Tamoxifen and lady bits!

Hi everyone

 

I am 7 years into a 10 year stretch with Tamoxifen after lumpectomy and radiotherapy early 2010.  About 4.5 years ago I started with major problems down below including soreness, redness and burning pain when weeing.  I saw two specialists in 2012/13 who both diagnosed eczema and “treated” me for such with topical cortico-steroids. They didn’t work and the problem has remained in varying severity all this time. I’ve tried everything under the sun from Replens to natural yogurt to nappy creams, nothing has helped.  

 

I went back to my GP in January and was diagnosed with Lichen Sclerosus and given Dermovate (a super potent steroid).  The redness this caused my skin was visible from space!!! To cut a long story short as I didn’t agree with the diagnosis I insisted on a swab being taken and I asked for a referral to a vulval dermatologist, which I have paid for privately to speed things up.  The swab came back as a heavy growth of thrush (I’m type II diabetic too but well controlled) which I guess I could have had for ages (?) and I am currently undergoing a pretty intensive anti fungal treatment with fairly slow and limited response.  

 

Anyway I saw the Dermatologist yesterday and, in addition to the thrush, she has diagnosed me with vulvo-vaginal atrophy (VVA) which is almost certainly down to the Tamoxifen. She has recommended that I commence a low dose Oestrogen cream to help but I am very concerned about the effects of this as my tumour was oestrogen receptive.  She said that very little oestrogen gets into the blood stream and my Oncologist has confirmed this but I am very reluctant to consider it.  In her words she said “the next three years could be a very rough ride without it”.  As I understand it the alternative is to use a non hormonal vaginal moisturiser which I have tried before without much help (I can only really consider YES as it doesn’t contain sugars which would obviously aggravate my thrush).

 

My head is in the shed :womanfrustrated:.  This problem has been dragging on for over 4 years and is really negatively impacting on my life.  Any experience or advice regarding this would be greatly received.  Thanks so much!

Hi cj_1,

It’s sounds like you’ve been having such a frustrating experience. I am sure some of our users will be along to share their experiences and show their support soon. 

In the meantime you can always post on our Ask the Nurse board or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. The opening hours are below:

Monday-Friday, 9am-5pm
Late opening Wednesday, 9am-7pm
Saturday, 9am-1pm

Hi Cj

i too er+ and have been prescribed Vagifem which is an oestrogen medication due to very sore vulva, my oncologist and surgeon both said that the oestrogen does not get into the blood system.  Please give it a go

Im also 7 years into a 10 year stretch. Last frw months ive had 2 water infections bacterial vaginosis and thrush twice.

My bits are red raw .

Please keep posting your experiences and anything thats worked.

Smiles -have a look in the hormone therapy section - I have bumped up a very helpful post that deals with this issue .Hope it helps .

Just an update - since the VVA diagnosis I have not resorted to any hormonal therapy.  On the advice of the Dermatologist I have been taking a Fluconazole tablet once a month and occasionally using an ointment called Nystatin HC, which is an antifungal and mild cortisone treatment, when I begin to feel it flaring up again.  I have also had my Mirena IUD removed as research has shown that the thread can harbour resistant candida (thrush).

 

VVA reduces the natural acidity and weakens and thins the skin especially following any “trauma” ( eg sex or even wiping from rough or scented loo paper), so bugs that normally live quite happily on your skin without usually causing any issues, can really get a hold and cause problems.  After mentioning my problems to my breast care nurse at every visit for the last 6 odd years I still cannot believe that she continues to maintain that she does not know of anyone else who suffers from this side effect.   I can only assume that as it is of a slightly delicate nature that ladies are suffering in silence?

 

Having worked in genito urinary medicine for 7 years quite possibly I find it easier to discuss but am appalled that it took so long to get a diagnosis and find something that works!  Having to visit my GP FIVE TIMES in as many weeks before she performed a swab (which should be first line) is a joke, yet she was more than happy to hand out super potent steroids and give me a diagnosis just by looking at it (no biopsy) which had the potential to lead to another malignancy (lichen sclerosus)!!!  

 

Tamoxifen has so many side effects that I think it is everyone’s duty to report anything unusual or different once they commence it.  I have developed type II diabetes and liver function problems since starting it, in addition to all the usual - weight gain, hot flushes, thinning hair, etc etc.  If anyone has access to the British National Formulary (BNF) used in prescribing medicine the list of side effects is much more comprehensive than you find in the patient info leaflet in the pill packet and to be honest it’s quite scary! This drug is over 40 years old, why hasn’t an alternative been developed yet? There is no alternative for pre menopausal BC patients - why?  I appreciate all medications have side effects but with Tamoxifen you have Hobson’s choice (or you don’t take it at all), personally I gain great psychological strength from taking it despite all the nasties that come with it, but if there was an alternative I would have tried it!

 

Smiles73 if you are suffering from persistent genito-urinary infections it might be worth while being tested for diabetes - sugar in your urine can help feed infections, and use of certain vaginal moisturisers/lubricants can actually exacerbate BV and thrush as they contain glycerine.  From experience I find YES water based the least irritating, they are also always well presented and not “medical looking” in the slightest!!!

 

 

 

 

Thank you so much for all the comments. At least i dont feel like im on my own.

I have been tested for diabetes and that was fine luckily but found a vitamin D difficency at the same time.

Visit to the gp later. Doubt it will get me anywhere but i ll keep going until i get some where

In a side note. What have you been using for contracteption since youve had your coil removed.

Im so annoyed. Just left the gps and she says its just thrush and wont do anything else. Ive had it 3 times in 3 months
Says shes never heard of tamoxifen causing infections or anything else.

Go to your local GUM clinic. I had exactly the same problem with my GP. You may need a sustained course of Fluconazole and anti fungal ointment to combat it. I’m sure you will get a more sympathetic reception from GU doctors.

 Hi everyone 

 

Just thought I would give up an update…

 

I am currently using a product called Premeno Duo which is a non hormonal vaginal moisuriser, containing lactic and hyaluronic acid which changes the menopausal vaginal pH from alkaline (favourable conditions for a thrush fest!) back to an acidic state and provide a much needed moisture boost.  I am 5 days into the course and the change has been nothing short of miraculous!  No more inflammation/redness and minimal burning when peeing (happily bearable!).  Sadly they are not available on prescription therefore they are a bit pricey and a little messy (not on initial application but a bit sticky on a morning) but, hey, if they work who cares?!?

 

If, like me, you have tried every other lotion and potion under the sun, and don’t want to resort to topical oestrogen please give them a go.  I stick by my motto “there is nearly always a solution to the problem” - it’s only taken me 6 years to find it!!!  :smileylol:

Thanks for the update. Will try anything. Another period and another bout of something sore and painful. Xx

Did you buy them online. If so any particular site?

Hi - sorry you are having such a miserable time - there is a thread in the hormone therapy section with some ideas and at least one lady has been prescribed topical oestrogen cream so that may be worth discussing with your GP / Oncologist .Jill x

forum.breastcancercare.org.uk/t5/Hormone-therapy/Problems-with-quot-Ladybits-quot/m-p/1128638#M35642