I have started getting a weak bladder recently. Not stress incontinence, more a leaking which obviously smells. I am so depressed about this. It is one more thing to have to deal with. I do feel I have aged drastically this year. Been on arimidex now tamoxifen which has got rid of any youth providing oestrogen and was wondering if this would be the cause.
I am at the hosp next week for my routine check-up and will mention it there but any tips to cope with this would help. I also have zero sex drive and sex is very painful. Could all these things be linked?
Thanks Irene
Hi Irene. Writing more in sympathy than with any pearls of wisdom! Can I ask why you have been switched from the Arimidex to the Tamoxifen? I started Arimidex recently, and so have been reading up about it! Arimidex is only given to post-menopausal women, and also suppresses production of oestrogen (produced by the adrenals when you are post menopausal). I’m afraid that zero sex drive seems pretty much to go with the territory of Tamoxifen, and certainly painful sex and a weak bladder can be linked to reduced oestrogen - yes, it’s very likely that they are all linked, and do tell them at the hospital how miserable it is making your life. The first recommendation for any kind of leaky bladder is usually to be really vigilant doing pelvic floor exercises (tightening and drawing up pelvic muscles). If you are not sure what to do, ask at the hospital - they can really help. Painful sex is bound to lower your sex drive even more than just not wanting to do it - are you using a lubricant? I find if I can really relax then the pain/discomfort lessens/goes away - it’s a viscious circle, I know. Have you talked to your partner about this, so that he is as understanding as possible, and can take everything at your pace, and the way you want to be. I think having “zero sex drive” doesn’t mean that you can’t enjoy sex, but sometimes the enjoyment part doesn’t come until you have got started, if you see what I mean! Do talk all this through at the hospital, and if you don’t feel comfortable why not ask for a referral to a specialist. Very best of luck and please let us know how you get on. Sarah x
Hi Sarah
Thanks for your pearls! I had horrendous joint pain from arimidex which has lessened on tamox, though as suspected I have gained a lot of weight which was why I didn’t switch sooner. (10 mths with arim).
I am thinking that I want to come off the hormone treatment as quality of life pretty poor just now but part of me is too scared!
When I read some of the threads on here I feel stupid as my complaints are relatively minor but just totally fed up with it all at present.
Irene
To Irene
I think you should definitely ask to see a Bladder Specialist, I don’t think it’s something you should accept as being part and parcel of the treatment. I was on Tamoxifen for 3 years without any problems at all, I also had total abdominal hysterectomy with removal of ovaries last summer, but the worst thing I’ve found to make me feel like sh**, is basically the Arimidex. Only been on them for about 7 weeks, and they’re awful. I feel like an old woman, get up in the morning and can hardly move.
Even though by rights I shouldn’t have a sex drive at all, what with the hysterectomy and all the medication, and the lack of decent breasts (had bilateral mastec and recon ) the one thing guaranteed to stop me is feeling this dreadful, it’s so draining being constantly in some sort of pain with the joints. So I am definitely going back on Tamoxifen. Luckily I’ve haven’t had the vaginal dryness or any pain during intercourse, so I suppose I’ve been fortunate in that. My sex drive goes up and down as my confidence does, if I am feeling good, and lively and attractive, then it goes up, if I’m feeling crabby and old and achey it goes down.
You definitely need to ask to be referred to a Urologist though, you really shouldn’t need to put up with that, there must be something they can do or suggest.
Good luck
Julie
hi Irene,
I can really sympathise with you. When the CURE gives you yet another problem it is so hard to come to terms with. Steroids gave me diabetes. How I hate the bl…dy thing, and it makes me so angry. I hope that this is sorted out for you.
Margaret
Hi all… what a trip down memory lane…I had a total hysterectomy at 48 yrs in 1991,due to fibroids and some 10 D & C’s, but no gynae surgeon would operate on me because of adhesions of my uterus to my large colon caused by Crohn’s. I was then being treated by the Hammersmith Hospital in London. When we repatriated to England because of Crohn’s problems, the lady we sold our house to had cyst problems on her ovaries and found a private gynae…his mother had Crohn’s and he said, no problem. Brilliant… sorted out my 10 days of bleeding twice a month, but he found I had a bi-cornuate womb.
Sex was already definitely off the agenda as I caught Leishmaniasis in Spain and had a foul green smelly discharge and we have not had sex for some 18 yrs. Arimidex has left me with zero sex drive, and hubby now 80 yrs old next month, but think he watches sex sites on the internet. I was very upset as we always had a great sex life, but time and bad health moves on and priorities change for people as old as we are… I am a very young 63 yr old!
Julie and Irene, I don’t understand why you have gone back on to tamoxifen after Arimidex as you must be post menopausal to have been prescribed Arimidex. I was on Arimidex for 4 yrs until 4 months ago, and last week prescribed Aromasin by an Onc I have never even seen (by letter to my GP which I am incandescant about as I asked for a referral) says the side effects could be similar, although have read on this site, some others have no problems with Aromasin. Started it yesterday…not that I want sex again, just no bone pains and protection for bc recurrence. Perhaps I am asking for the moon and stars?
Bit late, too many glasses of wine, as I can’t eat due to current Crohn’s problems so not making too much sense…
Love,
Liz.
To Liz
I haven’t gone back on Tamoxifen yet, I’ve said I hate the Arimidex because of all the pains and aches in my joints, and will probably change from Arimidex back to Tamoxifen. I was post menopausal, I had had a hysterectomy with removal of ovaries a year ago, however, as I’ve said I had no problems with Tamoxifen and have a bucket load of problems with Arimidex, that’s why I was to change back, although as I said I haven’t done it yet. Seeing the Breast Surgeon next week. He may well change me to another aromase inhibitor that doesn’t give me so many pains. All I know is that I am normally a 51 year old livewire with an extremely lively 43 year old partner, and for all I’ve been through, still enjoy an extremely good sex life, and I am not giving that up for a long time yet. I cannot for the life for me see the point in putting up with all the pains that come with Arimidex for the sake of a relatively small percentage of difference in my prognosis. I know Arimidex is supposed to give a better prognosis, but I don’t think it is by a huge percentage, when compared with Tamoxifen, although I will take this all up with the Surgeon.
Enjoy your wine, don’t get too sozzled on an empty stomach
Julie x
Hi Julie… try and get another aromotase inhibitor as I have just done, after struggling with severe joint pains fort 4 yrs, can’t understand why it took me so long. but terrifed to stop Arimidex, as my prognosis was not too good, with lymph node spread. Just gone onto Aromasin 2 days ago so don’t know if the side effects will be okay, but feel I have to try them. I used to wake up every 2 hours with stabbing knife like pains in my left hip, and lately could only walk on the toes of my left foot! I just had to do something, so stopped the Arimidex 2 months ago. All the joint pains went, so it was obviously the problem. Pray the aromasin will give me the protection I need and not have side effects…it can’t be any more troublesome than Arimidex can it?
Take care,cyber hugs…and enjoy your sex life!
Liz.
PS Julie, I was only on tamoxifen for 2 months when my late Onc (now retired) switched me to Arimidex…it has a 50% better prognosis for non recurrence, so thought I should go for it. Why don’t these Oncs tell us of the side effects? Yaargh! they only know the scientific knowledge and don’t have to deal with the side effects we have.
Let’s hope we can sort out what is right for ourselves.
Liz.
Hi Liz
I am sure I was told by both the Breast Care Nurse and my GP that although it had a better prognosis it wasn’t huge so I am going to check that out more thoroughly. 50% is a huge difference, but that is not what I’ve been led to believe, so will thoroughly check that out.
I was very fortunate in that I was told I didn’t have any in my lymph nodes. I had both breasts off, and nothing in nodes, had no chemo or rads, because they thought it was Grade 2 lobular, no lymph node involvement and had both breasts off, (followed by recon) so they thought I had a good prognosis. Let’s hope they’re right.
Was supposed to be at GPs today, but it got cancelled because GP on sick leave, they offered me another in the practice, however, I want to go through it all with him, so will wait until he gets back.
Lots of Love
Julie
Irene, it sounds as if you may have a bladder/and or uterine prolapse - something that sometimes happens in post-menopausal ladies, I suffer myself. Childbearing and weakening of the pelvic floor muscles, and lack of hormones can make the problem worse, as can being overweight.
There is an operation to repair a prolapsed bladder, but being a coward I refused this! Wish now that I had gone ahead with it years ago! I have seen the wonderfully named Incontinence Nurse, who advised cutting out caffeine (it irritates the bladder and makes matters worse)…I now drink Redbush Tea which is naturally caffeine-free. You should also exercise your pelvic floor muscles if you can find them, lol…I seem to have been born without any! These muscles help to support the bladder and uterus. I also found that pressure on the bladder is reduced by losing weight that is carried around the middle, and smaller lighter meals which are easier to digest and therefore lead to less stools being produced help too…I find that my bladder leakage is worse when I have a very full stomach and subsequently a full bowel. Also try and avoid getting constipated.
Anyway, I manage reasonably well with the prolapse, although I still wear my Tena Ladies just in case!
As for a sex life, I don’t have one, so I can’t help you out on that!
xxx
Thanks all for advice, esp justme who seemed to say things that made a lot of sense. I am overweight and don’t exercise much. I already drink decaf tea inc redbush, but since chemo, have discovered I like coffee, never drank it much before! I am just starting to make a consious effort to exercise my pf muscles and am beginning a diet this week, also cutting down on wine. I hope a combination of these things help.
Had app at hosp but it was pointless. Doc just wanted me to see gp about it but she agrees that it is most likely my cancer treatment that is causing it so it is really their field. Maybe he just didn’t want to look at my bits! That’s ok, I didn’t want him to!
It’s very odd, but this prob comes and goes and is not stress incontenence. It does get me down though, I feel like an old lady (I’m 49).
Irene
Irene you can buy these things in Boots, dont know the name but can find out for you if you want. You could ask the pharmacist also. They are little plastic egg shaped things with weights in them They tell you how to start the excercises and what weights to use etc. There is a whole course to follow. As you can probly tell i bought them but never got round to using them but maybe i should find them and start, prevention better than cure. They are for lazy people i suppose as you can wash the pots or load the dishwasher with these things in (just afew mins at a time) and you dont have to bother squeezing!!!
Where do you put them? I think I know but could be wrong!
No, you are not wrong. Into the vagina, it tells you were abouts, it just improves your pelvic floor muscles without having to do any squeezing and as i said there is a set excercise time table to follow then just maintenance after.
Ask your GP to refer you to your local physio department - they should have access to an expert in womans health problems who can hopefully sort you out.
The weights that pineapple is talking about are called "cones!!
Hi Irene,
I have written on other “down below” thread too, but I have had a prob with water worksas well as thrush type dryness, waterworks used to be bit weak but following chemo EC and the E is an irritant to the bladder, so it has been worse since, also I have not been exercising at pilates and doing pelvic exercises. I have been trying to do them and breast nurse did urine test to check for infection and that was ok, so she said to keep a eye and hopefully it will improve. If not she said I could go to see specialist for a chat. Hope it sorts self out cos I think I have seen enough docs to last me a lifetime.
I have also cut out coffee and caffeine which def makes it worse, also alchol is abit of a trigger too,
Take care
Dawn x