Ovarian cysts?

Hi there, feel like a bit of a cheat posting in a chat like this. 

After a long 6 months I'm finally being referred to a gynecologist after the discovery of cysts on my ovary just over a week ago.

My last period was March 2019, and have missed them every month (not pregnant) until I had some unusual spotting, my doctor referred me for an ultrasound where they found the cysts. Along with this, I've had back pain that numbs my leg occasionally, abdominal pain, fatigue, frequent urination and difficulty in passing gas. My doctors aren't giving me much information as to what they think it could be. Can anyone advice me on what it sounds like? Or any previous experience good or bad as to what happened to them? I've researched simple cysts, that say it doesnt usually cause any pain and I'm loosing my mind as to what might happen, whether it be I have to have surgery. I have a 2 year old to look after as well as full time work on my feet for long periods.

Thank you in advance

  • Hello

    Sorry to hear how rubbish you've been feeling. I don't have any answers I'm afraid as I'm currently waiting on my scan as doc thought cysts. Can I ask what your abdominal pain is like? Also did they do a Ca125 before your US? 

  • Hi there

    I had pain, spotting and irregular periods for quite awhile before seeing the doctor. Long story short, I had blood tests for the CA25 marker and a ultra sound scan. The marker was elevated and the scan revealed 2 fairly large cysts.  I was referred to a gynaecologist at the oncology dept and within 2 wks I underwent surgery.  It was keyhole surgery and you’re only in as a day case. You’re admitted around 7am and I was home around 8pm the same day.  I had 2 cysts removed and a fibroid.  I was off work for 2 weeks. Fortunately for me, everything was benign.

    Please don’t worry about the surgery or recovery, it was much less stressful than I was expecting.  I’d never had to have surgery before, so it was a little scary.

    Good luck and if I can support you in any way, just let me know.

    Sarah x

     

  • Thanks for taking the time to reply. That sounds so traumatic but I'm glad everything was OK.

    My pain is on the left side and I can pin point it to the spot. Seems to happen more through the night for some reason but its so excruciating. Ca125 levels are showing nearly 4x higher at 112 and doc said not to worry as cysts also raise it but I'm freaking out that it's too high for that and got 2 weeks until scan.

    Was just looking for some reassurance that others had been in the same boat and everything be OK as I also have a 2 year old. 

  • Hi CI6,

    Abdominal pain is quite dull, sometimes sharp if I've done too much in the day, it comes and goes but more painful during urination and passing stool (sorry for tmi).

    I have had alot of blood taken over the course of a couple of months, as far as I'm aware it was just for thyroids and hormone levels and just an overall check which all came back clear, I dont remember seeing a CA125 on the paperwork.

    Sorry to hear you've been going through the same, as soon as I know what's going on I'll be sure to update you on my situation and the outcome. Please persist with your doctors, it took months to get where I am now.

     

  • Hi sassy_sky Sorry to hear that you're bloods have come back so high, I'm not a doctor but would definitely have some faith in what they say, even if it is very worrying for you. At least they have things moving for you now so you can get some answers soon, it's so worrying when you barely have any time to take to look after yourself and they start throwing the idea of surgery etc in your head, my little girl isnt so demanding and I'd like to think she was somewhat easy Haha, but as soon as I'm slightly poorly she wants all my attention. Is there any family that can support you through this time? My mum is my saviour luckily and does just as much research as I do up until the early hours of the morning and is very hands on, especially when I fell poorly a few weeks back and spent majority of my time in bed whenever I could. I hope you get some positive answers soon.
  • How are you now? I missed my periods since July apart from off spotting had a scan found a cyst on left ovary. Was referred to gynecology went there today she sent me for ca 125 test. She said not concerned and it's to rule anything out but I am freaking out. 

  • Hi there. 

    Sorry to hear you're going through a rough time too, my gynecologist said it was nothing to cause for concern and sent me for blood tests, long story short I need a blood test tested again called inhibin, I'm still awaiting for my answers but at the moment it looks ok! I've read online about inhibin and it's related to granulosa cell tumor, (it sounds horrendous but it doesnt look so bad) hope you get your answers soon, I'm no doctor but definitely listen to their advice xxx

  • Oh really? Do u have a cyst too? What's ur story? If u dont mind sharing. 

  • I hadnt had a period since March this year, and very light spotting inbetween.

    I had multiple tests for pcos and my thyroids until my doctor referred me to the hospital for an ultrasound where they found 6 cysts on my right ovary and then had an urgent referral to a gynecologist because of my other symptoms (back pain, frequent urination and bloating to be the main of them all).

    The gynecologist then did and internal and abdominal ultrasound and said they didnt look like anything nasty but sent me for bloods as routine. He offered key hold surgery which was the quicker option as they could take a biopsy but there was too many risks in terms of they didnt know what the cysts were and I could of run the risk of loosing my ovary, so suggested blood test, MRI and then surgery. My results came back a few days back with majority being ok but just wanting to do a retest on the inhibin bloods. I dont see my gyne until 16th October so will know much more then. 

    I'm not too worried and still very open minded. Please try not to stress (easier said than done), just do your research and keep open minded to what could be said is all I'm doing for now.

    Fingers crossed you'll be fine xx

  • It's good they are getting to the bottom of things. You will have to keep me updated. Did u have the ca 125 test? I havent had any pain symptoms (touch wood) just missed periods. She told me they wont remove my cyst unless need to.