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[joburgess]

Hi -
I am 51 with a history of fibrocystic breast disease. At one point I had 50-60 cysts in each breast and they are very painful, even now I am post menopausal.

My mother had post-menopausal breast cancer in her 60's and had radiotherapy + lumpectomy at the time. She has recently been diagnosed with the same thing in the other breast - 10-15 years later. My first cousin has had both breasts removed in her 40's after pre-menopausal breast cancer diagnosis.

I have had them aspirated about 4 times now and have haematomas and infections caused by the aspirations several times. I had an ultrasound last week because I would really like Livial (I think it's called) to help with libido and generally feeling crap. It determined I still had them and the examination was painful.

The issue I have is with mammograms - I will not have them. I tried to have one about 9 years ago (before anyone knew I had fibrocystic breast disease) and I'm afraid that it has completely put me off. To the degree that I refused the first test in 2016. I know that some may think me mad but this is a very real issue for me (and I am not a wimp when it comes to pain but my boobs are so very painful all the time).

My consultant has written to L&D hospital who are saying I am not eligible for MRI's (I had a private one done in 2014) and that I just have to go for mammograms. To be honest I would rather they took both breasts off and although I acknowledge that this might not come across well to breast cancer survivors, my anxiety over this is quite extreme.

Can anyone share their experiences and the way forward? Addenbrooks wouldn't do a BRCA test as only having mother and cousin develop breast cancer isn't enough criteria apparently.

[Dancinggirl]

Hi and welcome to MM joburgess
You poor thing - this all sounds so unpleasant and I can understand why you are resisting the mammograms. We now have an NHS that is obsessed with testing but, if tests don't show anything sinister, we get very poor ongoing help for often very distressing conditions. I have had cameras up and down every orafice over the last 2 years, nothing ominous found but no help with my ongoing symptoms - I've just had to find my own strategies to help my problems.
There is concern that breast screening is resulting in too much unnecessary treatment and distress and,  as I am very fortunate to not have had any problems with my breasts thus far, I doubt I will continue with breast screening now I am not on HRT. I am not suggesting other women should follow my example though and I may regret this decision.  I have had 2 friends who were given the all clear from their mammogram to then discover a cancerous lump a few months later - having said this I am sure this screening has saved many lives.
As to your dilemma: you say you want to take Livial to improve libido and make you feel better? Apart from a low sex drive what other symptoms are you wanting to improve?
What are your periods doing or when was your last period? I tried Livial (due to premature meno I've tried just about every HRT regime going) and it was ok to a point but I got awful acne with it.
Now 62, my libido is really not bad at all. I stopped hrt 2 years ago and expected the sex drive to disappear. I find my libido is maintained through a variety of strategies. Maintaining the intimate area is vital with local oestrogen (Vagifem) and vaginal
Moisturisers ( SYLK or the YES products) - if you are dry and sore then this really doesn't help. Looking after, not just your diet and exercise, which is very important, but taking care of your mental well-being I find is crucial to feeling ‘sexy'. Valuing yourself and feeling good about how you look I think helps to make one feel desirable. If you are stessed, feeling resentful about doing so much for others and anxious about health issues then it's very difficult to feel ‘In the mood'. Let's not forget your partners role in all this either!!! He must not make you feel pressured but put in the effort to make you feel special and desirable. Making time to look your best and doing things you want to do that make you feel positive can help, learn to say NO to things you don't want and try being a bit more selfish. No amount of hormones will truly help libido or your general health if you are feeling stressed, tired and have low self esteem.
Your doctors should also not pressure you over the mammograms - it is your body and you must make your own informed decisions. Sadly, you may just have to pay for mri scans if you feel you should be monitored. I have to say that in your position I wouldn't bother with Livial or any HRT treatment, in the hope it will solve your problems, as the anxiety of the possible risks might counter any good it could do.
Concentrate on getting the positive lifestyle that will support your general health and do everthing you can to boost your confidence - hopefully you can talk this through with your partner and if he wants you back feeling sexy and having fun together then he needs to help you find a good way forward.
You've had a tough time, you are feeling pressured and stressed so be kind to yourself  - HRT might well not deliver what you want as, in my experience, so many pills and treatments merely bring other problems. DG x

[Mary G]

I have breast ultrasound every year and the bloke who did it last time said that it is possible to just have ultrasound and not mammogram if you choose.  Is this an option for you?  Ultrasound picks up things that mammograms miss so it might put your mind at rest.  I was told I would only have to have an MRI scan if the density was at a number (?) I don't remember!  Perhaps this is the case with you.

I completely understand how you feel about masectomy and if you feel it is right for you them perhaps you should talk to someone and pursue it, you don't need to feel guilty about it.  Is there anywhere else you can go for the BRAC tests?

[rosie17]

I know exactly what you're going through, joburgess. I too had very painful fibrocystic breasts for many, many years, always worse before my periods. I had 2 breast biopsies (major surgery) at 2 different times, now have matching scars on each breast. I also had multiple aspirations...one doctor told me that I took the prize for the amount of fluid she drew out of just one lump, something like 64 cc of fluid. I seem to recall that she told me she could tell by the fluid she drew out if there was any concern, maybe the color or consistency, can't remember. Mammograms were excruciating and I finally declined them. They always showed abnormalities (the lumps) so I would also have to have an ultrasound afterward for better inspection. No one could explain to me why I couldn't skip the mammogram and go straight to the ultrasound. I would think the ultrasound you had would have shown anything out of the ordinary.

Fibrocystic breasts are very common, as you probably know, are benign, and hormonal. Here's a link that may ease your mind:

http://cancer-oncology.net/breast-cancer/bilateral-fibrocystic-breast-cysts/

I don't know where you are in your menopause journey, but my lumps went away completely when I was in menopause a while. I can't tell you how long it took, I just noticed one day that they weren't lumpy anymore and I had no more pain. Hormones can be a blessing and a curse at the same time!

I know how worried you are, especially since your mother has had breast cancer, and I wouldn't assume to tell you not to be concerned. All I can say is I know the pain you're going through, but my pain finally went away and more than likely it will be this way for you, too. Fingers crossed.

I'd send you a hug, but I know how painful hugs are with lumpy breasts!

[weathergirl]

Can I just add that dancinggirl's post is brilliant and spot on.  No amount of HRT will bring about good libido if one is stressed and overtaxed.  It really all starts with lifestyle and addressing the stressors and issues you have in your life first.  As far as mammograms, it's such a controversial topics.  I feel they are a good thing to do, but others will not and do not have them.  I respect every person's choice.   I think paying out of pocket for the MRI would be the most sensible thing to do if you cannot bear the mammogram - ultrasound is not as specific as MRI - each screening tool has its advantage and it seems that, other than MRI, none stand alone as completely comprehensive.  Yes, it will be costly, but it's your health and that is more important.  Perhaps discuss with your doctor and see if you can come up with a schedule that works for you - maybe every other year or even longer, depending on your own situation with the cysts.  I'm sorry you've had such a tough time.