put up with it” rubbish and got a new one. She’s not a BC patient though.

I’ve read a few people using replense, sylk and things like that and it’s my understanding that the hormone based creams don’t get into your blood system but not sure I totally trust that.

Have you tried replense and/or sylk yet?

I haven’t needed them yet but to be honest I’m still recovering and intimacy for me is a cuddle as that’s all I’ve got energy for for now.

Hope a new GP helps… you do not have to put up with that attitude at all, you’d be doing other women a favour by telling them too.

Angie

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Hi Deborah

Whilst you wait for the other forum users to reply with their advice and experience you may find the BCC booklet on sexuality, intimacy and breast cancer helpful to read.

It can be found by going to following link:- breastcancercare.org.uk//docs/sexuality___feb_08_0.pdf

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

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Hi Angie, thanks for your reply.

I have tried sylk, replens and all the rest, but sadly to no avail.

I have made an appointment with another GP at the practice for next week ( the earliest I could get!) and have not seen this one before, so am hoping for a better response from her and will let you know how I get on.

After 2 years I had hoped things would be back to normal, but I will persevere until I get something sorted, I just wondered how other people cope, surely I can’t be the only one with this sort of problem. Its not something you can you shouting about though is it LOL

Thanks again, Deborah

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Hi Deb,

You’re not alone with this. Did you know there are nurses who deal with this type of issue in particular? You can ask to be referred. They are very understanding, easy to talk to and will try to find out what particularly is causing the pain.

I don’t know if this is an issue of dryness, if you have already tried Replens, etc to no avail.
Are your cervical smears up to date? Cervical erosion can cause bleeding with intercourse.
There are other conditions including endometriosis which can lead to painful intercourse.
That’s why you must insist on being properly examined to find out what the real problem is.

If dryness is the issue, then either trying olive oil (you can buy it in pretty bottles to keep on a shelf in the bedroom) as a last non-hormonal resort…or if it is suitable for you (and it may not be as you’ve had a hormone responsive BC, but you don’t mention whether it was oestrogen or progesterone sensitive) there is a low-dose oestriol cream that can be very helpful. You may already be aware that oestrogen comes in three main forms: oestrone, oestriol and oestradiol. Oestriol is the one which is most active on the vaginal and vulval tissues. Oestradiol is one you want to avoid, as it causes problems. With a history of BC, there’s no way any right thinking doctor will give you oestradiol!!!

You will need excellent medical advice for this. I’m just going by what my own doctors and medical team have told me personally.

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I am just over 2 years post diagnosis and finished Herceptin last May; my cancer was hormone negative. I suffered a pretty much overnight menopause after the first dose of chemo, periods just stopped, no hot flushes or anything. My Oncologists sent me to a menopause specialist as I was all over the place - I tried to take on a new job which seriously affected my confidence and I then starting suffering panic attacks. My libido had also completely disappeared which added to the anxiety as I’ve been married for over 20 years.

I’m on Vagifem oestrogen pessaries twice a week and have been told it’s quite safe to use them. The menopause specialist and the oncologists said they also have no real qualms about prescribing this for ladies who had hormone positive cancers as they deliver only one tenth of the dose of HRT and it’s just enough to take the edge away from the panic attacks, mood swings etc. I also have a libido again, not a great one, but it is there. The trick is it comes and goes so you have to try to go with the flow a bit and thankfully OH is fine about this.

I went to a woman GP at my surgery after having a bad appointment with a male one who just happens to be her husband. She gave me no sympathy and questioned everything the specialists had recommended as treatment. Both her and her husband were not willing to give approval for counselling, despite a Registrar, 2 Consultants and my breast nurse recommending it. At the end of the day my Oncologist overruled their opinion and referred me without the knowledge of my GP surgery. I am always hearing about women with BC seeing GPs who know very little about it - mine had no idea what Herceptin was or what it was used for, yet I was diagnosed when the press was full of the stories of women going to court. I also had one in the practice who held his hands up and went “whoa, you’re talking to the wrong guy, I don’t know about BC” the week after I was diagnosed! Maybe they would benefit from a bit of extra training on the subject.

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Hi Deb

You could always pop along to your local family planning clinic - they would be able to give you all the info etc and checks etc - if you don’t want to get rid of your GP. Since my BC I am no longer tolerant of poor service - GPs are there to deal with you concerns and being so dismissive is not acceptable. Given your history they should want to ensure everything is OK and sort out any problems that you have - life is for living and after all we go through being able to share our love and affection with our nearest and dearest is very important . Cancer does not just affect the one thats diagnosed - it affects all those around us. Please follow this up and get back to some good loving !!! - in the mean time you might have to be a little inventive!!!
Regards
Helen

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Well said, Helen. xx

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I meant to add that family planning clinics don’t diagnose gynaecologic conditions: they deal with cervical smears, thrush and certain blood tests for infections in some places. Beware that you don’t get a referral to any specialist from a family planning clinic.
I’d be inclined to seek out a better GP.

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I wondered if you could get help via your breast or oncology clinic like I did? On my discharge I was told the oncologists are there for patients during the 5 year remission period, despite the fact they are no longer seeing you for regular checks. I was given an extra check before discharge as the Consultant Oncologist told me they didn’t like to discharge patients if they had menopause issues to be treated or if the patient had been referred for counselling as they liked to make sure patients had their needs covered. I was discharged half way through counselling.

I can also get an appointment with the menopause specialist I saw for 5 years as her clinic keeps you in the system and I can contact them for an appointment without having to see my GP.

I know services vary around the country, but it might be worth enquiring about.

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Thanks to you all for your comments and taking the time to reply, I’m really grateful, and what wonderful support you get on here. Its good to talk to others who are or have been through the same. I haven’t been on here for a while, but the support is amazing.

You have given me a lot of useful information, and I shall face the GP with renewed confidence and knowledge, and I will insist on a referral, if she seems unable to help.

I am also going to ring the BC nurse today, and see if she can steer me in the right direction.

Thanks again for you help, and I will indeed keep you posted.

Love to all, Deborahxxxx

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Good idea to contact your BC nurse as they can access services your GP maybe doesn’t know about. Stirling University did a big study last year on cancer patients and most GPs said they were happy to take a back seat whilst the Consultants got on with it, but most said they felt they should be doing more for the patients registered with them who were undergoing cancer treatment. Quite shocking really, but at leat they were willing to admit their failings which is a step in the right direction.

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HI again

I rang the BC nurse and she was really helpful. She did mention the menopause clinic, but said I would have to go to one which deals with breast cancer patients, and I don’t have one really near me.

However, she has got me an appointment with the Oncologist for next Tuesday, 13th, so I am feeling a lot more positive, as they will hopefully be able to offer some help.

Thanks again to all.

Deborah xx

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Both my bcs have been oestrogen and progesterone positive and I’ve been told under no circumstances will I be prescribed anything containing oestrogen, not even for topical use. (Something about it still being able toget into the blood stream?).

But…I didn’t know there were THREE different types of oestrogen! - thank you, Puddleduck. I may take this up again with my onc to see if there’s anything out there for me after all…

I think that if you are hormone negative, there seem to be more options available.

I thought Replens was useless, Sylk is a bit better…

Good luck with this one, everybody.

X

S

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Hello all, My bc was completely oestrogen sensitive so I am not allowed any hormones at all. I had a hysterectomy at 34 so already menopausal but was on HRT. However, i had to stop after bc diagnosis. i have tried replens for dryness but found it very messy and hard to use. i am glad i am not the only one with problems in this department. I found it very frustrating as love my partner and have strong sexual feelings for him but physically it is too dry and painful.Has anyone got any other ideas?

Rach

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Hi Rachy

I have read recently that inserting gel capsules of Vitamin E can help with dryness, just as with face creams - not so messy, too . Have no idea how often this should be done, etc, etc…has anyone else heard of or tried this?

X

S

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I have tried sylk, replens and even the durex lubricants but have still not found anything that works to get me in the mood again. I have even stopped taking the arimidex in the hope that this might make a difference but now been 2 months and nothing so far. Deborah you will have to let us all know how appt with onc goes as maybe he will know of some miracle product we can all get in tanker loads!!!

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Hi again

I don’t think the lubricants can solve the libido problem, unfortunately.

What is rather coyly called hormone therapy (Tamoxifen, Arimidex et al), is, in fact, chemical castration, as far I’m concerned. I think that if you take anything that interferes with the oestrogen in the body, it will directly affect sex drive.

Let’s hope they come up with some LRT (Libido Replacement Therapy, lol) one day!

Let us know how you get on, Deb.

X

S

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Bahons2 has nailed it on the head - chemical castration. My libido has vanished too (on Tam and Zoladex) so got usual menopausal prob of dryness but found that Durex Sensilube works reasonably well as a lubricant so got that prob sorted out BUT I now have no inclination whatsoever for sex anymore - it gone, disappeared, last seen disappearing over the horizon several months back - perhaps it’s gone south for the winter but something tells me it’s not migration but emigration, never to return. I’m with you Bahons2 - we need LRT, and soon!!!

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Hi Everyone

Valkyrie your comments made me laugh - at least your sense of humour hasn’t left you - and I know its not a funny subject and really important. I am not currently suffering from this issue - although during chemo I too thought it had emigrated forever. Are there any homeopathic / natural vito oestrogen HRT alternatives that can be taken ???

If I get chance later might google natural alternatives to HRT - if any one has time perhaps they could share it with us -

Regards
Helen