I've been bleeding vaginally for over 7 months. Bright red blood in light amounts but every single day and every time I wipe and it's on my underwear. My bladder and bowel habits have changed the past 4 months, incontinence and urgency with both. I've started Norethisterone to stop the bleeding but am still bleeding the same as I was before. Am overdue a smear and unable to have one due to the bleeding. GP doesn't know what is causing the bleeding so is sending me for an ultrasound. Has done CA 125 bloods that came back normal.
Has anyone been in the same boat ? Or is experiencing the same thing ? Just need some support as I hardly have any.
Hi Mpop1504 and welcome to our group.
I’ll start by saying that no-I haven’t experienced the same thing but I like to try to welcome all new members to the group.
That’s a very long time to have daily bleeding without any proper investigation, so I can understand your concern. Although you are overdue for a smear test, that is no reason for you not to have had this checked out properly. The CA125 test is not in itself a diagnosis of anything specific-an abnormal result means that there is something in that area which needs checked out as it indicates there is something which could be inflammation in the pelvis or have another cause, but your normal result is good as a starting point. The smear test is also not a diagnostic test-the primary check with it is to see if you have the hpv virus and if you you do, the test is then for any abnormal cells. If you don’t have a positive test for hpv, then there is no further testing.
Do you know if your gp has referred you urgently for the ultrasound? If not, you may be waiting for a while to get this. This scan would be taking a look in more detail, but again doesn’t give you a diagnosis of anything but it might show something that needs further checking. Has your gp ever examined you, or has that not been possible because of bleeding? When I was bleeding my gp did examine me and referred me to a gynaecologist and I was examined again by him-while I was bleeding. So it is possible to have an examination while you are bleeding.
In your position, I would recommend checking if the ultrasound referral has been made as urgent, and if not then I’d try to get a referral to see a gynaecologist. There may be a straightforward explanation but as you are posting in a cancer group I’m presuming this is your concern. Did you tell the doctor about the changes to your bowel and bladder habits? Do you have any pain at all with the bleeding-any pelvic pain or pain after sex for example?
I hope you can get to see a specialist and there is a less sinister reason for your bleeding than cervical cancer, but it definitely needs to be ruled out. Please keep in touch and let us know how you get on.
Sarah xx
Hi Sarah, thank you for replying I appreciate it. I've been examined by a gynae for something unrelated a few months ago and she didn't mention anything bad. The gp then said if I had cervical cancer the gynae consultant would've noticed it at the examination. The GP doesn't seem to see any reason as to why I would be bleeding especially for this long. I haven't noticed pain after sex and get odd cramps in my pelvis now and again but the thing I notice the most and the only way I can describe it is that I have like an awareness of my pelvic area all the time. As if my mind is constantly noticing it. I had HPV when I was 18. So I don't know where that leaves me really.
She didn't say whether the scan was urgent or not. In all honesty I feel exhausted all the time and am not anemic, am constantly bleeding, so fed up of wetting and soiling myself and running to the bathroom. I've debated ringing 111 and asking to be seen as I feel sort of fobbed off.
I've posted here as yes, I'm concerned it's cancer. These symptoms are just so unusual for me and it's been going on for so long I just feel something isn't right. My family don't really listen, the GP I feel has no urgency about any of it. I don't know where it leaves me.
Hi again Mpop1504
Your gp really should not have said that if you had cervical cancer it would have been spotted by the gynaecologist. Some cancers are tiny, and can’t be seen except under a microscope, so it’s still possible to have cancer that a gynaecologist can’t actually see. The only way to diagnose cancer is through a biopsy.
If you had hpv when you were 18, you still have it as it can’t be “cured”. It can however lie dormant, sometimes for years and then become active again, especially when our immune system is low. It can be difficult to get a sample of cervical cells while you’re bleeding so you are in a bit of a catch 22 situation at the moment.
No wonder you are concerned and it is a real red flag to be wetting and soiling yourself in addition to the bleeding.
I’m not sure there would be a benefit in phoning 111 since you currently have a scan scheduled, and they are likely to tell you to go back to your gp. It’s disappointing it has been marked as routine and not urgent-can you check with your gp what the waiting time might be for a routine appointment?
We are always told to see a doctor if we have symptoms which concern us, as if it is cancer the sooner it is detected the better but I’d agree your doctor doesn’t seem to have any sense of urgency, despite what you’re going through. I can appreciate you are exhausted with it all, but would encourage you to speak up and advocate for yourself if you can. This must be very difficult to live with and you need to get some answers.
If you can’t get further with the gp, the other option is to pay privately to see a gynaecologist if you can. At least you would get some answers.
Sarah xx
I've learnt to self advocate. There is no room for courtesy and patience. I bled for x6 months, was fobbed off with reasons....even a examination at the Surgery and a subsequent referral still due a blank. Eventually , l saw an experienced Consultant, and everything was notched up a gear. With a rapid biopsy. Outcome? I finally received the medical care l needed....but it took x6 months, and l am unsure as to whether my outcome would have been different, had it been addressed six months earlier.
Don't hesitate. Pound on those doors now; it's about your body.Get the attention you require....
Is email the only way to contact your surgery? I’ve used this system myself with my surgery and sometimes get an answer within a few hours but other times I’ve waited-once for 2 days by which time I’d been taken by ambulance to hospital.
Please don’t be fobbed off today. Your symptoms should be of huge concern to your gp and you deserve better.
Sarah xx
Good. Go back to your Surgery and alert them to the slow progress of your case and ask them to support you with a prompt to the Hospital.
Once l had bombarded them with questions, it made them pause and look at my notes again. Once stirred to action, everything moved rapidly.... a return visit to hospital and Surgery proposed within a few days. Within x3 weeks l was under the care of a specialist and operated on by an Excellent Team. I cannot fault them. I dread to think what may have happened, had l sat patiently, asked no questions, and waited.
Stay strong and positive; those two things are key. Petrified? Of course l was, but l took control and felt 100% better for doing so.
You've got this.
Best wishes
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