Endometriosis CA125

[Sammymummyof4]

Hi there
I have extreme endo and also two or more complex (bleeding internally cysts to my ovaries ..These have been removed about 8 months ago..But they have grown back to be much bigger and I am in so much more pain..I am on a heck of alot of meds ie tramadol zapain and 3 other type of pill one being a very high ibuprofen ..I have to go back as they want to remove my womb now,as they just cant go back in and remove and the endo has caused so much damage..My worry is,I have just had another CA125 teat and I thing it was raised to 36..Not a big deal really as I think this may be normal as I am bleeding internally (So my doctor has told me) I wonder if this is correct & If anyone has this type of cyst But surly they should have stopped bleeding by now,over a year this has been going on..I have a mirena coil fitted and on scan they were not able to find it..I am only bleeding a small amount,but this is from the cysts themselves Could the cysts be hiding the merina..So many questions as I am so confused ..And just want answers ..Thanks in advance for any help and information Kind regards

[Junip]

I have stage 4 endometriosis and have had complex endometrioma cysts, one of which was the size of a grapefruit and destroyed my left ovary and Fallopian tube when I was 30.  I also had them rupture in the past which was excruciating. My CA125 levels were always around 35.  My endo caused infertility and egg quality issues so after 5 unsuccessful IVF cycles with my own eggs I had success using an egg donor. I often worry about reproductive cancers but they will not do a hysterectomy. I had melanoma at 30 and just feel like I am higher risk for other cancers.  Endo stinks!

[old_before_my_time]

Yes, the CA125 is not accurate at diagnosing ovarian cancer. I had a large complex ovarian cyst and my CA125 was normal but a friend had the same type of cyst and her CA125 was over 1000. Both our cysts were benign but unfortunately, both our surgeons removed all of our organs anyway.

I really feel for you because there is no cure for endometriosis. The symptoms can continue after hysterectomy and ovary removal although some women do get temporary or permanent relief. Hoping you get some relief soon!

[Sammymummyof4]

Hi there Alex, gosh I seem to be a moaning Minnie compared to you,my darling.Wow you really are being put through the mill at the moment. I feel awful now ..

I am not menstruating at the moment,as I am on monthly injections of Biotap < I think thats what its called.Well it sends me into early menopause .. I have a lot of bloating and extreme pain (Nothing compared to yours) But its awful I am unable to stand nor walk for short distances as its just so painful..They have have said they are taking it all away I have an emergency appointment at the hospital that my doctor has requested as its just becoming ridiculous now,and having small children 2 of which have special needs,so I feel I am letting them down too ..I am quite happy about the 36 scoring,but have been told this maybe inconclusive as the injections interfere with the outcome in some instances ..
Stay strong xx

[HVAC]

I would not worry about the CA 125 it has a lot of false positives, One point over 35 is no big deal.  With Cancer mine was three hundred.Yes the cysts could hide the Murina. When you say bleeding do you mean menstruating ? If you are bleeding internally you would be anemic.If so many women bleed a lot especially when they are starting the change. If you have cysts on both ovaries it is extremely rare to be cancer. It does happen but it is not common at all.With the growth of yours cysts if it were cancer it would be apparent by now.

If they are taking your uterus are they taking your ovaries as well? Also the cysts can cause that much pain and be benign. Ovarian Cancer until the very last is not painful that is why it gets overlooked. My main symptoms was throwing up because one of my 8 tumors was blocking my bowel and diaphragm pain because the cancer was on my diaphragm. I felt like the wind was knocked out of me and I would have contractions for two hours. After my surgery and chemo both those things stopped. No my only pain is from the chemo.

Good luck keep us posted.

Alex

Alex