How common is abnormal uterine bleeding with endometriosis?

[Albeon]

Hi just wanted to ask this quick question as I'd really like to have a better idea of how common abnormal bleeding, as in bleeding for a long time without fully stopping and at times outside of your period, is in endo. Asides from the pain this is my main symptom and concern and as I'm not diagnosed I'm not sure what to make of it as I've been told that it's not a typical endo symptom?

[Hidden]

Hi,

I haven't been diagnosed with endo (as of now, since I havent visited a doctor yet) but this happens to me as well! My period ended 5 days ago and i've bled very lightly for the last 4 days since then. How heavy is your bleeding between periods?

It's definitely worth mentioning to your doctor as it could be a sign of something like an ovarian cyst or other issues- but it could also be totally normal so don't stress too much.

[Albeon in reply to Hidden]

Thanks for your reply. My abnormal bleeding started over a year ago as well as a sudden increase in the amount of pain I get. I used to only get pain around and on my period but now I have some degree of discomfort or pain in my pelvis all month round and it just gets a lot worse when I'm having a period or technically withdrawal bleed as I'm on the pill now. I take the pill 3 month's worth at a time before breaks and that has helped to stop the bleeding most of the time, although sometimes I've continued to bleed every day despite taking the pill. Outside of expected bleeds the bleeding isn't very heavy but is continuous every day without stopping. It'd also usually dark in colour. Can you describe yours as similar? It's OK if you don't want to. I've had a basic ultrasound and a colposcopy (to check uterus ovaries and cervix) both of which found nothing abnormal. The gynae said I can have a trans vaginal ultrasound but as far as I'm aware these issues aren't likely to be visible on scans.

It's just really distressing to know that I don't have regular bleeding patterns anymore and the fact it's accompanied by pain is worrying especially since I'm only 28,it started when I was 26.

[Hidden in reply to Albeon]

My bleeding is very very light as well as light-colored most days, but it is darker colored on the days that it's heavier. I started bleeding abnormally around the same time my pain increased too, and I also feel pain/discomfort almost daily. I hope you get some answers soon! I've heard the only way to know for sure if you have endo or other issues is a laparoscopic surgery as other tests seem to miss these things, so don't assume nothing's wrong if all tests come back normal. Bleeding all the time isn't supposed to happen, so stick with it until you find out why it's going on. Best of luck!!

[Albeon in reply to Hidden]

Yeah it's difficult when you don't know what it is isn't it! It's good advice to keep going until you have answers because if your symptoms are significant then they need to be addressed really. I hope you get answers too thanks again for your posts.

[Noodle1984]

Do you have light bleeding or heavy? My Endo specialist said that typically the heavy or constant bleeding is associated with adenomyosis. I have both adenomyosis and endometriosis. Typically they can see adenomyosis in an mri if you do have it or specialized internal ultrasound by an Endo specialist will be able to tell as well. Because of this I have a merina and get a lupron shot ever four weeks which stops my period completely. If you’re not looking to get pregnant any time soon you may want to look into stopping your period as it will help with the pain and bleeding.

[Albeon in reply to Noodle1984]

Hi there. The continuous bleeding when i get it is fairly light but more than spotting. However, before I went on the pill my periods were becoming extremely heavy and I was staring to get random bits of bleeding throughout the month before it sort of didn't stop. From reading about it I suspected that it seemed more like adeno than endo, but I also get other symptoms like pain associated with emptying bladder and bowels, and afterwards, which I believe is more endo related? It's hard to say without actually having an investigation. I asked them for an mri and they said they'd refer me for trans vaginal ultrasound after I had a regular ultrasound last year that found nothing wrong. I haven't been referred to a specialist in this area though it's so frustrating because it's the sort of thing that requires specialist attention the majority of the time.

It's good that you found a treatment to really help your symptoms and thanks for sharing it with me ill keep it in mind. Thanks again.

[C2691]

I haven’t been diagnosed with endo though I have many of the symptoms. I go through phases of abnormal bleeding. Longest I’ve gone is 9 months non stop. 😖😢one of my many symptoms

[Albeon in reply to C2691]

That's awful, have you have any treatment to try and control the bleeding like the pill or anything? I'm just taking the pill 3 packs at a time before a break. Sometimes I still bleed outside of breaks but it has helped reduce that and the pain which was incredibly bad before the pill took effect. There are other stronger treatments too if that doesn't help.

[C2691 in reply to Albeon]

Any pill I’ve tried makes me bleed extremely heavy and pain even worse. I’m scared to try any more. Feel drs have given up on me by this point so just have to deal with it. I’m not having the continuous bleeding at the moment. Just long unpredictable periods that are still horrible but I’m getting a small break every now and then.

[Albeon in reply to C2691]

That sounds really difficult, so the pill makes you bleed even more? Did they try you on a different kind of pill or try persisting with it for a while? I know it took at least 4 months to see some improvement for me (with mircogynon) and to be honest it took about 10 months of being on the pill for it to control the symptoms more effectively. The pill isn't for everyone though, and ultimately whether it helps or not it only reduces the symptoms and doesn't solve the root problem. I hope that if your symptoms are troubling you, you do go back and tell the Dr. I know that sometimes it feels like you're not getting anywbere but you deserve to have your problems addressed.