Just found out got endo cysts

Hi there I'm new here. I had a scan yesterday and got 2 cysts 1 on each ovary . One was 5cm she also said it had pushed one of my ovaries slightly back . Waiting now for doc to get results and go from there . Sick of the pain but it's nice to know what's going on . As I was so frightened as had Docters phone me with a High Ca125 reading . I'm need to learn about this disease now . Can anyone advise me here . Thanks so much x

21 Replies

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  • Is the cyst an endometrioma?

  • Yes it is

  • I have an endometrioma on my right ovary. It is 36mm in size and I am now on the waiting list to get it removed through a lap.

  • How big is that in cm

  • 3.6cm

  • That's not so big why are they wanting to remove it ? Mine is 5cm

  • It's causes me pain, I've had one burst before in June and it was the worst thing I've ever, ever felt in my life!!

  • I can't give too much advise, but just to say I'm in a very similar position, had a high CA125 test come back and the results were an endo cyst on my ovary. Just waiting for my appointments to come through now though.

    I had always thought I had endo.

  • SMr got me always had all the symptoms it's horrible isn't it x

  • hi and welcome this is a brilliant place for information about endometriosis.

    I have had chocolate cysts issues and a very high ca125, completely freaked me out but after ct, MRI scan and various other tests it's the endometriosis, cysts and meds causing it which is normal according to the specialist im under.

    you need to try to get referred to a bsge centre as they are very skilled in treatment. For daily pain management get referred to the pain clinic they were fab at sorting out my meds and it really did help whilst I waited for the operation.

    the other thing I have found is being completely honest with people, I did get quite the drama back in September so most people were aware but its a disease that isn't talked about so I decided to be open about it within reason, its amazing how many people like the gory details!!

    im going away for 10 days but if you want any specific information please feel free to ask it just might be a while before I reply but I will 😊.

    good luck with your endometriosis journey. Xx

    Ps diet can help with daily pain for some people to😊

  • Hi thanks for the good advice I'm really new to it all as just been diagnosed. How does it cause a high ca125 reading ? X and how long have u had it ? X

  • hi. I know how it feels was a bolt out of the blue for us. My understanding is anything with growths or cyst can cause a high ca125, and the endometriosis growth can cause it as well and sends your immune system into overdrive. It is only an indicator and even some of the drugs can cause elevation in the reading, how high was it?.

    I only found out I had endometriosis in September 16 after emergency surgery, in may I had more surgery and we got the grade 4 deep endometriosis and frozen pelvis diagnosis and my tubs are knackered too which explains the fertility problems ( all tests came back clear so was very frustrating). In September I was really poorly so its been an emotional rollercoaster for us.

    we are heading off on a family holiday with a ban of endometriosis being mentioned ( my suggestion as it has consumed us since Sept) but I'll be back in 10days as I like to see what people are up to and have found it a huge help.

    have a good few weeks 😊. Xx

  • Awh poor u . Sounds nasty . My Ca was 108 and my symptoms was frequent urination and so badly fatigued and loseing weight . And just can't put weight on . It's a horrible disease . U hi and enjoy your hol X get some some thst will do u a world of good. Keep in touch x

  • I've got a 6.5cm endometrioma in my right ovary (which is apparently between my womb and my bowels?) and a 1.8cm endometrioma in my left ovary, I'm in a very long waiting list for surgery at a bsge centre to remove both but having to try and cope with paracetamol and ibuprofen or naproxen as the codeine makes me feel sick, dizzy and tired so I have to lie down for 3 hours after taking it!...not good when I want to continue working up until my op due to not having a date!

    I was admitted to my local hospital a few weeks back due to the pain and that unfortunately hasn't sped up my surgery although I'm not sure how much more I can take of the pain!

    I've never had a ca125 blood test done so can't help with that!

    Push your gp for a referral and if you are finding the pain meds are not working keep going back until they have changed them and find one that is right for you as all of us are different and different meds affects us all differently.

    Hope you get to see someone quickly and you don't need to wait too long for surgery (if your doctor wants you to have that!)

    I was given three surgery choices by my consultant:

    1. Drain the cyst and cut away the cyst wall (damages a lot of ovarian reserve)

    2. Drain the cyst, go onto zoladex for 3 months to shrink ovaries and cyst wall, got into surgery again 3 months after the first one and have cyst wall removed from inside ovaries (damages ovarian reserve very minimal though!)

    3. Drain cyst and burn away cyst wall (damages ovarian reserve but much less than option 1 but is most likely to reoccur again!)

    I've gone for option 1 due to not wanting the cysts to grow back and I am so against going into temporary menopause for 3 months due to being only 26 and two operations 3 months apart just seems hideous to me plus I love my job so I don't want to keep being off sick!! Xx

  • I'm so sorry to hear your having a bad time and u r do young . I'm 38 and I know I've had it for years only to be told now . I've had the symptoms for years .i got it under control with pain killers but some of your story's seem to be in really bad pain . Thankfully touching wood I'm not like that. So I am waiting to see doc now with the scan results and he will most prob refer me , but the woman who scanned me said best cure for this is the pill . To stop the periods completely and it will go away . I don't want surgery as it's a waste of time . Endotremitis comes. Back x

  • hi how are you getting on? Have you had your ca125 checked again? Xx

  • Hey yes I did put a post up about it on her it's come down from 108 to 62 so doc was very pleased with that x

  • hi. That's great, are they repeating it again or are they happy its going down?

    we've been away so I've not been for a few weeks we nearly had a Endo free holiday, some bread bought on pain but luckily I've got it down to a fine art dealing with it these days.

    xx

  • That's brilliant news did u have a nice time ? Well I'm still waiting for letter from gynaecologist now and go from there. I'm hoping I can have the pill awh something as I Defo dnt want surgery . X

  • we did thanks, god weather and even a occasionally stroppy six year old was bearable as I was mostly comfortable 😊. I hope you get your appointment through soon, how is your pain at the moment? I didn't really have a choice with surgery and after the drama in September I was very nervous about going through it again but it's helped massively and I feel comfortable in myself as I was very aware of the cysts and they could easily felt so its great being free of them for now. They usually keep an eye on the growth of them and then advise you accordingly. The dropping ca125 is always a good sign to, mine was 2246, then dropped to 900, then 200 prior to surgery, they did it again but I don't know what that is as they said they would only be in touch if it was the same or higher so hopefully its dropped again.

    xx

  • To be honest I don't really suffer pain . I have in the past as I've had some burst on me now that hurts .i just suffer on my period which I'm dreading as it's in 2 days time. But touch wood I'm ok. I just want the pill to calm my periods down . Yes very pleased with the drop in my CA125 it's still not normal but it's a lot lower so happy with that . Really glad u enjoyed your holiday u deserved it x

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