69.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Tamoxifen and heavy bleeding

33 REPLIES 33
ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Nicola

 

Woo hoo great to hear that you are coming on well.  I did the same, paid my brother to come in twice a week to do my housework and put the shopping delivery away, unfortunately my partner has MS and is not able to do anything around the house, but I had a very good friend who came in every day to do stuff.  Honestly you need to allow at LEAST 6 weeks mate before you start back to work.  I do an office job and sit most of the day and when I went back 9 weeks after my op, I really felt it for several week and I was doing a phased return to work over 4 weeks building up from 12 hours a week to my normal 25 hours.

 

Very glad I have been able to be of help xxx

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Thanks for your message Helena. I’m pleased to report that things have really improved over the last week, I’m now about 3.5 weeks post op and have just about kicked the painkillers completely, apart from as you say occasionally first thing in the morning. 

Managing to walk up to about 30mins as well and doing little jobs around the house one plate at a time! No housework though! Paid my student son to do that at the weekend! I’m really glad I had it done too. Not going back to work for another 3  weeks yet and then I might do just mornings for the first week if I can. Menopause doesn’t seem to have hit too hard yet so fingers crossed on that one.

Glad you have recovered so well and are getting back to normal. 

Thanks for your support,

Nicola

x

ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Nicola

 

Soory I have not been in touch, been manic in my general life and getting back to my normal 25 hours per week.

 

h I so remember that pain, I used to get it on the left side in th groin area, almost like I could feel the stitches pulling.  Whenever I got it I would gently lower myself back down on the bed again until it passed.  I think I was on paracetomol for about 4 weeks, however I was decreasing the number I took in the day over that time until the last week when I would just have two first thing in the morning to help me when getting out of bed and the same when going to bed.

 

I am back to normal, just being careful not to lift anything too heavy at the moment, but I think part of that is the fear of overdoing it.  I am now just over 4 months post surgery and I have to say it was absolutely the right thing to have had it.  I used to have a pain in my left side which over the course of the months before my op was getting worse, it has totally disappeared.

 

Hope you are doing well and improving steadily, not overdoing things!! However I am sure you will find if you do your body lets you know about it.  The one thing I still find is that if I do not have my weetabix, then fruit and yoghurt I do get constipation which can still be rather uncomfortable.  Happy to say though that I am feeling better than I have in many years.

 

Helena xxx

 

 

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Hi Pam, that all sounds a nightmare! I also had problems with a Mireya coil several years ago as mine had come out without me realizing before the six week check!
You don’t say how old you are, is there any likelihood you would want more children? Is there no possibility of removing the coil using the equipment they use to do a hysteroscopy?
Having had the op I would say that although the recovery will be at least 6 weeks off work, I am recovering more quickly than I did from the mastectomy and reconstruction op 4 years ago. At 54 I was glad to finally get rid of the heavy periods and as I saw it hopefully remove the risk of womb, ovarian and cervical cancers.
I wish you well in your decision making, Nicola xx
PamRob
Member

Re: Tamoxifen and heavy bleeding

I have followed these posts with interest. I am just going through radiotherapy which will finish next Weds. The day before though I have an appointment with the gynaecologist to discuss a possible hysterectomy. When I was first diagnosed with invasive lobular breast cancer I was advised to have my mirena coil removed. Unfortunately it was not straight forward and  to cut a long story short it has disappeared . I had endometrial ablation a few years ago and it seems the lining of the womb is very scarred and the coil is embedded in it.  The breast cancer surgeon has advised not to worry about it, just make sure I stay on Tamoxifen and forget about it. The Oncologist appreciated that I am anxious about this foreign body being in my body and said if I was happy to have a full hysterectomy then I should go ahead after I finish radiotherapy. 

The gynaecologist thinks hysterectomy only option if I want to remove the coil, but it’s up to me.

My mind is buzzing....I feel so confused. I have been incredibly fortunate, recovering well after lumpectomy , no need for chemo and not suffering from any ill effects of radiotherapy. I still need further surgery on my other breast to match them at some point. Am I  mad to be thinking of putting my body through hysterectomy too?I just don’t know what to do for the best. 

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Hi Helena,

Thanks for your advice. It’s useful to know how soon I should be able to expect to walk a bit. So far only to the bathroom and back and to make myself a drink with the travel kettle! Not doing too bad with getting out of bed, and managing to sleep on my side if I keep my knees high but woke myself up yelping in pain this morning when something pulled. 

I’m certainly in no hurry to do away with the painkillers! Still, the bonus is no more periods and my tummy definitely looks flatter (when it’s not blown up like a balloon with wind!). Goodness knows when my menopause would have finally come if I’d left things to continue, I’m 54 and was still having really heavy periods every month! Everyone I’ve spoken to who’s had the op says it’s the best thing they’ve done so hopefully I’ll feel the same in a few weeks. 

I assume you’re pretty much back to normal mobility now? The physio told me it would be 12 weeks before everything inside heals. My jogging days seem a distant dream at the moment! 

Nicola xx

ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Kiki

 

Thats what got me, especially on the one side, trying to get up and down out of bed was a nightmare for the first couple of weeks, of course we see the stitches on the outside but there are much more inside that will take weeks to heal.  Honestly it does get better.  I got very adept at gripping the sheet and the edge of the bed gently swinging my legs round, if it started to hurt then I backed off. I have a curvature of the spine so found sleeping on my right side hurt a lot, solution was I put the pillows at the bottom of the bed so that I could sleep on my left side.  I spent two weeks sleeping in the spare room so that I didnt disturb my partner and it would have been interesting if I had done that in the same bed as him 🙂 🙂

 

I am afraid patience is the order of the day you just need to let everything take its time, not an easy thing to do though but I kept thinking of the consequences if I didnt do as I was told.  One thing, I got so frustrated because of the things I could not do.  My partner bought me a grabber at the recommendation of a friend who said it was only when you could not pick something up you realised how many times you dropped things. 

 

I bought myself several pairs of baggy elasticated waist trousers as it was so much easier to put them on and they did not press against my tummy.  It was about three weeks after my op that I started venturing out to just walk a little way up our road and back on the flat surface, just getting out for those few moments made such a difference to my overall state of mind.  I would count how many steps I took and then gently increased it keeping in mind that I had to do the walk back to the house!!

 

Helena xxx

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Mine was also bikini line but dissolvable stitches, can’t believe how long the scar is, at least 30cm! The outside seems to be healing well but it’s really pulling inside when I stand or sit upright for longer than a couple of minutes! Still it is only a week since it was done, just have to be patient!
Rang the breast unit today and they are checking my notes and getting back to me next week. Xx
ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Kiki

 

Know what you mean, Did you have the bikini line op, I had 42 staples in mine, did have a bit of an issue with a very small part of it not healing properly and it had to be dressed every other day but have to say it is all settled down now and does not look too bad.

 

I must admit I only had to do my DVT injections for 7 days in total but that was enough, the injection itself didnt hurt but flipping heck I felt it afterwards and it really bruised, not good when you have to alternate the sides you do it on 😞

 

Although I am post menopausal, because of I osteoporosis of the spine my oncologist put me on tamoxifen as it is kinder on the bones than post menopausal hormone tablets.  Honestly can not see why they would not let you, mine were very happy to.

 

Helena xxx

 

 

Kiki2
Member

Re: Tamoxifen and heavy bleeding

That’s really helpful Helena thank you, I’m also wearing the compression stockings and have to do anti clotting injections into my stomach for two weeks. I’m taking it very steady and recovering ok so far. Couldn’t believe the length of the scar! As I said I would definitely rather stick to the tamoxifen than change so hopefully they will say the same to me. Xx

ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Nic

 

I too have had a full hysterectomy in Oct 2018, the lining of my womb was thickened 28mm instead of 5mm!!  The professionals were all confident that it was due to the tamo and nothing more serious, and they were right.

 

I came off tamo 2 weeks before surgery and was advised by oncologist to start it again 2 weeks after surgery.  The consultant who did my hysterectomy actually said to me that the silver lining of the hysterectomy was that I would be able to go back on it again as I had no womb for it to cause problems with.  One thing she did say to me was that I absolutely had to wear the compression stockings for six weeks after surgery, which I did.

 

Make sure you do take it very easy, these early weeks are the most important for your recovery from it.

 

Sending you lots of hugs

 

Helena  xx

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Hello ladies,

looking for advice or other people’s experience. I had my total hysterectomy last Friday with ovaries, tubes and cervix removed as well. The surgeon said the fibroids in my womb were like clementines and were the size of a 5 month pregnancy! So far so good on the recovery, came home Monday and taking it very easy. 

My query s over tamoxifen. I was diagnosed 4 years ago with DCIS and had left side mastectomy and reconstruction, during the surgery a 3mm invasive hormone + tumour was also found. Sentinel node biopsy was clear so I didn’t have radiotherapy or chemotherapy but was put on tamoxifen for 5 years as a “Belt and Braces” prevention. 

This went on to cause my problems with womb thickening and polyps which led to the hysterectomy. 

However, I came off the tamoxifen for 4 weeks before surgery because of clotting risk and the surgeon said I should contact the breast clinic about whether I should go back on tamoxifen or nothing or an alternative post menopausal drug. I have always got on ok with the tamoxifen apart from the womb issues and I’m reluctant to change now. Wondered if other people have any experience of continuing or changing post hysterectomy? Nic xx

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Following on from my previous posts, I’m due to go in Friday for my hysterectomy. Getting a little anxious now but just really hope it doesn’t get cancelled as I want it over with! X
Hiccup
Member

Re: Tamoxifen and heavy bleeding

Thank you so so much Helena. I really appreciated your support when I was super scared and down. I'm in absolute agony but it's ok.......as you rightly said this is the best Christmas pressie I can ask for.

Thanks for the tough pants, I wore them today. I'm anxious now without tamoxifen my comfort blanket. But will get in touch with my breast care team. Damn this illness.

Merry Christmas and thanks again for your kind words through my panic. Angela x
ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Hiccup

 

Oh that is the best christmas, I know you have to get a treatment plan sorted, but thank god that was what it was.

 

Have an absolutely fantastic Christmas

 

Helena xxx

Hiccup
Member

Re: Tamoxifen and heavy bleeding

I respect doctors and I appreciate all they have done for us. The whole tamoxifen is a very grey area....it's NOT a good drug.. One day they will openly agree but as yet they are united in the tamoxifen front. The bitter pill causes so much damage. I'm taking a break from it and doing all my natural stuff and keeping a healthy diet. I totally agree with all you say. I'm gonna, get over this hurdle and review with both sets of consultants. Im so tired and relieved. Thanks again girls. The bleeding has been super scary and very painful.
Charys
Community Champion

Re: Tamoxifen and heavy bleeding

You know I kinda disagree with the 'not because of tamoxifen thing', but I realise I'm at odds with a fully qualified professional. I was told oestrogen being high results in fibroids growing and being more active, and that mine would disappear after the menopause. When taking tamoxifen oestrogen levels were certainly higher, according to my uterus, as they periods would double as heavy. Also others have been told that tamoxifen can cause thickened uterine lining. Ah well.....alls well....

Charys
Community Champion

Re: Tamoxifen and heavy bleeding

Brilliant !!!!!!!!!!!!!!!!!!!! You know, funny how life changes isn't it, so that we are delighted to find out there are fibroids LOL Thank goodness it is sorted before Christmas. x

Hiccup
Member

Re: Tamoxifen and heavy bleeding

Ladies, after a very difficult and painful morning. The results are fibroids. I've quite a few. I've to go back in on Friday for biopsy results and to discuss my treatment plan. Fibroids for my Christmas is one of the best gifts ever... . My Health. Here's to all your support and wishing you all the best health. Xxx
Hiccup
Member

Re: Tamoxifen and heavy bleeding

What were your results DizzyDee
Hiccup
Member

Re: Tamoxifen and heavy bleeding

Thanks everyone for your care and concern. I haven't stopped bleeding in over a month. I've had intermittent bleeds in the last 18 months. Very light and pink. I put them down to being a light period!!! That's my real concern. I've also got a swollen belly which I thought was down to gaining weight. And now this constant pink spotting and brown watery discharge. The prognosis is not great. But at least I will have more answers tomorrow.
Charys
Community Champion

Re: Tamoxifen and heavy bleeding

What an absolutely HORRIBLE thing to have to do on Christmas Eve I am so so sorry. Not entirely sure what they meant by 'not the tamoxifen', and how they can be so certain before even checking?! I had awful issues in the (ONLY) two periods I had on tamoxifen, they were literally a pint of blood loss each time. I can see why you are so frightened, but they WILL sort it, whatever the reason is, benign - endometriosis, burts large ovarian cyst/s or the like, or other gynae issues. I'm really sorry I can't be of more help to you, I'm not knowledge on that part of the anatomy (Helena has had very recent experience of tests, scans and gynae trouble) We will be thinking of you xxx

ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Hiccup

 

I know it is easier to say than do but try to keep calm. It is right that your consultant is getting it checked out but that does not mean it is anything ominous, with our history it is only correct that they get things checked out for us.  I

 

Sending you a hug and the tough pants so that we can all be there with you to support you.

 

Helena xxxx

 

tough pants.jpg

Hiccup
Member

Re: Tamoxifen and heavy bleeding

Hi ladies, I got severe pain last week then passed a heavy watery discharge. My periods have been all over the place and I think I've reported changes too late.....the gynaecologist done an examination and took swabs. She said it's not the tamoxifen that is doing this. So now I don't know what she means. I've to go for scan tomorrow and I'm terrified.
ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Hiccup

 

I have replied to Kiki about my experience.  I was the same had a small discharge/bleed and because of our bc diagnosis and being on tamoxifen they do not mess around in getting us checked out. 

 

With everything that we have been through with our bc diagnosis It is not easy to keep a rational mind, however I would say that following the scan and an MRI I had due to them not being able to do a hysteroscopy, the consultant was certain it was due to the tamoxifen causing thickening of the lining of the womb and they were right.

 

Let us know how you get on and I sending you loads of hugs xxx

ladybowler
Community Champion

Re: Tamoxifen and heavy bleeding

Kiki

 

I had a hysterectomy nearly 10 weeks ago now .

 

As a result of post menopausal bleeding was fast tracked, it was not possible for them to do a hysteroscopy on me due to surgery I had many years ago on my cervix so it was recommended that I had one as the lining of my womb was very thickened and I had a cyst on my right ovary. it turns out that it was tamoxifen which had greatly thickened the lining of my womb and I had a cyst on my right ovary, not necessarily connected to the tamo and I was given the clear from the tissue samples they took.

 

Helena xxx

Kiki2
Member

Re: Tamoxifen and heavy bleeding

Hi Hiccup,

Ive been taking tamoxifen for nearly 4 years and all the way through have continued having periods which are very heavy with large clots.  I’ve also had some bleeding between periods so have had two hysteroscopy procedures, both of which found s thickening of the womb (which can be a side effect of tamoxifen) and polyps which were removed and were benign. I also have fibroids which contributes to the heavy periods and as they have now found an ovarian cyst as well I have opted to have a hysterectomy in January. 

Try not to panic as I think these problems whilst on tamoxifen are quite common. There is another thread on here where several ladies have reported similar symptoms. 

It is worth asking the radiologist on the day as they might tell you what they can see, they told me.

Good luck, let us know how you get on,

Nic x

Hiccup
Member

Re: Tamoxifen and heavy bleeding

Hi ladies, I've been on tamoxifen on/off for the last three years. I have to admit I've struggled with it. Just recently I had a heavy period with clots the size of my hand and lots of fresh blood. I stopped taking tamoxifen one week ago and I have constant brown and pinkish discharge. I am absolutely panicking this is now cervical cancer. I've to go for a scan in one week. Has anyone else had similar problems. I'm so scared once again.
DizzyDee
Community Champion

Re: Tamoxifen and heavy bleeding

Thank you Lizzie have my appointment Monday 11th i have everything crossed. X
Lizzie
Member

Re: Tamoxifen and heavy bleeding

Hi Debbie, I'm two months in on Tamoxifen and still having periods. Like you I expected them to stop but guess it takes a bit of time.
Dizzy I hope your results turn out fine xo
DizzyDee
Community Champion

Re: Tamoxifen and heavy bleeding

Thank you for your comments girls. I rang BCC helpline and they told me to get any abnormal bleeding checked out just in case. My gynae consultant said the same thing alwaus get it checked out. He said I wasn't to worry as even if it is cancer they have caught it early. Its just it takes me right back to waiting when i was first diagnosed for the results. Can't help but feel a bit scared x
Sue C
Community Champion

Re: Tamoxifen and heavy bleeding

Hi Dizzy

I'm not on tamoxifen, but did experience heavy bleeding while doing chemo. The ct scan did show up an issue, so had a MRI scan and it turned out to be a large fibroid. Hence they put me on letrozole instead.

Sue xx

Debbie1964
Member

Re: Tamoxifen and heavy bleeding

Hi dizzy, i cant advise, as im only 3 months in on tamoxofen, but i have had 3 heavy bleeds since taking it, im just recording dates at the moment, as they say to report abnormal bleeding, and im so new in with this drug i dont no whats normal, i kind of expected periods to stop, but then it could be to early for me, i am gonna discuss things with my ongoligist on my next appointment, good luck with your results and glad your being checked out.

 

Debbie x

DizzyDee
Community Champion

Tamoxifen and heavy bleeding

I am looking for advice ladies. I have been on tamox since May 2015 all fine until June of this year. Since then i have had 3 very heavy bleeds (can't leave the house it gets so bad) in June September and most recently November. My periods stopped when i started taking tamox. I got referred to gynae and have had a trans vaginal ultrasound. Awaiting results but think they have found something on left hand side of womb. Has anyone had a similar experience could do with some advice. Thank you