Feeling worried

[lizalily]

Been to the doctors this morn to discuss scan results. Have confirmed the same as last year endo cysts but the high ca125 test . Am now referred to a gynaecologist to check further they want to rule cancer out I'm totally in a panic yet again , she won't give me the pill as I'm referred now I don't know what to think . She just sent me for another ca125 test and my folate she im a little anamic but not low enough to treat . Sick of all this now. When I read people's awful

Symptoms on here . I don't get it anything like that . Help some advice I need . Anyone else in a similar situation x

[squidgy]

Hi there, can totally sympathise I've had suspect cysts and very high CA125 readings. Yes can be a marker for cancer but as if Endo doesn't give us enough to deal with and worry about it can give high CA125 levels. So it could be all ok and it is the endo causing the high readings. I know this will still not help ease your worry until been investigated further, but I wanted to let you know you are not alone and it can be blooming endo and not cancer. Wishing you all the best x

[lizalily in reply to squidgy]

Hey thanks for the message . Do u have cysts too? What treatment have u had ? X

[squidgy in reply to lizalily]

Apologies for my late response! Yes I have cysts. They keep recurring. The really big one they couldn't fully remove as too attached to womb and bowel. The one on my left burst whilst operating so they had do drainage and damage control. So I still have the remainder of the big one on my right and another there now too as well as my left. They are a blooming pain. I hope you get some answers soon x

[Geordie-Girl78]

When I started with symptoms the first ca125 blood test reading came back at over 100 I think the normal is between 30-35 of course the first thing I did was Google it!! Please try not to worry it's very common to have a high reading with Endo. Did they tell you how big the cysts are?

[lizalily in reply to Geordie-Girl78]

My reading was 108 yes have 2 cysts one is 5 cm and the other 4 cm

[amy-x]

Hey, I totally sympathise with you, I went through this earlier this year where I went for a blood test and my ca125 came back high my doctor said the same to me, as soon as the c word was mentioned I went into panic mode. It is good that your doctors are testing to rule anything out but endometriosis can cause a higher ca125 which was what was causing mine, I also had a large endometrioma cyst on my ovary which also contributed. Try not to worry too much until you know for sure what's going on, it may be easier said than done but know you're not alone, wishing you all the best! X

[Geordie-Girl78 in reply to amy-x]

Hi there - have you had your endometrioma removed?

[amy-x in reply to Geordie-Girl78]

Hi, yes I had a laparoscopy in April to remove as much Endo as possible and to drain the cyst x

[Geordie-Girl78 in reply to amy-x]

Hi amy - how long did your recovery take? I'm having my first excision surgery next month and cysts removed from both ovaries. Has it made a big difference to your pain? Thanks x

[amy-x in reply to Geordie-Girl78]

Hiya, I've had two laparoscopys so far, full recovery took about 5/6 weeks but I was back at work after 2/3 weeks. It made a lot of difference to the pain it really did help as before my ops I was getting a lot of bowel pain and there were times where I couldn't sit down at all because of the pain. Hope everything goes well for you x

[Geordie-Girl78 in reply to amy-x]

Thank you - really appreciate your replies xx

[lizalily in reply to Geordie-Girl78]

No

[lizalily in reply to amy-x]

Awh thanks for that . How big was your endtrioma? What treatment have u had ? X

[amy-x in reply to lizalily]

Heya, at the time of removal it was 10cm, thankfully they were able to drain it safely I'm currently trialling the depo injection in the hopes that it keeps my Endo under control but there are lots of options, I previously tried the mirena coil but it didn't agree with me so had to have it removed x

[lizalily]

Oh ok mine are 5cm and 4 cm . Ye I've heard the cool not good. I want to go on the pill as heard it's very effective x

[amy-x in reply to lizalily]

Yeah there are lots of different pills you can try too if one doesn't agree with you there are others you can try which is good x

[lizalily in reply to amy-x]

Ye I'm hopeing I can . I asked the GP and they wouldn't give it to me cause I've been referred now . I remember when I used to take it . It really helps with pain and heaviness. X