39 yr old - my experience of massive cyst and surgery

Posted , 4 users are following.

I've read with interest others stories and experiences over the past couple of months and thought once the scary part of my journey was over (the surgery) I'd contribute to this thread.

It kind of all started around mid-March- my female partner insisted on me making an appointment with my GP after seeing me try on a bikini for our upcoming holiday. I had to admit I did look like I was pregnant, there was no mistaking that I was not just getting fat, as there was no wibble wobble in this case, just a hard mass. I opened up to my partner, admitting it had been giving me bother- not acutely, but I had had feelings of bloatedness, tenderness and what felt like a stitch which would last all day sometimes. In addition, I'd noticed I'd been going to wee a lot over the past few months (15 times a day was normal). I'd been working long hours, feeling stressed and drinking lots of coffee and I guess rather naively thought things would just go away on their own. 

So, I made my first ever Dr appointment as the last one would have been by my mum when I was a kid, and wasn't sure what to expect. After taking my history, feeling my stomach and then providing a urine sample, I was told it could be an ovarian cyst, but could also be bladder cancer (blood was found in my urine during the dipstick test). I was told I had to get an ultrasound but with the holiday a few days away, I put this off until I returned a couple of weeks later. Before going on holiday though I went back to the GP surgery to provide a blood and a urine sample.

The holiday gave me plenty time to 'Google' what the GP had suggested and while I have to admit I didn't feel like I had cancer, I was worried. I had an ultrasound (pelvic and abdominal) lined up for when I came back, and a large 'suspicious' cyst was found. I was surprised by the size of it-a rugby ball size apparently, but did feel relieved that it was a cyst on my ovary and not bladder cancer. That same day though, the results of the ultrasound were faxed to my GP who later called me at work. She told me I was getting referred urgently on the 2wk referral scheme so I was to take the appointment when I heard from the consultant. She sounded concerned but didn't say what the 2 wk referral rule was for. I soon found out myself with my old friend Google, and a new panic wave set in-suspected ovarian cancer! I met the consultant about 8 days later, where she examined me, gave me a cervical smear test, more blood and urine tests... She told me I'd have to have an MRI scan, as if it was cancer, they needed to know if it had spread anywhere. At this point they had the results of my earlier blood tests - Ca 125 was normal at 14 (over 30 would be a concern). I had the MRI about a week later, and just to worry me even more, a few days after that I was posted a packet in which I had to provide a blood sample for 'urgent' tumor marker profiling. I started to wonder if the MRI had shown something, hence this next set of tests? The good news came a week after the MRI- all looked good and the tumor markers were fine. I was told the only way cancer could be ruled out, however was by a biopsy, but at this stage I was just happy to have the news that I had. 

Fortunately I have private medical insurance with my work, so was given a 3 wk waiting time for surgery. I was to have a laparotomy due to the size of the mass, and removal of the right ovary to which it was attached. In that 3 weeks the nerves did build up, and one day at work, I'd stupidly lifted some heavy boxes which had me in agony later that day- I must have caused the cyst to twist, but ibuprofen did help take the edge off things. It made me realise I'd need to look after myself prior to surgery, so I tried to build myself up nutrition wise to get my body ready for what was to come. 

The big day was Thursday 28 May. The surgeon later told me 2.7 litres of fluid were drained from the cyst; there was some solid sections and they've been sent off for tests. Recovery has gone really quite smoothly, I got out of hospital after 3 days. I'd been given a catheter and a drain following surgery, but they were fine. A bit painful to pee after the catheter came out, and I've been constipated as a result of all the painkillers. I'm walking like an old lady, but I feel a lot stronger than I though I would. I'll be off work for a few weeks but this whole experience has been an eye opener to say the least. I now know to listen and pay attention to my body, not put things off. My partner has been fantastic through all of this, as it really has been a series of highs and lows these past few months. Finally, I hope this helps others in that others stories helped me come to terms with all that was going on.

 

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10 Replies

  • Posted

    I just read your post and am currently planning for surgery on Monday June 8. I have a complex cyst on my right ovary and an enlarged uterus.  I have had all the blood tests and CT scans but really freaked out when I opened insurance letter to find that debulking and lymph node removal was approved.  I am wondering if this  is standard to get all possible procedures approved just in case before surgery?  Did your cyst only take a few months to get big?  I didn't really notice until I was having to pee all the time.  I just thought it was a part of aging-I'm 53. 
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    • Posted

      Hi allysponies,

      I'm afraid I can't comment on what your insurance has approved, as maybe different insurance companies operate differently? I had to provide my insurance with the procedure codes that my consultants secretary gave me, and for me it was just the 2 procedures (laparotomy and oophorectomy). In you case you may wish to ask you insurance Why these extras have been added, especially when the assessments appear ok thus far? 

      I think my cyst had been growing for well over a year or more, just quite slowly but really ramping up over the past few months. I haven't had much chance to exercise lately and put it down to just getting heavy/getting older etc... 

      Have you had any pain, is that what made you go to the Dr? I wish you all the best for next week, stay strong xx

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  • Posted

    Hi lisa

    Thanks for letting us know about your experience of cysts.

    I had surgery same as yourself on 15th of May it's a long process to feel better so I know exactly how you feel.

    Love louise xx

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  • Posted

    I actually went in for a UTI and did the round of antibiotics but the symptoms came back  and had a lot of abdominal pain.  I went to my annual exam and the doc referred me to an US for an enlarged uterus.  The US showed a complex ovarian mass that even I could see on the screen!  By then I was completely freaked out and felt sure I could feel it growing by the minute.  I have some pelvic pain and occasional abdominal pain and the pregnant look.
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  • Posted

    Hi there I just wanted some advice from you ladies if possible as I'm really going through it at the mo. Twelve months ago I starts having abnormal bleeding in between periods, pink blood, brown blood. Discharge etc. abdominal discomfort almost like a tugging feeling and tender feeling. Serious headaches and now stabbing pain in my back near kidneys. Feel tired all the time. So far I've had smear eleven months ago and it was ok, a probe camera and they said it was ok and bloods were ok. But I'm getting worse and I do t see a specialist for another few weeks. Ones anyone have any advice please really worried they've missed something and it's beggining to get to me. Thanks
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    • Posted

      Hi Hannah,

      my periods had been absolutely normal, and I think if I'd had spotted something wrong with them I would had gotten myself to a Dr a lot sooner than I did. Having read others posts on this forum though suggests that others have had problems with their periods when they have cysts. Has your GP suggested an ultrasound, as that seems to be the quickest way to check for a cyst?

      I know it's very worrying while you're waiting so hope you get some answers soon. All the best, stay strong and keep us all posted

      lisa x

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    • Posted

      Have you had an ultra sound? I was counting months to my menopause goal when a period showed up and overstated overstayed it's not-so- welcome. Now that the cyst has made an appearance I am having period again though not always a typical duration or flow.
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    • Posted

      Hi thank you fir your reply. I've had a probe camera and ultra scan and there showing nothing. But now I'm having back pain, I feel like I have a temperature, discomfort in ovaries and private region. It's horrendous and extremely worrying. My periods are pretty normal but it's the Inbetween spotting that me.
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  • Posted

    I just had my first meeting with my consultant 3weeks after the surgery a few days ago. Unfortunately I'd been pretty much assured the cyst would be benign but here I was told I has borderline ovarian cancer, the mucinous type. While not classed as cancer per se, it has the potential to develop into and therefore requires more surgery-prevention better than cure. I was told I'd been referred to an oncologist (but I thought you said it wasn't cancer?), who I met yesterday. Looks like things will move pretty quickly so now have to face removal of my other ovary, total hysterectomy and removal of some part of my colon. I'll be given HRT I was told since I'll go into early menopause. 

    Was really hoping the whole experience would be near complete, so this has come as a shock. Of course I'm grateful it's not cancer, and as I have no intention to have children at least the thought of a hysterectomy isn't as hard as someone who needs all their womanly bits. 

    Just wondering if if anyone else has been through something similar, and how does recovery post hysterectomy compare to that of laparotomy for cyst removal?

     

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    • Posted

      I just had an abdominal hysterectomy that was at first glance possibly ovarian cancer but ended up being endometrial cancer. You want an onc because they know what to look for. Recovery has been slower than lap surgery due to a long incision. Use helpers and rest a lot. Stay on top off pain so it doesn't build up. Listen to your doctors.
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