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Women's health

Ovarian cyst - your experiences?

19 replies

KitXi · 14/06/2018 18:13

I had an ultrasound a few months ago which revealed a 6cm cyst on my right ovary. Referred to gynae at hospital, had initial consultation a couple of weeks ago. Dr said they were looking at surgery as it is quite big and has been causing problems (lots of pain, and bowel issues because the cyst is mainly in the pouch of douglas which is near the bowel - I found this out for myself as nobody explained it to me). I've had the CA125 blood test, and today had an MRI. This was AWFUL. They were supposed to inject me with contrast dye but my veins were so terrible, after several attempts from different staff they couldn't manage it. MRI went ahead with them hoping they'd be able to get the images they needed without the dye, otherwise it will have to be repeated. The MRI took an hour, which was horrible as I am claustrophobic.
I'm due back next week to discuss the results of the blood test and the MRI to see where we go from there.
Can anyone just discuss their ovarian cyst experience with me please? I'm currently fearing the worst, I'm incredibly stressed and very uncomfortable, and somewhat tempted to beg them for a hysterectomy.

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KitXi · 14/06/2018 18:14

Oh, meant to say the cyst has either grown or it was mismeasured, because the letter from the consultant said 8.5cm whereas the ultrasound report said 6.

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ScreamingValenta · 14/06/2018 19:02

Sorry to hear about your awful MRI Flowers.

Have the doctors indicated what they think has caused the cyst? I'm wondering why you are thinking of a hysterectomy. My ovarian cyst (7cm but like yours, seemed to vary in size over time) was an endometrioma; I did end up having a hysterectomy to treat the wider problem, but if the cyst on your ovary is isolated, that wouldn't seem to be an obvious route to go down.

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Ickyockycocky · 14/06/2018 19:29

My cyst was cancer but that was nearly five years ago. I also hated the MRI but the waiting for results is worse. Try and keep busy and do some nice stuff. It won’t stop you worrying but will help you to get by.

Just a word of warning, they tend to use the CA-125 as a diagnostic test but it can give false positives and negatives. My CA-125 was normal yet I had cancer. 💐

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ScreamingValenta · 14/06/2018 19:36

Ickyockycocky makes a good point about CA125 - it isn't reliable. In my case, I had a raised CA125 (150) but my cyst was benign. Ickyockycocky I hope you are well now Flowers.

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Ickyockycocky · 14/06/2018 19:45

I’m fine thanks 🥂

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Kraggle · 14/06/2018 19:52

I had an ovarian cyst removed about 4 years ago. It was found during my 12 week scan with dd1 and I had it removed when she was 10 months old. It was about 8cm and they told me it was a simple cyst probably caused when the egg was released that then turned into dd1.

I didn’t have to have an MRI, I’m sorry you had a horrible experience with that.

The actual removal was fairly straight forward and they managed to save my ovary. I remember waking up in recovery and my nose being very very itchy.

I had to have a laparotomy (horizontal incision rather than keyhole) which made recovery a little harder especially with a baby to look after!

My scar split open a little on one side but overall it was fine I recovered and was back at work within 8 weeks of surgery (they initially said I’d need 6 weeks but with the scar opening I had to take it easy for a little while).

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wintersdawn · 14/06/2018 21:14

I had a 6cm cyst last year that was causing pain and when they did an mri it was one of the nasty ones (can't remember name) so surgery was the advised option. Had it out keyhole and no issues since. Both ovaries still there and cycle never missed a month. They found something small on the other ovary when they went in and sorted that at the same time.

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Nat6999 · 14/06/2018 23:00

I had a 6cm simple cyst, I had keyhole surgery to remove the cyst, ovary & both tubes, I was diagnosed with endometriosis & had a hysterectomy 6 months later. Recovery from the cyst op was ok, I was back to normal within a week.

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flashnazia · 15/06/2018 00:18

If it's an endometrioma make sure you see an endometriosis specialist and not just any standard gynaecologist.

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twingygirl · 15/06/2018 00:25

I had a 7cm one removed keyhole and honestly, it was so easy I really regret not doing it when I first started having problems. I was so very frightened of surgery that I kept putting it off until I just couldn't anymore. The surgery was easy, in and out, barely a night in hospital, back to all my usual activities within a few days. Almost no post surgical pain...took two does of regular old ibuprofen and got on with my life. Felt a bit doozy from the anesthesia for a few days...that was the worst of it.

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2blueshoes · 15/06/2018 00:31

I had several simple cysts over the years. One removed during birth of my son.

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QueenoftheNights · 15/06/2018 07:25

It does depend on the size and if it's growing. Mine was under 5cm which is the stage at which they think about removal ( over 5cms.) If there are no symptoms, they use 'watch and wait' because many cysts disappear which mine did .

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cheeseandchoc · 15/06/2018 07:40

My cyst was found at my 12 week scan. It was 11cm. Consultant said he could either remove, drain or manage through pregnancy. I opted to leave it until after ds1 birth.
During the pregnancy it grew to 20cm. I was due to have it removed when I found out I was pregnant with ds2. At 17 weeks I was in serious pain, rushed into emergency surgery. My fallopian tube had wrapped around the ovary/cyst. Luckily they could remove through keyhole and I recovered quickly, baby was fine and have little scarring.
Sorry to hear you are going through this.

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KitXi · 15/06/2018 11:26

Thank you everyone.

ScreamingValenta hysterectomy wasn't exactly a considered response but I am just so fed up with the pain and other symptoms I want the whole thing gone! We've finished our family, dh has had the snip, I have no use for it. I'm fully aware though that it's unlikely they'll give me a hysterectomy for one cyst!

Kraggle is it too personal a question to ask why you needed a laparotomy rather than the laparoscopic removal? I am overweight and the consultant has said that they have BMI limits for surgery, but also mentioned laparoscopic versus laparotomy, I'm unsure whether they mean they just won't do the surgery at all until I have lost weight, or if they would do it, but not laparoscopically (is that a word?) I guess I will clarify that point when I have my follow up. It's a worry as I am trying to lose weight but struggling, the bowel issues mean a lot of food is just (sorry tmi) going straight through me and I think my body is rebelling and holding on to the precious fat supplies!

I think this one has been there a long time. Certainly cysts were discovered in my pregnancy scans , going back as far as six years ago now, but they didn't ask if they were causing symptoms, and even if they had my answer would have been no.

I'm on edge until Wednesday. Arms are really sore from the failed canula insertion attempts yesterday.

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Ickyockycocky · 15/06/2018 11:32

It partly depends on the size of the cyst and partly as to whether they want to have a look round and do pelvic washings, as to whether it’s open surgery or keyhole. I’m sure you will know more when you go back. Do let us know how you get on. 💐

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DoAsYouWouldBeMumBy · 15/06/2018 14:00

I had a dermoid - it was grapefruit sized, apparently ConfusedI didn't need an MRI, and it was removed by keyhole surgery. The op was simple, but I had what felt like horrendous PMT and depression for a while after - this caused me to gain a lot of weight, my cycle completely changed and my skin and hair got very dry, so I aged a lot. I've als

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DoAsYouWouldBeMumBy · 15/06/2018 14:01

--posted too soon! I wish I'd got more medical support at the time, but I was too busy shouting at DH and eating mars bars BlushBlush

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Kraggle · 15/06/2018 15:01

I’m not 100% sure why I had to have a laparotomy! If they explained to me I’ve forgotton sorry! It was quite large 8cm and they weren’t sure if they could save the ovary and Fallopian tube so think maybe the laparotomy gave them more space to explore?

I am overweight was prob around 17st and didn’t have to loose any prior to surgery.

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buntingandstarcharts · 16/06/2018 11:27

Hey ladies, I had an ultrasound this week and the sonographer said I had a simple cyst which will probably need removing as it is stopping ovulation on that side. I'm so sad as we have been trying to get pregnant and I'm worried that the removal of this cyst will require me to wait to conceive or delay conceiving due to recovery. I genuinely don't know any more details - even whether I definitely require the surgery (awaiting appointment with Gp to give me proper results) but can anyone tell me how quickly it is possible to get pregnant after cyst removal from inside the ovary?

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