venting post - vaginal bleeding

[CoCoLuna11]

I have not been around this site for a while as I have been cruising along not really thinking about CLL. But last week I experienced some post menopausal vaginal bleeding, which has me scared to death! I am supposed to leave for a trip with my daughter to Italy today and I am so preoccupied I don’t know if I’ll even be able to enjoy it. I have tested negative for any infections and I had a pap in March that was fine. All the doctor has seen is some abrasion and atrophy. I have an ultrasound when I return in September and depending on results may do a biopsy. My sister had uterine cancer so of course I am thinking the worst. I’m just so mad and scared 😢

[Rpshe1]

I’m sorry you’re dealing with this before a lovely vacation. Breathe…enjoy your trip! Take comfort in knowing that you’ve done everything possible with preventive care and a 4, 6, or 8 week hiatus to have some much deserved fun time with your daughter will do wonders for the soul.

[CoCoLuna11 in reply to Rpshe1]

Thank you! I’m trying to breathe. It’s just such terrible timing. Not that any time for these things is a good time. I hope you are well! Just had a phone appointment with Sharman a couple weeks ago. At least lymphocytes are still good 😊

[SofiaDeo]

Abrasion on atrophied tissue can cause some bleeding. Even the atrophied tissue can occasionally bleec. Have you used a bathroom in a public place with rough tissue? Women can have intermittent spotting until well into menopause. Make an appointment to be seen after you get back, and go enjoy your vacay! Chances are it's nothing major, and doing the appointment when you get back will verify that. Bleeding may be the most common sign of many gynecological cancers, but most bleeding is caused by other things. Don't ignore it for years, but don't worry about it if you can help it. It's tough when one has a family history, hard to not react, though.

[CoCoLuna11 in reply to SofiaDeo]

Thank you SofiaDeo. Its origin seems to be more internal rather than external. I’m hoping I am just showing more signs of aging 😊 or something else on the list of things other than cancer! I really don’t have any other symptoms.

[AnneHill in reply to CoCoLuna11]

My aunt had bleeding and it was a polyp. I always have something wrong when we are going away. Obviously There is nothing more you can do. You have done the right things and will be checked out when you get back. Italy is beautiful. We have been to Italy recently. Have a lovely time, Anne uk

[CoCoLuna11 in reply to AnneHill]

Thank you so much Anne!

[Newdawn Administrator]

Are you still on Acalabrutinib CoCo? I’m wondering if that could be implicated because Ibrutinib certainly caused an an abrasive effect on my bladder which resulted in blood spotting in my urine. I also had occasional blood spotting from my teeth and nose and it was attributed to the action of the Ibrutinib.

Post menopausal issues can of course cause reduced hormones and dryness which can result in irritation. Low immunoglobulins can also be a culprit in terms of protecting the mucosal tissues. Just throwing ideas out because you’re obviously worried but there any many non sinister reasons for ‘spotting’ especially given our additional issues.

Try to park your worries and have a lovely break. It would be a shame to spoil the time away with your daughter. ‘Abrasions and atrophy’ sound like the culprits and a vaginal cream might help in the interim (one without hormones).

Have a lovely time in Italy 😊

Newdawn

[CoCoLuna11 in reply to Newdawn]

Thank you so much for your reply Newdawn! I am still on acal. It has been about a year and a half. I also get ivig infusions every 6 weeks. Going to do my best to take that to heart and try to enjoy. I appreciate you!

[CycleWonder]

I had vaginal dryness which resulted in some bleeding. This was due to the lack of hormones after menopause. It’s not uncommon. So enjoy your vacation and let your medical team worry for you!

[CoCoLuna11 in reply to CycleWonder]

Exactly what I need to hear - so reassuring that other have experienced this for more common reasons. Thank you!

[Blue2018]

Hey lady keep your HEAD up try to stay positive ❤️ I know it's easier said then done put HOPE is all we have in our Situation!!! Blessings always 🙏🏽 ✨️

[Jevotchka]

Hi CoCoLuna11,I had to visit my Gynaecologist 2 weeks ago for same reason - I was freaking out mentally fearing the worst and was so relieved when I was told that it was nothing sinister but due to atrophy due to lack of oestrogen and age (I am 73 and stopped Anastrozole this January after 11 years prescribed after breast cancer). I have been prescribed Estradiol vaginal tablets and reassured that the amount of oestrogen is miniscule and vaginally poses no threat to a recurrence of my former oestrogen based breast cancer . My Haematology team who were my first panicked call said that there was no evidence of vaginal bleeding being associated with Acalabrutinib which I have been on now for 3 years .

Enjoy your holiday!

[CoCoLuna11 in reply to Jevotchka]

Good to know- thank you! I am 53 but I think my estrogen levels need to be checked.

[Lady_Lymington]

Hi there. I started Ibrutinib March 2020, after a few months I developed heavy vaginal bleeding(I was also on Tibolone HRT). I stopped the Tibolone immediately, and after all investigations which were negative, the medics came to the conclusion the HRT and Ibrutinib together were the cause. Suffice to say after several weeks the bleeding stopped. Eventually I stopped taking Ibrutinib due to other adverse effects, I restarted Tibolone and have remained happily on it since. It must be a very worrying time for you. I do hope all goes well for you.

[CoCoLuna11 in reply to Lady_Lymington]

Thank you! Will definitely be asking my doc about that possibility with acalabrutinib.

[difor29]

I had the same thing and it turned out is was some thickening of the uterine wall. All I had done was a D&C and all was good ❤️

[CoCoLuna11 in reply to difor29]

Oh, thank you! I am feeling a little less worried.

[Palmetto]

My take is quite different from many here (It is my husband who has CLL). I was diagnosed with endometrial cancer last year. Would like to speak through messaging if you are willing.

[Newdawn Administrator in reply to Palmetto]

Hi Palmetto,

I don’t think any of the posts intend to suggest this shouldn’t be checked out for something more serious but hopefully CoCo is now in Italy with her daughter on vacation and can ‘park’ this concern for a few days until she returns.

Best wishes with your situation.

Newdawn

[Palmetto in reply to Newdawn]

I don't mean to alarm. My situation is good and cancer free. But I could have waited too long because I ignored symptoms and blamed it on something else.

[Newdawn Administrator in reply to Palmetto]

We do all need to be constantly aware of potential issues Palmetto and thankfully, CoCo seems to have follow ups arranged on her return.

Glad to hear you’re now cancer free 😊

Newdawn

[CoCoLuna11 in reply to Newdawn]

I realize that is the other reality and I didn’t hesitate to schedule all the appropriate tests. I’m glad to hear that you are cancer free Palmetto and there is still hope should it turn that direction.

[Miller1960]

Hi hope you’re enjoying your trip to Italy with your daughter. Sorry you had a scare before you left. Sounds like you did all the appropriate things, so enjoy your special time with your daughter. The mind can really take over sometimes.

😎miller1960

[CoCoLuna11 in reply to Miller1960]

It sure can- thank you!

[Vlaminck]

Don't worry, if you can help it. I just had same thing a week ago, freaked me out, but then seems to be just that haven't been using my estrogen cream as often as suggested but nonetheless gonna have a sonogram in few week. Was it just vaginal and was it fresh (pink), consistent with abrasion?

[CoCoLuna11 in reply to Vlaminck]

Sorry for the detail (I’m assuming anyone who might flinch at the topic would have already swiped by, though)….I’m not sure how to determine exactly where it’s coming from but not from urine. One time there was a small amount of bright red/fresh. The rest is very minimal pink. It does help, thank you!

[Vlaminck in reply to CoCoLuna11]

Have fun on your trip! Italy is my favorite country to visit!

[CoCoLuna11]

Thank you all for the reassurance! I am on the last leg of my series of flights to Milan. I am so grateful for all your comments and feel a bit better going into my vacation. Hopefully, I can put it aside for a bit now 🤗

[mrsjsmith in reply to CoCoLuna11]

Coco just been reading your post and I wonder could the bleeding be caused by stress ? A while back I spent a very stressful month working in China and well past menopause I started bleeding on the flight. Complete nightmare with all my white linen in a hotel in a country where I didn’t speak the language. It stopped after a couple of days so I always assumed it was extreme stress.

Enjoy Italy and like Vlaminck it’s my favourite country.

Colette

[CoCoLuna11 in reply to mrsjsmith]

Colette- I’m so sorry you went through that! I did read that that can happen. I didn’t think I was stressed until now but who knows if I have been carrying some level of stress around lately.

[mrsjsmith in reply to CoCoLuna11]

Thank you and it’s all in the past. Enjoy the wonderful shopping in Milan, especially the shoes. Now those were the work trips I did enjoy.

I do think we also get more stressed as we get older. I said to a friend last week I was used to traveling around the world on my own but on a recent train journey from London to Sheffield I found I hated the crowds.

Colette

[AR0613]

I have recently had the exact same issue. Here in the UK I had an ultrasound scan (inconclusive) followed by an MRI and have been reassured that everything seems to be OK. My gynaecologist wrote in her report that Ibrutinib could have contributed to the bleeding episode…. Like you, I assumed that these symptoms ‘at a certain age’ always mean something bad - but this is not the case it seems. I hope you are having a fabulous holiday and wish you all the best.

[CoCoLuna11 in reply to AR0613]

Thank you so much!