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Ovarian cyst, awaiting ca125 results

Posted , 6 users are following.

KarleyXo
KarleyXo

Hello ladies! I’ve joined up so that I have others with experience to share my journey with. 

A little background info; I am in my 30s with children.  I have been having various symptoms for quite a while now but put them down to my contraceptive implant.  These include irregular but heavy periods sometimes lasting a few weeks and then nothing for a couple of months.  Constant stomach bloating, sometimes sharp sometimes dull aching down low on my abdomen, very frequent urination, back pain, gas, constipation/diarrhoea, migraines and nausea (vomiting most mornings) and the list goes on...

My gp suspected gall stones at first so referred me for an ultrasound scan. Gall bladder is fine but there is a 4-5cm cyst on my left ovary.  The man who did my scan said it was filled with fluid which I’m not sure is a good or bad thing?  

I received a letter following my scan last week to arrange a follow up appointment and be told that I’ll be having a follow up scan soon and that I needed a ca125 blood test done ASAP.  This was done Friday and I’m told it can take up to a week for results. I obviously googled what this blood test was as I had no idea and I wish I hadn’t 😞

This is all new to me, I have no idea where i stand, what’s next etc until I at least get my blood results and then meet my doctor.  I’m exhausted, sore and not going to lie that I’m massively scared. 

Any help, advice or just a chat about others experiences would help me massively.  Thank you all in advance xxx

1 like, 38 replies

38 Replies

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  • Guest
    Guest KarleyXo

    Posted

    Hey! 

    I have a About 10cm cyst on my right ovary, I'm only 23 years old. I didn't know anything until last weekend I woke up in so much pains I couldn't move for ages- my ovary or cyst twisted what caused all my pain. My cyst from the ultra sound person is a nice and round, doesn't seem to be any lumps or bumps, doesn't have a blood supply and mine looks like a simple cyst

    I think mine is fluid based as I have free fluid on my right side due to the cyst but they can't tell from just an ultra sound what it's made up of and that's why I'm having a ct scan. 

    Yes if it's fluid based that's a good thing! I have had that blood test and my results came backwith 48 hours and mine were all within normal range. 

    I know that scared feeling very well! I've been so worried and scared the past week about it all. 

    They may get you to have a ct scan just so they can see it better than just an ultra sound- it's

    Nothing to worry about as I got told it's rountine and they just want to cover all basis which is good! 

    I know it's super scary but take one day at a time! Xx

    • KarleyXo
      KarleyXo Guest

      Posted

      Thank you so much for the reply 😊 from seeing mine on the ultrasound it looked to be a kind of oval shape. Like an egg on its side. I’m going to give them a call tomorrow just incase they are in early but I won’t hold my breath on that lol! Will you be having yours removed? Xx

    • Guest
      Guest KarleyXo

      Posted

      The results shouldn't take long because of what they are testing for. 

      And yes I'll more than likely have to have an op sadly 😞 But I'm awaiting ct scan and then I'll see my doctor and they will decide what to do next. 

      I was so worried about the blood results but was so glad when they were back x

    • sophie81441
      sophie81441 Guest

      Posted

      This post says it was a day ago? I’ve never used this before so hope that is true! I am 25 just turned and have had on and off pains in my lower pelvic area for a few years doctors didn’t honk much of it.. but I recently got my latter inciting me to my first smear cervical screening, and I think I’ve gor myself wound up, I’m obsessingly googling every second I can all the different things I think are happening to me and I’ve made myself sick imaging the worst possible out come 😩 it’s actully nice to hear all of you going through the same thing! Little question with your cysts, did you have sharp stabbing pains and especially around ovulation? I am laying in bed at the minute with a hot water bottle and on and off shooting pains in my left ovary. I may bite the bullet like all of you and go to a&e tomorrow for an ultrasound and some blood just to clear my mind! Hope you can get back to me xx

    • Guest
      Guest sophie81441

      Posted

      It's a few days old. 

      I gooogled stuff and it made me feel so much worse! I woudnt google anything. Speak to someone medcailly. 

      With my cyst I never knew anything about it until I woke up one morning with really bad sharp stabing pain where I could hardly move so my friend took me to a&e and there I was told I have a large cyst. 

      I would get it seen too. 

  • victoria15250
    victoria15250 KarleyXo

    Posted

    I went through this same experience except i google my symptoms the web md had me convinced that i had cancer. Logically i knew it would be extremely rare for a 28 year old to have ovarian cancer but due to the pain an anxiety i went to the er and found out that i had a non simple hemorrhagic cyst in one ovary and a paraovarian cyst outside but separate from the ovary. I had 3 follow up sonograms which one month the cyst in my ovary was gone the next month i had another hemoragic cyst but in the ovary. On my last sonogram in december i had no cyst in my ovaries and it appeared the paraovarian cyst is shrinking. The hemoragic cyst were blood filled and both rumpured amd the paraovarian has always been less than 2 cms smooth round and fluid filled. I went as far as going to an obgyn oncologist who did the ca 125 test which can be raised for many readons such as having it done on your period. The oncologist assured me that fluid filled cysts very unlikely to be cancer then he put me on oral birth control to prevent more cyst. If you have been on birth control you are also taking preventive measures in getting ovarian cancer. Hopfully this reassures you.
    • Guest
      Guest victoria15250

      Posted

      Reading your story has helped me! I to look on the internet at my symptoms and have found the same thing as it comes up with cancer! Worst thing I done and now so worried. 

      My cyst is nearly 10cm and the guy who done my ultra sound when i atteneded a&e last weekend after waking up in so much pain they wrote on the report that mine was 

      -simple cyst

      -no lumps or bumps

      -was round 

      -there doesn't seem to be any blood  supply 

      Which I am taking as good things? 

      I am awaiting ct scan and

      Then I'll see doctor to see what they want to do- they most likely want to operte.  Which I'm so nervous about that. I also had that blood test and mine came back within all normal range and all other normal bloods they do all back normal

      But I can't stop worrying- any tips on how to not worry? As I know t's unlikely a 23 year old would have cancer but I made it all worse after serching online. 

      How are you doing now?  And Karley how you doing now? 

    • victoria15250
      victoria15250 Guest

      Posted

      I analyzed everything and made my body think that i had all the symptoms of cancer. It was terrifying. I had a great regular obgyn who listened to my fears and to ease my mind she refered me to an obgyn oncologist. I was told cancer would not come and go and that it is usually solid and not smooth or round. He did the final ultrasound not to mention all the radiologist were difforent and they came to the same conclusion in identying my cysts. With the birth control my persistent paraovarian cyst is also shrinking but i will have an ultrasound every 3 to 6 months to make sure my cyst continues to shrink or stay the same. Usually paraovarian cyst require surgery but because it was less than 2 cm and fluid we will wait and see. Now that my anxiety is under control my cancer symptoms that i thought i had are gone as well which if i had cancer the symptoms would not go away. Hope this helps you to alleviate your anxiety. Your cyst maybe big but it is fluid smooth and round so your good.
    • victoria15250
      victoria15250

      Posted

      Also i take lo loestrin which had very few side effects and i have not had another ruptured hemoragic cyst since November
    • Guest
      Guest victoria15250

      Posted

      Omg I thought it was just me that by reading cancer symptoms make me feel like I had them .. i that what your meaning that you thought you had them too?? 

      I spoke to my GP Wednesday and he gave me the tumor markers blood results which are all normal thank god and he has said to me that there is nothing to worry about. Going to call him tomorrow as anxiety and worry about cancer is too much! 

      Thanks that's helped!! So round it good?? I havent been told it's fluid based yet and that's why I'm having ct scan but I have free fluid on right side so same side as the cyst which my GP said on Wednesday that is most likely from the cyst where it's got so big some fluid has came out ... which suggests to me that it's fluid base .. any thoughts?? 

      Thank you for your reply to my comment! 

    • victoria15250
      victoria15250 Guest

      Posted

      Cancer has a blood supply and other components that would be very alarming. Are you seeing an obgyn. They are experts on ovarian cysts. Cyst do leak and rupture which would cause free fluid.
    • victoria15250
      victoria15250

      Posted

      Also start oral birth control so you can prevent other cysts and reduce the risk of ovarian cancer.
    • Guest
      Guest victoria15250

      Posted

      Yes I was admitted to a ward last weekend after attending a&e in so much pain and got told I had cyst. I was discharged the following day and the consualnt said unlikely to be cancer. But still got me worried. 

      Oh they do leak?? 

      On your other comment about where you said about where you made your body think you had all the symtoms... that's what I have done, I have over thought it all each and little thing. Got example I lost some weight I already made my body think it was cancer related why I lost weight as saw that on internet. 

      But it's most likely since last weekend until about 2 days ago I hadn't had much to eat due to pain and not feeling hungry. Does this make any sense at all, x

    • victoria15250
      victoria15250 Guest

      Posted

      The anxiety made me lose my appitite to where every time i would try to eat i would get sick. I lost 15 pounds in 6 weeks. I got my appitite back slowly by drinking smoothies and protein shakes. I was able to eat without getting sick in no time i just had to start out with small and light meals.
    • victoria15250
      victoria15250

      Posted

      And yes fluid cyst do leak hopfully yours does not rupture or cause ovarian torsion with how big it is it will be way more painful than when my 3 cm cyst ruptured in my ovary. Im no expert but i would think if it is leaking that maybe it is getting smaller. Cysts tend to go away or shrink with our menstrual cycles
    • Guest
      Guest victoria15250

      Posted

      Oh I'm glad I find someone else who most weight with a cyst as all what the intenet gave me that it was cancer! Really need to stop searching things on the internet. 

      That must be why I've lost

      Some weight.

      Thank you so so much for your replies! It's really helped! And has calmed my head full of worries down a little xx 

    • Guest
      Guest victoria15250

      Posted

      They think the reason for my sudden sharp pain last weekend that something twisted but then untwisted and that's why now my pain is so much less. 

      I'm hoping it's getting smaller as getting so worked up about the op but just have to see what my CT scan shows . I might ask them if they can tell me the size of it. I should have my scan this week as they wanted it within two weeks and then back to see consualnt 

    • victoria15250
      victoria15250 Guest

      Posted

      No problem if you Google ovarian cyst alot of the symptoms are the same as cancer which is probably why your freaked out. I google so much on cyst that google had me put in a code to make sure i was a live person. What i found more reassuring that googleing my symptoms was googling the sonogram and radiologist reports which will tell you the difforence between the appearances of cysts which there are many difforent kinds and of cancer then i compared my results and was reassured i had cysts not cancer
    • victoria15250
      victoria15250 Guest

      Posted

      Are you seeing an obgyn or general doctor? Obgyn tend to be faster at least where i live they are.
    • Guest
      Guest victoria15250

      Posted

      Yes that's what i found that both symptoms were the same ish. 

      Like I said I've been told mine is nice and round, doesn't seem to have blood supply, no lumps or bumps and that it's simple that's what the person who done ultra sound has put in his report I've been told. 

      Worried about CT scan and the op xx

    • Guest
      Guest victoria15250

      Posted

      Seeing a obgyn- saw them last Sunday when I was in hosptail before they let me go home and I'll see one of them as out patient too after my CT scan. 

      They wanted CT scan within two weeks and then seeing them at least by 4 weeks I think x 

    • Guest
      Guest victoria15250

      Posted

      What's the best one to go on? Does it actally stop cysts?? And really does it reduce the risk of cancer?? I didn't know those things. 

      Think I will go onto something. 

    • victoria15250
      victoria15250 Guest

      Posted

      With the size of your cyst i would think that the only reason for the ct scan is to deside wether or not to do surgery and if so if they could possible do a less invasive approach.
    • Guest
      Guest victoria15250

      Posted

      Yeah hopefully less invasive one is better option but where it's so big I don't know if they will. 

      Do you find that stress makes your bowels worse? Sorry tmi ! 

      Also I'm findin when I go for a wee it makes my tummy hurt could this be due to the cyst being so large and pressing onto my bladder?? 

    • victoria15250
      victoria15250 Guest

      Posted

      I am currently on lo loestrin which the objyn cancer specialist prescribed me back in November amd i havent had a cyst since and my paraovarian cyst even started to shrink. Ive read online that birth control will not make a cyst go away but it will stop it from growing as well as prevent other cysts from forming but that was googled. There has also been alot of research that suggest that if a woman has been on birth control for 5 years and or has had children it will reduce your risk of ovarian cancer by alot because it stops ovulation. Ovulation is when cyst usually form.
    • victoria15250
      victoria15250 Guest

      Posted

      Stress will mess with your digestive system badly. They thought i had gallstones at first. I also thought i had a uti. It was miserable. I also had morning sickness and i wasnt pregnant. The most important thing is that they dont rupture your cyst while removing it or damage your ovary.
    • Guest
      Guest victoria15250

      Posted

      Oh right I might look into that after I get rid of this cyst 
    • victoria15250
      victoria15250 Guest

      Posted

      Talk to your doctor asap. Birth control can keep the cyst from getting bigger.
    • Guest
      Guest victoria15250

      Posted

      I have IBS too so wasntnsure what my bowels are like how they are for what reason. I also suffer from mental health illnesses which don't help at all! I find when I'm really stressed my bowels are messed up even more! 

      They first thought mine was my appendix. 

      So with bladder when I go it makes the bottom of my tummy hurt is that the cyst pressing onto my bladder causing that pain ? 

      That's one of my worrys about having an op but I guess the ct scan will give help them in the op anyway. 

    • victoria15250
      victoria15250 Guest

      Posted

      Yes my lower stomach would hurt while peeing. My lower back pain was horrible. Then i would get cramps that made drop to my knees and cry.
    • Guest
      Guest victoria15250

      Posted

      Oh I'm glad I'm not the only one. Pain wise I mainly get pain lower stomach and for some strange reason I get pain on my left side even though cyst is on the right. 

      Thank you so much for you all your help!! 

    • victoria15250
      victoria15250 Guest

      Posted

      Keep us updated if you want to talk more my email is

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Guest
      Guest victoria15250

      Posted

      The moderator removed your email. 

      Did you find with a cyst that you weeing more than normal ?? And is it normal for weight to go up and down during the day? 

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