My Ovarian Cyst, Torsion and Surgery Story

Women's health
1

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!!

2

OMG! This sounds so awful! I have just been diagnosed with a 12cm by 9cm cyst on my right ovary and I am so frightened of surgery. I dont know when it will be but just hope I dont lose my ovary. What type of cyst did you have?

3

Oh bless you. Try not to panic too much! The only reason I had the open surgery is because it had twisted and was difficult to remove with a laparoscopy. I've since heard that they can infact remove large ones like yours through laparoscopy so try not to worry! Mine was fairly bad with the twist but they managed to repair my ovary. Don't worry until the time comes! I'm not actually sure what kind it was all I know is that it was full of blood! If you need any help or advice let me know! Hope you make a speedy recovery xx

4

Hey Lauren, i'm kirti. I had my twisted ovarian surgery back in 2010...i had turned 20 a few months back only. The symptoms were the same very severe and sudden pain which disappears but wen it returns...it returns with vengeance. Initially docs told me i had kidney stones and etc etc...it was the ultrasound that was decisive. The doc informed my mother and i was immediately operated within 2 days of my admission in the hospital. I had the same open surgery...and recovery was difficult since i had my college exams. I gave my practical and theory papers just 20 days post surgery.

And oh i forgot to mention...i lost my LEFT OVARY and FALLOPIAN TUBE...Apparently they were twisted 5 times. Wat can say...life post operation is tough...it's hard to wake up each day and not to think about ur only other ovary. U can't gain weight...do watch everything u eat....exercise is very important..even if it's light. I never used to worry abt these things before. But after surgery and loosing one ovary these things have become tough. U can't rely on contraception pills for hormones...coz they r harmful in the long run.

All i can say u hang in there, maybe things will become alright eventually...best wishes to u...and continue ur fight!!!

5

I lost an ovary 23 years ago after having a 10cm Ovarian cyst which suddenly appeared at the end of my first pregnancy when I was 28. No one could find out what was wrong and I was in agony as my baby was kicking it too.  I was finally diagnosed 3 weeks after giving birth and had it removed along with my left ovary and tube and apparently it had twisted and cut the blood supply off hence all the pain I'd gone through.  I was fine afterwards, no problems at all and within two months of surgery I was unexpectedly pregnant again eek   I also went on to have another baby when I was 37 so one ovary can work as good as two lol   I've recently had another cyst so had a  total hysterectomy last Monday smile  

6

Hello ladies

I was wondering whether anyone would be able to share with me how the surgery affected them afterwards.

Here is my story

i'm 27 and for approx 6 months i suffered pains such as lauren describes.  Bad period cramps mixed with a poorly stomach.  I was eventually rushed into A+E for the second tie in a week where they did a scan and discovered a large mass in my abdomen.  I also had a significantly high CA125 count and Ca199 count.  They were going to do an emergrncy hysterectomy, which i wasn't keen on due to being only 26 at the time and not having had children yet.  They managed to do further tests and discovered that not only did i have a mass on my left ovary but also my right.  Due to the high CA125 count i had to have a frozen section(where hey test the mass for cancer during the operation). 

I went in for surgery not knowing what i would wake up to, it was pretty scary, but thankfully i was one of the lucky ones.  Both my cysts were benign.  I did however lose my left ovary and falopian tube, 3/4 of my right ovary was removed and it was reconstructed and i also had a omentectomy where they remved the fatty wall protecting your stomach and internal organs.  was the best case scenario considering i had a 25cm cyst on my left and a 16 cm one on my right. 

My big question is to everyone out there who has gone through this,

do you still get pains on the side where your overy was removed, did your periods become irregular and abnormally heavy and does your sex drive ever come back.  I have had further check ups, scans and they have tested my hormone levels and the gp says all has come back fine.  But something still just doesn't feel right to me.

I have just been referred to a specialist again, so who knows what other tests might well be done.

I hope anyone going through anything like this has the lucky outcome i had.

 

7

Hey Lauren!

To know that you are on your third cyst must be so painful and I hope it is your last one!! 

I was wondering if you guys could shine a light on my situation. I am 19 and have been diagnosed with a 35cm(yes... It is huge) cyst on my left ovary. I have surgery next week with my ovary,cyst and tube removed. I am very nervous and if you guys could tell me what to expect from the surgery, when I wake up, after the surgery, when I can exercise again and anything else I should know. I am currently in University and I play hockey. I should have a good 6 weeks recovery from the surgery and until I start uni again. 

Ps - I am getting my bikini line slit open rather than a vertical line down my stomach which I should have but I rather young so the doctor recommended against it. 

I would be rather grateful for any advice 😊 

Thank you x x 

8

That's horrible!! I'm 16. One night I was having horrible stomach pains and my mom took me to the hospital. The doctors told me I was super constipated and they tried everything to help me. I went home that night in pain. I went back to the hospital 3 days later and they did a cat scan on my stomach and found a 9cm mass on my right ovary. That was 3 weeks ago. The doctors are telling me they want to see if it goes away on its own. But they did some blood work and one of the tests came back abnormal. I'm super scared. And none of my family gets it. My step dad is being so mean. He hates having to take me to the doctor. I have an appointment Friday at the obgyn. I hope they take it out. But it doesn't make me feel any less scared. 

9

Hi.

I was diagnosed with a 10cm by 8cm cyst on my right ovary in September. I had scan and ended up in a&e in Oct/Nov with pain but sent home telling me it was constipation. On Thursday 4 December I was rushed to hospital I was in so much pain and couldn't move apart from being sick. I was in constant pain all Thursday and the morphine didn't make any different. In the end the following day I had emergency surgery to remove the cyst as it had twisted 3 and a half times round my ovary. Unfortunately I had to have the ovary and my tube also removed. I'm now day 4 postop, I'm sore and still have not got the feeling back in my belly. It's getting better every day. I was just wondering how long it took for everyone to get the feeling back? Also how long it took you to fully recovery from the surgery?

Nikki x

10

Sorry to hear what you're going through. I know how it feels. If I'm entirely honest. The feeling in your tummy doesn't come back for a good few months at least in my case anyway. I'm to years down the line and still have 2 numb patches. As for recovery. I would say a good 12 weeks before you're properly all healed. I was out for about 5 months but I had infections and damage to some muscles which is why it took longer. Hope this doesn't all scare you but I thought it best to be honest with you. Make sure you rest and let others help as much as possible. The more you walk around and try the easier it gets xxx

11

Thanks that helps. You don't realised how worn out you get from just moving around lol. Sorry to hear of your complications and hope your doing well now xxx

12

Hi Folks, I am for surgery in the next few weeks formy cyst.  Its open surgery and I am extremely anxious.  Is it very sore post surgery? I am worrying about having IV lines and drips in also.  I am also pregnant and they need to do the surgery so after christmas I will be going in as soon as I can get a date.  I am on cancellation list at the moment but I am so scared of surgery, the aftermath and obviously my baby.  Can anyone help or let me know their experiences on how painful it was after surgery.  Is it difficult to get out of bed etc?  Did you need an IV for long in hospital and did you have cathethers in for long?

13

Hi

I had open surgery Friday. Four hours after surgery they took my cathether and got me to get up and go to the toilet. If I'm honest it's the best thing coz the more you move around the easier it gets. The first few days it was uncomfortable getting up but again it gets easier, I'm day 5 from surgery and doing well. I came out of hospital on the Sunday morning, as long as your eating, moving around and going to the toiley by yourself they are happy to let you go home. I felt so much better being at home. I had 2 ivs, but they were removed the next day. I'm not really in too much pain, my belly is still numb, but have been getting a burning sensations on my belly. I have been told this is just the nerves coz they can get cut in surgery. All I can advise is to just rest as much as you u can and your body will tell you when you have done too much xxx

14

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!

15

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!!!

16

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

17

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

18

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?

19

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!

20

Hi there!

I have been having a lot of pain on the side they did the surgery. The doctors say is normal for the first year, because it is still sensitive. My period is still heavy, but I am taking birth control to lessen it. Personally I didn't have problems with my sex drives, but sometimes my ovaries start hurting when I am having sexual intercourse. Please let me know how does your follow up goes. My doctor has not been much help with my after pains.