13cm ovarian cyst discovered

Hi all,

After a year of intensely painful periods and recent horrendous pelvic pain, as well as a very late period, I've found out this week I have a 13 x 13cm cyst on my left ovary, with lots of other cysts all over. They said they couldn't even see my ovaries on the ultrasound. I'm 28 years old.

My symptoms prior to having this ultrasound included:

- bloating

- hard pelvic area

- raised pelvic area on left hand side

- constant back ache

- fatigue

- sweating

- weight gain

- horrendous period pain, almost to the extent of passing out

Just in the last month or so as well, I've started spotting in between periods, and as mentioned earlier, my period in December was around ten days late and was brutal. I usually have to have a day off work per month because of my period pain.

I currently look about 3 months pregnant, none of my clothes fit me, and I feel awful.

I have had the CA125 blood test, so just waiting to hear back from that. I have also been referred for either an MRI or CAT scan, which is supposed to be in the next two weeks. I've been told that whatever the outcome, I have to have surgery to remove the cyst/whatever it is. That means either removing one ovary, both ovaries, or a full hysterectomy.

I don't have children, nor do I want them - I'm in a same-sex relationship as well and my partner doesn't want children either. However, I'm concerned about going through early menopause and the effects that might bring.

But all I can do at the moment is wait until my MRI/CAT scan and hopefully it's just a case of removing the cyst with nothing malignant about it.

Just wanted to see if any other younger women had any experience with a cyst of this size and what the outcome was?

 

Thanks :)

  • Just wanted to say I know how your feeling I'm at the start of the process too.

    found a 14cm mass presumed ovarian but arising from pelvic area.

    my bloods where taken on 8/1 when I saw gynae and I was told MDT would discuss my case on 15/01 and a follow up appointment has arrived for 21/1

     

    i had a hysterectomy 4yrs ago so I do t have that to worry about but like you I've been told it has to come out anyway.

    hope your getting support and hope you get sorted quickly x

  • Aww thank you so much for your lovely response and sorry to hear you're going through something  similar. I've literally just had a phone call for my MRI scan which is on Sunday morning, so at least everything seems to be going quickly!

    How was your recovery after your hysterectomy, if you don't mind me asking? My mum had one and she took a long time to get back on her feet xx

  • It all depends if it's done as open(bikini line cut) which I had.  I'm not going to lie it was initially quite hard as I've never been taken off my feet like that.  It's just a case of listening to your body and not trying to rush things it took nearly 3 months to feel completely back to myself.  The upside was not dealing with such awful periods etc

  • Yeah I bet it was difficult! I'm glad you're feeling better now :) thanks for replying to me xx

  • Offline in reply to ald

    Called the gynaecologist yesterday regarding my CA125 test and it's raised. I know this doesn't necessarily mean cancer, but all these factors keep adding up!

  • Did they say if it was complex/solid or if it was fluid? 

    From my understanding although size can be a worry it is more about the components of the cyst/mass that is what concerns doctors more. I hope your scan goes okay. Did they say they had any ideas of what it could be? The period/weight gain/bloating does sound like endometriosis. 

    I think if it is malignent then it would probably have the opposite effect of loosing weight 

  • It's complex / solid I believe. Yeah I thought that about the weight thing. The MRI was awful, I almost fainted because of them putting a cannula into my hand, and it was so long

    now it's just a waiting game! 

  • Offline in reply to ald

    Really going out of my mind with worry. Two weeks seems like such a long time to wait for the results, especially when it's only been two days...

  • Offline in reply to ald

    Still no word on my MRI results. I'm going mad. My CA125 results have been confirmed as 105.

    I can't concentrate at work. I keep calling to see about my MRI results but they're currently only partially reported / recorded and I have no idea what this means.

  • Hi I had similar experience 3 months ago now. I am currently recovering, very well I may add from a total hysterectomy and removal of an apparently 45cm! Ovarian cyst, which turned out to be pre cancerous, the lowest stage and grade possible. I am fine. So I can understand how you must be feeling. For 6 years maybe I had symptoms I thought were peri menopause, anyway my abdomen got bigger and bigger and I looked pregnant. I didn't feel unwell but fed up with constant bleeding and spotting and was getting lots of bloating, wind and uncomfortable, heartburn, indigestion and my jeans wouldn't stay up as slipped of big belly! I went to Dr's Aug or Sept last year, she arranged blood test. Had phone call, ca125 level raised. I had no idea what that meant. Dr said it may not be cancer but they would refer me to gyny at hospital. I was scared. I went for examination where they thought I may actually be pregnant. Had ultrasound and found large cyst. Then they arranged for hysteroscopy. This was cancelled as they had decided best thing was hysterectomy. When I went to see consultant he did a quick smear and hysteroscopy there and then, saw my tummy and said wow that's quite a lump. A week or so later had pre op. I had had phone call to tell me I was being sent to another hospital where they were more specialist in oncology gyny, yes I was scared but it all happened really quickly. I was told by a really nice cancer gyny nurse to prepare as they were treating it as abnormal mucinous or something tumour possibly not benign. Anyway I went, had the op and stayed in for only 5 days and then home, all was fine. I felt really good and 2.5 stone lighter! I looked super slim! Biopsy results came back all OK no further treatment. So just need to recover from hysterectomy, which for me is going really well. I do have quite a large long scar from bikini line up and around navel and a little beyond, so they could get the large cyst out in one. But all is good now. The relief now, no bleeding, no bloating, I feel great. Dr's and nurses all great and I was offered alternative treatment aftercare from cancer gyny too. I have a fear of anything medical but it was really not as bad as I imagined and thank goodness I was all sorted out. I wish you well and hope you get sorted soon