Hi everyone,

went back to the doctors today for my never ending pain, its been affecting me mentally, physically, emotionally, you name it!! ive been SO fed up of doctors palming me off with different types of pain killers and being told 'wait for your lap' so i finally seen a GP that i thought would listen to me, and she has. she is sending me for the CA125 blood tests (thursday) and doing polocystic blood test at the same time. i am 💩💩 myself to say the least as i know IF it is endo these ca125 levels will be raised? (which the gyne thinks) even though my symptoms dont match. all this is doing no good for my anxiety. xx

15 Replies

  • I had my ca125 done several times in 2015 on my road to diagnosis and it was raised - 119/85/107. Normal is anything under 35.

    My understanding is that sometimes it can be raised with endo, but not always, so it's not definitive, just another tool they can use. However if you do have raised ca-125 it can mean you are seen a bit quicker.

  • thanks for your reply! did it get yourself seen quicker? im guessing from what you said that your diagnosis was endo? xx

  • I was given an appointment for an urgent ultrasound as they had to rule out cancer, but overall I think it was helpful as prior to that the GP had told me it was IBS and I was menopausal (at 37) and had refused to take it seriously. Once I had that blood test result he was forced to do something about it. In the end it turned out that I had severe disease plus adenomyosis.

  • yes i said to my doctor im nervous to have the ca125 for many reasons, i have a child also who is severly disabled and the thought of cancer and not being able to look after her terrifies me. i had a lap in 2015 for endo they found nothing and told me IBS. i do have a histpry of early menopause in my family but im only 26 atm. nearlly 27. i just want to know whats wrong with my body! thanks x

  • Hello. I had the CA125 test about three weeks ago. The gynaes can't decide if I have endo, but I do have PCOS. As it is raised I am sent down the accelerated pathway. I saw a consultant a week later, had scans four days after that and they tried to do a hysteroscopy on Monday. Stupid gynae did not use any anaesthetic and it was too painful. I have to have it done under general anaesthetic. Got a phone call Monday afternoon to book me in for this Friday. I must admit it is scary, but you will definitely be seen within one month of referral. Hopefully you will get diagnosed and sorted. I'm fed up because I want a hysterectomy, two years ago I was told I could have one, then they said no and released me from gynae care and left to suffer. Now I'm back in hoping I get the hysterectomy this time. I am 44 now and don't want children so don't see why they won't! If I had it back then I wouldn't be going through this again now. Ugh!!

  • thats horrible😩 but atleast you are being seen quicker! i hope you get sorted asap, i wouldnt care if they give me a hysterectomy now even at 26. i made the choice a couple of years ago to not have any more children as my previous comment says my daughter is severly disabled so i wouldnt have anymore regardless of my problems with my own health. i am terrified of having them, did they contact you asap or did you have to wait for your blood results? x

  • So sorry to hear about your daughter, but sounds like she has an awesome Mum. As soon as the blood tests returned my gp phoned me and told me she was referring me to gynae on the cancer fast track. She said if I hadn't had a call by the Wednesday(this was Friday), I was to call the surgery for them to chase it. Been a whirlwind couple of weeks. If it is cancer I will just deal with it. I have met some women who have had hysterectomies at a young age, but not many. Maybe me suffering 30 years isn't enough! Just wish they would take the lot away. I've lot jobs over it, and have been single for years because it's not fair with all the pain and such I have. I would keep telling them you want a hysterectomy and hopefully they will listen.

  • thankyou😊 i will keep my fingers crossed for you! its bad enough we have to suffer in pain let alone everything else on top😞when is your next hospital appointment etc to find out or the next step? soon i hope. i have my bloods tomorrow so will post an update here if i hear anything, im almost certain i will have a call im pretty confident that i know my own body, i like you have had no end of problems 'down there' and im only 26! i dont want to live however long of my life in this pain xx

  • Thank you xx please keep us posted. It's not fun at all. Gynaes don't seem to get it. I would happily have had a hysterectomy 20 years ago. I don't want children so can't see why. Anyways, I am having a hysteroscopy (camera inside the womb) on Friday under general anaesthetic. Then will be back to see the gynae consultant with the results. Haven't got the date for that but I'm sure it will be quick.

  • ive just had my results back and They have come back normal:) to say im relieved is an understatement, but also left feeling confused! they tested for polocystic ovaries too and they come back normal. guess i just have to wait for my Lap now😕 how are you doing Bailey72? xx

  • I am so pleased your results came back normal x Must be a relief,and hopefully they will find out what is going on. Never had a lap so can't give any advice re that. I have had the scans, also had a smear done and had the camera into my womb and they took scrapings of the lining and they have been sent to histology. No fibroids or polyps were found so that has been ruled out. I go back to see the consultant gynae on 4th May to get the results. Bit scared, but hopefully all is clear. I have currently been suffering really bad period pain constantly and that is getting me down too. I want a hysterectomy so hopefully they will finally give the go ahead for that.

  • thankyou bailey72, definitely a releif i just feel really confused. went back to the doctors today actually too see where to go next i am due a smear in june so doctor is happy for me to wait for that. and then just a wait for the laparoscopy, ive had one before its not too bad, luckily my other half is good so i will be able to recover properly. i didnt think of fibroyds or polyp for myself, would it be gyne or GP to talk to about this? i hope you get answers the correct ones and they give you what u want, i dont see why they wont do it a women is really that adamant i know they say about age etc but they dont live with the pain we do! ive even thought about having the Op private because im so fed up😕 let us know any news you get and look after yourself xx

  • hi ladies. That must be a huge relief your results came back normal and I hope you get some answers soon.

    for those of you waiting for the results in September 16 I had mine done and they came back as 2146, much higher than 35. Mass panic I had fast tracked ct and MRI scans. After being sent to specialist it was decided that my endometriosis and the chocolate cysts I have caused the high reading. It dropped to 905 and then again to 224, its still high but they do in my experience react quickly and the consultants reassured us endometriosis, cysts and sometimes the medication can all cause high readings.

    I know how scary it is waiting but its not always as bad as you fear.

    hope they get back to you quickly.


  • this is what i feared Tillyfloss. i was so terrifed of the results because i have heard about endo giving high ca125 results. i feel really confused now as to what is wrong with me, maybe it is endo? i dont have a clue anymore but back to the docs i go and continue on the dreaded lap waiting list... im glad you are ok xx

  • I think you can still have Endo with normal ca125 it's just an indicator.

    what type of pain are you experiencing? Is it all the time or related to your cycle?

    surgery is scary but it gives answers which helps in the long run.


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