Posted , 37 users are following.
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 likes, 42 replies
Beccy53756
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rhonda26759 Beccy53756
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LaurenZetta
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kirti84065 LaurenZetta
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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!!!
Miaamita kirti84065
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Miaamita
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janet0263 LaurenZetta
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fitzy87 LaurenZetta
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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.
gabee46923 fitzy87
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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.
rhi1234 LaurenZetta
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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
leeann48518 LaurenZetta
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nikki64152 LaurenZetta
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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
LaurenZetta nikki64152
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nikki64152 LaurenZetta
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janine1234 LaurenZetta
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nikki64152 janine1234
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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
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