My Ovarian Cyst, Torsion and Surgery Story

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This is going to be a long one I'm afraid. Hopefully my story can help others!

First of all I will start of with this...I was 21 at the time of my first cyst and a fit and active person.

I'm only 22 now so this has all happened in a short amount of time!

Whilst on holiday in July 2012 I started experiencing some strange stomach cramps. They were sort of like a cross between a period pain and the feeling you get when you need to go to the loo with a stomach bug! Not pleasant. They were happening a couple of times a day but I didn't really think much of them!

These seemed to pass when I returned home and I had 2 weeks pain free! One evening I felt a strange, minor pain in my lower right abdo area. I wasn't sure what it was but it didn't feel like something I had felt before. It was only painful whilst I was moving but fine if I layed down still. After aroiund 3 days of this pain I went to my GP who thought maybe I had a case of a rumbling appendix and told me to return if the pain hadn't gone within 24 hours.

For about 5 days after this I had zero pain at all and thought it had gone away. I would then say about mid week I started feeling the same pain again only this time it was painful to touch but would still come and go. I visited my GP again and he recommended I go home with painkillers and return to A&E if it became significantly worse. I went to work the next day feeling fine however mid day I started to feel much sharper pains and began vomiting. I left work and went straight to my GP who did a urine dipstick which showed high levels of white blood cells so I was sent straight across to the hospital to be admitted.

I was in hospital for 3 days before a diagnosis! I saw 3 different doctors who did the same thing over and over...felt my tummy and asked the same questions. Eventually they gave me an ultrasound and found what they thought was a 6cm cyst on my right ovary. The sonographer told me it was 'borderline needing something to be done about it'. Whilst I was in hospital my pain increased big time. It was impossible for me to walk without horrible sharp pains and I felt very sick. I was on morphine and codeine for the pain although neither seemed to help!

I was moved on to the Gynae ward where a consultant finally came to see me. He told me in actual fact my cyst was about 8 cm and was bleeding. He said it had twisted (a torsion) and was cutting off the blood supply to my ovary. He told me I would be in for an emergency laparotomy the next day to have it removed. He explained that he couldn't be sure until he opened me up wether my ovary would be intact enough for him to repair it or wether it would have to be removed.

Let me tell you I was not prepared at all for what was happening. I went in to surgery the next day and was under for around 4 hours. When I woke up I was in the worst pain I had ever experienced. I had a catheter in and also a tube which was called a drain which was going in to my stomach and was stitched in. The drain was there to take away any extra blood loss from the repair on my ovary (which they managed to save) I was told I should lose no more than 150mls blood. This was at 11pm. By 3am my night nurse was getting worried as my pulse and temperature were still high and by this point I had lost 600 mls of blood. My surgeon was called and he came and told me if I lost more than 700 I would be going back into theatre to have my ovary removed.

I was very out of it on morphine and not really understanding what was going on but luckily I lost exactly 700mls and no more. The next few days were a blur. My Hb level had gone from 14.2 to 5 and I was very weak. I was on iron supplements and was having blood taken 3 times a day. I ended up having a transfusion. The recovery was the hardest part. Trying to walk with a 15cm wound and a catheter and the pain from gas OUCH! Anyway I healed properly after around 10 weeks but as I have a physically demanding job I was off work for 4 1/2 months!

I was then pain and cyst free until the following summer...to the exact date. When I was re admitted with similar symptoms and diagnosed with a 4cm ruptured cyst which had to be removed. This time by keyhole surgery so a much faster recovery (2 weeks).

I am now 6 months on and have a 3rd ruptured cyst. Waiting to hear about what they want to do! I really hope this answers questions for some of you and please ask them I'm willing to answer!!

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  • Posted

    I am wondering what types of cysts you all had? Mine is a functioning cyst and I have all of the same symptom's but my Ob/gyn does not seem that concerned aboit my pain or the size. Eventhough she said it could cause torsion at anytime because of the size. Come back in 6-8 weeks I was told to have another ultrasound to check the size. Thanks!
    • Posted

      Hi Catherine. Mine was a cyst just filled with fluid. I needed to have it removed and during surgery they took an ovary and tube. Mine did end up by time of surgery about 29cm so was very large. I have recovered very well and can honestly say it's not an unbearable pain at all after surgery. Worst part is getting up and down out of bed first few days is uncomfortable more than anything. As I am pregnant getting it all done I only had paracetomol the entire time and it was fine. I had the open surgery due to size etc and it's the not knowing and waiting before hand is the worst. Some people are left in so much pain for so long before getting surgery. My advice is of your still experiencing pain keep going back until someone listens to you. I was palmed off with all sorts of excuses and it really annoyed me that I could have had the surgery before I was pregnant if they had of listened to me. Thankfully my pregnancy is ok so far and hope not all stays well and baby is healthy but it was a lot of unnecessary anxiety and stress thinking of it constantly.

      Sorry for the rant!!!

    • Posted

      You are so right so people are left with so much pain for so long! I found out I had an ovarian cyst at age 19 it wasn't after countless of visits to emergency rooms and doctors that they finally refer me for a surgery. I keep bugging until they finally listened, but I couldn't take the pain anymore . It turn out my ovary had hair and teeth. How fun!
    • Posted

      Not knowing can be very stressful.  Like you I had been waiting for results regarding an abnormal mass in my abdomen, when suddenly I experienced extreme pain on my left side.  I had a solid ovarian tumor that had twisted and cut off blood supply. Even on IV morphine, the pain would not go away.  I had emergency surgery.  My surgery started with metal sticks and cameras inserted into my belly button and pelvis.  The tumour was discovered to be solid thus could not be drained whith its sack removed like some cysts.  It had to be removed by abdominal surgery. Ultimately, all organs were checked for tumours or signs of abnormalities.  At the end of it, I was quite bruised and still in pain.  But the pain was not as bad as it had been prior to surgery.  I am very grateful for the urgent care I received when my condition suddenly changed.
  • Posted

    Hi Lauren

    I have PCOS and I started getting these sharp pains that haven't gone away and I feel like I need to vomit I don't want to go to hospital if it's nothing

    I have never had these pains and I'm worried about it

    • Posted

      I don't know what kind of cysts they are and the size they are at the moment and I'm only 21 and I'm scared
  • Posted

    I recently had my ovarian right cyst removed exactly 3 months ago. Unfortunately, I am still suffering from a lot of pain. I am feeling severe pain on the left side. I also, feel pain in my right side. My doctor thinks I am making up. I wonder how did you know you had another cyst?
  • Posted

    I had my surgery exactly four weeks ago. They removed both ovaries, both tubes, and a complex cyst. They also had to fix my cervix that wasn't in right place after four kids. The first week was the worst. I bruised pretty bad. I feel better all the time. My hormones however r out of control. I was put on hormone pills but one second I'm p*ssed for no reason then crying for no reason. It's so frustrating
  • Posted

    Thank you so much for sharing your story Lauren.  I really appreciate everyone's comments.  I had emergency surgery for ovarian torsion two weeks ago.  I had an 8cm tumor on my left ovary removed.  It was cutting off blood flow in my abdomen. The tumour was pedunculated (attached to the ovary with a little stem) so the ovary was not removed.  I am currently recovering and waiting to hear back from pathology.   There was also a second tumour and fluid in my abdomen. It's awful to be recovering and thinking-- that if the results come back positive for cancer I'll have to undergo more surgery.  I am finding the first period following surgery to be particularly painful, did others experience the same?  I also had a numb patch of skin on my left leg immediately following surgery, but the feeling came back.  I was told that the position of my legs during surgery (in stirrups) caused a pinched nerve.  Thank you again for sharing your story.  This is certainly a distinctly womanly journey.
  • Posted

    Hi Lauren,

    I had a large cyst removed from the left ovary and a large group of cysts from the right ovary 19 years ago. I was 18 when this happened and have had symptoms off and on since then. Despite being advised that I may not be able to conceive naturally due to scarring to the falopian tubes I had my daughter at age 26. I have nominal amount of ovarian tissue to the left ovary but I am having problems with the right ovary.

    I was diagnosed with renal colic two and a half years ago and following 3 CT scans no stones have been found. I was only when I had an ultrasound scan 3 weeks ago that a cyst was found which is leaking. I have been off work with extreme pain and needing very strong pain killers, it is unbearable at times. I can not drive as it is too painful to break.

    I am due to see a specialist next week and I am desperate for the right ovary to be removed so this can not happen again. Last time I was rushed into hospital and had surgery on the same day. I feel that this time I am in more pain and been left for 4 weeks now in lots of pain. I hope that this does not impact on my job.

  • Posted

    I have just had my surgery. I had a cyst on my left ovary. I felt bad Friday, went to see my dr Monday and was admitted to have it drained Tuesday. When I woke up from surgery to find my left ovary was removed and both my tubes. My ovary was adhered to my colon and had to taken out. I had a hysterectomy back in 08.

    I did fine the first week. Tomorrow is my 2 week post op appt. Last night I started to have a lot of stomach discomfort. More than the gas. It started after my first bm after surgery. I know things move a little after you have surgery. They are taking things out. I have been down this road before. But it has been getting worse. Has anyone had this happen? I don't have any fever and don't feel sick. But I am having intense pain in my lower abdominal area.

    Calling Dr to see if he can get me in earlier than tomorrow.

    Thanks😕

    • Posted

      Could I have a bit of advice please? I'm 18 and I was in agony for months, feeling sick, severe abdominal pains left and right and underneath my tummy. I went to my hospital GP last tuesday I was admitted Wednesday 12:30 am early hours of the morning and was put on a drip all night. Wednesday morning I was told I would have a CT and a Ultrasound to see what my pain was because the doctors didnt know if it was appendicitus or an ovarian cyst. Half hour later after being told I was going for scans about 8:30 am another doctor saw me, felt my tummy and told me that he wasn't going to send me for scans he was going to send me for an emergency operation that day. I went to theatre that day just after 12pm. I was down until 3pm and when I came round after the surgeon told me that I had many cysts on both ovaries but a few cysts ruptured and bled on my left ovary and that they had to drain the cysts and they had to drain fluid from around my womb and my pelvis. The surgeon also said he doesn't know how long it will take for the cysts to fill up again. I would just like to speak to someone who has been through similar things to me. Also now I am getting severe sharp pains in my right abdomen again and I feel very sick and I'm getting cramps in the top back of my right thigh and I feel pressure when I have to urinate like I have a full bladder but it won't all come out. Any advice would be amazing. Thank you:-)
  • Posted

    Could I have a bit of advice please? I'm 18 and I was in agony for months, feeling sick, severe abdominal pains left and right and underneath my tummy. I went to my hospital GP last tuesday I was admitted Wednesday 12:30 am early hours of the morning and was put on a drip all night. Wednesday morning I was told I would have a CT and a Ultrasound to see what my pain was because the doctors didnt know if it was appendicitus or an ovarian cyst. Half hour later after being told I was going for scans about 8:30 am another doctor saw me, felt my tummy and told me that he wasn't going to send me for scans he was going to send me for an emergency operation that day. I went to theatre that day just after 12pm. I was down until 3pm and when I came round after the surgeon told me that I had many cysts on both ovaries but a few cysts ruptured and bled on my left ovary and that they had to drain the cysts and they had to drain fluid from around my womb and my pelvis. The surgeon also said he doesn't know how long it will take for the cysts to fill up again. I would just like to speak to someone who has been through similar things to me. Also now I am getting severe sharp pains in my right abdomen again and I feel very sick and I'm getting cramps in the top back of my right thigh and I feel pressure when I have to urinate like I have a full bladder but it won't all come out. Any advice would be amazing. Thank you:-)
  • Posted

    Hey how are you ???? I've been spotting for 12days then 2 days ago it turned heavy went to the hospital to be sent home today I woke up in horrible pain what do you think it could be
  • Posted

    I'm sorry to hear about all of the pain people have boon through, but I'm also happy to hear of other women in a similar situation. I'm 23 and my gyno found a 7cm+ cyst on my left ovary back in September, but I've recently moved to France so it's harder to get it checked. My doctor says she's not concerned about the kind of cyst, but that its size can cause my ovary to twist around. Just got another ultrasound mid-November and it's about the same size. I should also mention that I've been using the Mirena IUD since August 2014. I'd had intense cramps related to my IUD at first, but now I just have consistent heavy discharge and spotting in addition to painful cramps/stomache upset. Do any of you have IUDs that may have encouraged the cysts? I keep oscillating between being worried and wanting surgery to take care of it, and then feeling like it might go away on its own. 

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