thickening of the womb please help

[Stephanie Massey]

Hi

I have been on Tamoxifen for 5 years (aged 54), aged 48 when I was diagnosed with Breast Cancer.  Anyway I reported the bleeding as my periods had stopped and I was immediately sent for scans and a hysteroscopy.  This all showed a thickening of the lining of the womb but the biopsy came back normal.  The tests left me feeling stressed and then I suffered heavy bleeding for about 3 weeks.  That all cleared up and settled down.  However I have intermittent bleeding ever since, not regularly but about once every 4 months or so.  This has been happening for about 2 years and I finally plucked up the courage to report it as I have recently been told I am post menopausal.  I had been putting it off because I knew I would have to undergo all the tests again.  Anyway long story short, had another scan and biopsy and all normal but my Gynae has decided to give me a full hysterectomy to prevent these problems reoccuring again.  I understand that it is totally normal to have thickened womb lining with Tamoxifen but the stress you have to go under whilst waiting for results is upsetting.  My point is, if you have any spotting of any kind once your periods have stopped and you suspect you are post menopausal get it checked out!  If you have thickened womb lining get it checked regularly or opt for a hysterectomy.  I wish I had pursued it a year ago instead of being a baby and thinking its probably all right.  Luckily it is allright but I could have saved myself a lot of anguish doing it sooner.   Hope this helps...  

[ruthu]

Thanks for posting that Moser. x

[moser]

Ladies, just to add my story which some of you may find reassuring. Was dx with considerable thickening of womb after 2 years on tamox . I was then given a hystertoscopy (by this time convinced by very gloomy gynae consultant that I had cancer of womb) but in fact everything completely clear and then told that thickening itself no problem. Anyway, have had no problem in that direction since. Hope all turns out well for you all. xx

[ruthu]

Hi all,
Can I jump in on this thread? Just back from a ultrasound of womb/ovaries. Had mirena coil removed back in September - had been fitted to sort heavy periods. Periods started straight away and since starting tamoxifen in October have fallen into a 32 day cycle and quite heavy. 3 weeks ago had a really heavy bleed 16 days after start of my last period. Also been getting lots of ovary pain. Gp referred me for a scan following that bleed. Today they did ultrasound and internal ultrasound. Ovaries look fine but womb lining thicker than should be 16mm. However she said it wasn't showing signs of cysts/hyperplasia. Said can't tell if that's just how thick my lining is or if it's the result of tamoxifen. Sending report to gp/Onc. Confused about difference between thick womb lining and hyperplasia. Also wandering if they'll do anything or just monitor me - should I push for gynae appt? Bit worried it's thick after only 4 months on tamoxifen. Any thoughts anyone?

[Gardengate]

Hi Poppy333

i had similar experience. After scans I was also told had cyst, they left this 3 months then rescanned to see if it had disappeared as this is quite normal. My cyst was still there and had changed to multiseptated (no idea what that is). I was referred to gynae who made the decision to remove the cyst, ovaries and Fallopian tubes. The decision was taken as a precautionary measure. I had the op 3 weeks ago and have to say feel better than I have for months.

[poppy333]

Can I join in
I'm having such a tuff time at the moment. I lost my mom 2 months ago, n I worry it will happen to me
I've had my bone dentist scan n that shows thinning, but vthats fine, arimadex I suppose
Bloods show hormone levels are post menapausal
No periods in 2 yrs, since cemo number 4, armidadex as had tamoX for 6 months and hated it

Been havin distarge and like a period pain , had a trans ultra sound, n shows I have couple of small cists on my ovaries, and a thickening
. panic, , , I convinced its not good, n now await a gyno appointment

I have had a copper coil sine DX, and my onc on Monday told me to Gert it removed, as since the weekend I've had actual bleeding, and severe pain, like ovary pain.
So this morning I had the coil removed by the doc, then mentoned about the gyno appointment will do a biopsy. N there can sometimes be womb cancer

I'm now a wreck

[Guest user]

Hi Ladies
did you have tenderness with the thickening of the womb, my lower tummy area feels tender?
I don't have periods as have a coil fitted, but have had a couple of odd bleeds, but this happened occasionall before Tamoxifen!
thank you xx

[gaybar1969]

hi seen my gp today. there is thickening of the womb. he is sending me for a pap smear, and should been seen in the next two weeks. thanks for all you help and advice xxx gaynor

[moorcow]

Hi everyone,
just wanted to add my twopenneth - I know its hard not to worry about it being another cancer but apparently it is really really usual to have womb thickening with tamoxifen. I actually had it before all this cancer stuff started and had a range of treatments, bit like you outline Revcat - at one point I had legs akimbo , camera in uterus and was looking at screen with surgeon discussing what to do - quite odd but nice to take part in the discusions!
Anyway I found taking arnica after the proceedures really helped, and don't take it before cos it can increase blood flow which you don't want. you can get it in pill form from boots
and well done for having an onc who warns you about symptoms, mine didn't, but also for following up your symptoms, its so hard as we walk the tighrope between health awareness and health overanxiousness!
all the best to you with your various proceedures

[RevCat]

Hi Tors,

I am not sure which procedure you are waiting for. I've had what is called a 'transvaginal ultrasound' scan when they basically have you lying in the 'smear test position', feet in stirrups and insert a small ultrsound probe which they then move around to obtain images of your womb and (if they can find them) ovaries (they found one of mine!). I was warned it could be uncomfortable, but it was fine - far less ugh than a smear test.

I am now waiting for hysteroscopy, which is where they insert a speculum, locate and 'clamp' your cervix then insert a small 'telescope' which is about 5mm diameter. Evidently they sometimes have to use dilators, especially in people who have not given birth vaginally. This allows them to look at the lining of the womb properly and to check where the tubes come in etc. This would allow them to spot any polyps or other oddities. In my case they are going to take biopsies, as without doing so they can't be sure if the cells are just thickening or if they are dodgy. Practice seems to vary between hospitals, some do it under general anaesthetic (mine are), some with sedation and some with 'here take a couple of ibuprofen and wait 20 mins'. I think there are many factors that determine this, including whether or not they want to take biopsies, whether you have had vaginal births, what they happen to prefer. It will be done for me as a day case, and takes about 30 mins in theatre.

I hope that helps but does not scare you.

[tors]

Hiya everyone,

I've been referred for a scan too to check the lining of my womb. My periods came back a good 18 months after chemo had knocked them out, I was 36 when I was diagnosed. My onc said after year they were now unlikely to come back, but they did. However, they were quite heavy and I only had 3 in 7 months, but they did feel very much like my periods pre dx felt. I am on tamoxifen too and so contraception wise the best plan was the non hormonal coil. I had it fitted a few months ago, then 6 weeks later I had the heaviest, clottiest most awful bleed/period ever. I couldn't go out for three days as the flow was so heavy. Heavy bleeding is a side effect of the coil for some women, so I've had it removed, but I've got to go for the endometrial scan because of my history with breast cancer and taking tamoxifen. What does the scan entail, does anyone know? Anyway, just thought I'd share that. I'll bump up a thread from ages ago which. Started about whether your periods returned and when as it's an interesting read In the context of these issues. X

[Ali_H]

Thanks RevCat yes that does help. I hope things get sorted for you, and for Gaybar too. I'd never thought that one dx (for BC) could lead to so many other issues, I guess ignorance really was bliss. Amazing what the body can do, and what science and medicine can do too.

[gaybar1969]

hi revcat. i have not had a period for over 2 years due to being on zoladex and tamoxifen. finished the zoladex in january 2012. my gp said because of my age and not having the zoladex my period might return. a month ago had a very slight bleed with period pains. its a month now since that happend and again got the period pains. was wondering if i do have a bleed in the next few day. would this have cause the thinkening. thanks again for your help xxx gaynor

[RevCat]

Hi Ali,

When I started on tamoxifen my onc. said 'given your age (then just turned 48) it is very unlikely your periods will return.' He also said 'any bleeding or spotting needs to be checked by your GP'. Fast forward 18 months, 22 since chemo knocked everything out and bleed happens. GP says 'it's over 12 months since the last period, so we treat as post menopausal'.

So I think the rule of thumb is... bleeding, epsecially if spotting, dark, brown, clotty or 'odd' go direct to GP and get it checked. If < 12m from last period may be things starting up again so may well be told to 'wait and see', also thickening in under 12m not very likely. If over 12m will probalby refer you to gynae people... two week rule in England & Wales, 'ordinary' referral in Scotland. Hope that helps... and hopefully it won't happen to you anyway.

[Ali_H]

I've just started on Tamoxifen, and almost as an afterthought at the end of the consultation my onc said "watch out for any bleeding from the vagina". I'm 45, no sign of menopause till first chemo knocked them out. So, if I do bleed, rather than assuming it's a period coming back, would it be something to check out? (sounds like I'm looking for trouble in advance, but I'm not - just trying to get to grips with this strange new world of health issues!)
Thanks ladies x

[RevCat]

Hi Gaynor, yes, this Tamoxifen effect can occur after two years... indeed I think I read somewhere that it was typically around two years it tended to be spotted (but maybe I dreamed it? I read so much stuff!). I had been taking Tamoxifen for 18 months when I had a bleed, and six weeks later was told I had the endometrial thickening; the gynae people seemed totally unsurprised by this. The extra tests you - and I - are waiting for should help them to rule out any nasties and determine the best treatment options.

Take care, and feel free to pop in on the other thread too!

[gaybar1969]

hi revcat thanks for taking the time to get back to me. can tamoxifen cause thickening of the womb after 2 years? i am really worried at the moment. just hope it nothing to do with the dreaded c again. let me know how you get on and for putting the other threads on xxx gaynor

[RevCat]

Hi Gaynor,

I spotted your post as I started a similar thread just a couple of days ago! Tamoxifen can cause thickening of the womb, which seems to be what has happened to me, and I am awaiting hysteroscopy and biopsies to further investigate before treatment (about a six week wait where I am). If you want to read what people have told me, the thread is here: http://www.breastcancercare.org.uk/community/forums/undergoing-treatment-hormone-therapy/tamoxifen-induced-endometrial-hyperplasia

As you will see if you read that thread, my situation is a little different from yours (I have not had the dreaded zoladex) but hopefully some of it will be helpful for you.

Sending you big hugs.

[gaybar1969]

hi all i put a post on here a few weeks ago. i am on tamoxifen and have been since march 2010. a few month later srarted on zoladex which stopped my period. i had 19 out of 24 injections and stopped them january 2012. a month ago a had a slight bleed, which lasted 3 days and very light. i went to my gp. he thought it was my body starting to have periods again but wanted me to go for a scan. i went for the scan today and i have thickening of the wonb. is this down to the tamoxifen or not having a full period for over two years. i have to go for futher test. has this happend to anyone else. really worried. any advice would be grateful thanks gaynor