Ca125, cyst, pain and flooding

[Endometri]

Hi all, I am 26 and was officially diagnosed last September with endo through a lap. I recently had a blood test which showed elevated levels of ca125. I then had an mri scam which they found a cyst bigger than 4cm and fluid in pelvis which I always seem to have whenever they do a scan...

My last few periods were very irregular and coming once every few months. I am currently on my period now and have been bleeding really heavily/flooding for over 2 weeks to the point where I'm having to get up in the night and changing clothes because I have bled through.

I just wondered if anyone else had experienced this at all? And whether they know what could be causing this? Obviously it is probably endo related but just wondering your thoughts.

Thank you! Take care xx

[Starry1977]

I bled quite heavily with a cyst. Has the cyst grown since your lap? Did they not remove any endo at the time?

[Endometri in reply to Starry1977]

Oh noo, sorry to hear. The cyst was only noticed a couple months ago on an MRI I had done, when I had my laparoscopy in September no cysts were seen but they did manage to remove the endo that was visible. Just still struggling with the pain and periods are even more irregular and heavier since I had the lap in September, and just seem to be getting worse as they go on. The pelvic/abdominal pains I get are not just on my periods also, they're constantly there and sometimes even worse when I haven't got my period...

[Starry1977 in reply to Endometri]

Hi I'm stage 4 and have discomfort (luckily not pain) all month long. However I have found the mini pill has lessened the bleeding. I'm still bleeding for a week but im not needing the toilet hourly. Have you tried any hormones to help?

[Endometri]

Oh okay, that's good. I tried a few mini pills and i was constantly bleeding with no break, doctor has recommended to try hormones so will see if this helps 🤞🏼

[lin1992 in reply to Endometri]

Wow, your story sounds so similar to mine...except I had a 6cm cyst (endometrioma) prior to my first laparotomy. Stage 4 endometriosis, they removed what they could from across my pelvis, freed bladder, but only drained cyst (couldn't remove as was stuck to my bowel as well as my ovary and needed a bowel surgeon there if were to remove apparently). So I still have a cyst which is filling up again and I'm on the waiting list for another lap (with a bowel surgeon there too) to remove as the fatigue is debilitating, and the pain is starting to become unbearable again. But I went straight onto the mini-pill after my first lap and I seemed to bleed continually for a number of weeks at some points, and I remember speaking to my GP and they just said it was normal! Thankfully after almost 2 years of taking the mini-pill every day (make sure you take it at the same time each day otherwise it's not as effective) my periods became much lighter and at some pints I almost considered taking pregnancy tests as I was so unused to go without a period for a few months at a time! I don't know if I was having true periods by then or whether it was just spotting. Since going back to my gynae/endo consultant he said I have doubled my dose of mini-pill when my periods weren't stopping. If only my GP had said that. I doubled the dose after that until recently where I've come off it as we're TTC. Once off the mini-pill, I found my period was heavier than ever...waking up during the night and in the morning in a pool of blood etc just like you. But I've been off it a few months now and periods are more manageable again...very heavy first 2 days but never last beyond 5 days. In summary though, I'd recommend sticking with the mini-pill and doubling the dose unless your doctor doesn't allow it for whatever reason. Persistence with it certainly does seem to pay off it seems and your periods can stop completely in some cases!

[Rainbow2468]

Hi there yes but I have two fibroids, i had cysts but they have now disappeared. My ca125 level was 55, a consultant who did my ultrasound and three different gynecologists said it was nothing to worry about as it has to be in the thousands to be of concern. I hope this helps sending you a big hug too x

[Endometri]

Thank you so much! Likewise x

[Booty42]

HiThe raised CA125 could relate to several things but the bleeding could be fibroids or endometrial polyp(s). I have had a couple of polyps removed which did cause intermittent bleeding and heavier bleeding on my actual period.

Completely different circumstances but my CA125 is raised (141) they have done 2 checks in last 8 weeks and it remains high, I have a suspected large endometrioma cyst on my ovary that continues to grow as shown on USS and CT. I have now been put on urgent 2ww surgical list after my case went to MDT and they decided I should have a total hysterectomy with removal of ovaries and fallopian tubes and cervix, as they think my cyst has a high possibility of being cancerous.

They have done numerous tests, scans and biopsies to find other reasons for raised CA125 to no avail so although it's not in the thousands I think everyone's case is different depending on full picture. I'm not on any HRT or hormones of any sort, I'm much older than you at 46 and still very pre-menopausal as my hormone bloodworks suggested and I'm very regular every month with my periods.

Good luck, I hope they find a solution and a plan you are able to work with and that you can get some normality back soon.

Take care x

[Saff21]

Hi, sorry to hear you are going through this as well.

I have large endometriomas on each ovary and i also have free fluid in my pelvis at every scan i have.

I used to have terrible pain all month plus extremely heavy periods like you have.

I have now got a mirena coil and was on desogestrel mini pill as well. I have recently stopped the pill but kept the coil. My periods are now very light and only uncomfortable. Definitely more managable while i wait for surgery to remove the cysts. Hope you get some relief soon!