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Ovarian Cyst Support Thread?

(87 Posts)
Sharl2017 Mon 08-May-17 08:37:45

Has anyone on here suffered with ovarian cysts & had to have it removed before? What were your symptoms?
Mines 9cm left side.. causes bloating all the time, intermittent pain, I've had a dead leg from it, headaches, felt sick. I have ibs but the symptoms are very similar to that which doesn't help. I'm tired all the time. I have my operation next month and I'm definitely becoming more nervous as I get nearer to it.

Izzy24 Mon 08-May-17 08:46:55

I had a large one (large grapefruit size).

Symptoms were needing to p/u often but painlessly (so not cystitis) and when I was lying down I could feel a large lump on the right side above my pubic bone. I could see it too, but it wasn't there all the time.
This was because when my bladder was empty it 'disappeared '.

From USS it was thought most likely to be a dermoid cyst which turned out to be the case.

Didn't stop me being very anxious until it was out and confirmed though.

Took about 4 weeks to recover from op.

You'll feel better on every level when you're the other side of the operation.

Sharl2017 Mon 08-May-17 09:06:48

Gosh that's much longer than I anticipated for recovery. Did you have yours done through keyhole?
I can't see or feel mine, people just think I'm pregnant!

runawaysimba Mon 08-May-17 09:27:33

I had an 8cm one removed from my right ovary last week via keyhole surgery.
I still feel a bit tender in my bellybutton from the keyhole site there, but I can't believe how much better I feel otherwise - I was diagnosed after I had crippling pain in February and though the pain had got much better, I'd forgotten what it was like to be free of pain and discomfort!
I was nervous before surgery, too, but it was great - the worst thing was that they wouldn't let me eat until my bowels moved, and that wasn't until the following morning. shock

Sharl2017 Mon 08-May-17 10:04:26

Oh that makes me feel so much better. They found mine in February too. I'm excited for it to be gone but a little nervous for the actual procedure. The not eating makes everything worse for me ha cake

Pleased you're feeling better already simba

Izzy24 Mon 08-May-17 11:14:05

No not keyhole - too big. Same place as C/S incision. Recovery was fine although had to make a conscious effort to stand up straight as I wanted to curl over instinctively!

Am truly fine now.

The worst part (and I hate to bash NHS staff again) was the mean spirited attitude of the senior staff nurse who apparently had no insight whatsoever into the fear factor of what the cyst might turn out to be.

Happily the doctors were, without exception, kindness personified.

So that was good !

Sharl2017 Mon 08-May-17 16:00:16

Oh No Izzy , hopefully they do mine successfully through keyhole! I'm hoping to be out the same day but I don't go in until the afternoon. Ignorant staff definitely don't help in these situations!

Hope I do feel better quickly after like everyone keeps telling me.

Itscurtainsforyou Mon 08-May-17 23:12:20

Hi there - I'm waiting for a scan to confirm ovarian cyst(s). I'm having lots of symptoms, constant severe bloating (can't do up the only pair of work trousers that fit), urgent need to wee, stabbing pain around ovary area, etc etc. I had a huge cyst before, had surgery to remove it but it had disappeared (wish they'd scanned me before the op!).

Can I ask a few questions?
- how long was it between having an ultrasound and getting the report to confirm or did the sonographer give you an indication at the time?
- how long did you have to wait between diagnosis and surgery?
- did you have keyhole or not & what was your recovery time.

Also, sorry to ask this. I've been beside myself with worry about this. Can they tell on the ultrasound if it's a relatively harmless cyst or something more sinister? Or would further tests be necessary?

Thanks very much

user1494281559 Mon 08-May-17 23:39:01

Hi, no useful information to add I'm afraid, but in a similar position. Started with raised CA125 so had urgent scan and was told cysts. Sent for repeat scans 6 weeks later which lead to gynae referral. Gynae sent me for MRI which I had about 5 weeks ago and just had letter for follow up appointment which is in another 5 weeks! Presuming that the long wait time means nothing obviously sinister but would prefer not to have to wait that long to find out results! Ditto curtains' questions - how long did it all take for others?

Kateallison16 Tue 09-May-17 00:01:59

Ive had two. First one held 23 litres of fluid and was around half a meter round.
The second one happened while pregnant and ended up 15litres before it burst.
Both cancerous cells but im alive and kicking now.

First signs: bloated, heartburn and pelvic pains.
Swelling, stretching skin, fluid on legs, sickness.
Took ages to diagnose due to the fact i was still a child really (18)

My operation (first one) was pretty straighy forward. Slice, drain and pull out. Was done by a fantastic surgeon. Symptoms went right away once healed.

Second was far more complicated and didnt have a happy ending so i wont get into that.

Between diagnosis and surgery it was 2.5 months ish first time.

My second op has left me with a scar from the pelvis to just above the belly button. Had chemo after (2 types)

It was assume both my cysts were non cancerous but that was very wrong.

I know my experiences with them is highly unusual though.

Best of luck op

user1494281559 Tue 09-May-17 00:15:09

Op, hopefully you'll feel loads better once you've had the operation!

Waiting so long for results I have wondered if it's vanished, then have a day with stab/ache/sore down leg/bloated and hot water bottle attached! So perhaps not!

Sharl2017 Tue 09-May-17 07:17:41

My symptoms are very similar to yours curtains but they've also varied so much and still vary day to day. I can no longer where trousers or tights so I'm living in leggings and I've raided the charity shops for baggy tops and dresses.
Oh my gosh that's crazy! Poor you having to go through it all when it left in it's own anyway! flowers
They found my 9cm cyst in Feburary via ultrasound and asked me to come back in April to see if it had disappeared. When I went in April to Gynae they scanned and found it was the exact same size so the consultant spoke to me about operating and has booked me in for the first week of June so it'll be just under 4 months from finding it to operating as long as it doesn't get cancelled etc.
They ran blood tests when they first found it but never discussed the results with me so I assume everything was as it should be there.
Mine will be key hole and they're hoping I'll be able to return to work after 1 week.
I believe it's the blood tests that tell them if it's more sinister but I'm not sure & have put that to the back of my mind as I'm only 24 and have no children yet. On the second scan she did press around more and said it was to see if she could get blood flow to it which she couldn't as it's more complicated if it has a blood source.

user it does seem a long time but I'd take that as a good sign.. doesnt stop you worrying though. I didn't have to have mri so not sure how that works or what they're checking for there. Yes exactly i had no symptoms yesterday but I did over the weekend and I'm not holding my breath I'm sure it'll remind me it's there again with a vengeance in a day or two.

Oh no kate sounds like you've had terrible experiences. Hopefully you're all clear now
flowers Thank you for sharing!

MelaniaMacron Tue 09-May-17 20:46:22

I've got a 6cm one, up from 4cm in December and 2cm in September. So I am guessing that I will need it removed at some point soon. DD2 was pressing heavily on it during pregnancy (she's now 10wks old) and it was unequivocally the worst pain of my life.

Are there any recommendations out there, though, on the wisdom of TTC with an ovarian cyst? wink

ijustwannadance Tue 09-May-17 21:00:51

Years ago I had a 10cm one then but got pregnant before hospital app. By 12 week scan it had gone.
Have an app for a scan next month. Yes to the heartburn, nausea, bowels feeling blocked/squished, shooting pains down leg, stabby pains. I hate looking bloody pregnant too. Belly feels hard rather than flabby fat.

Chocolateorangegoblin Tue 09-May-17 21:06:17

I had two dermoid cysts one on each ovary, about 9cm each. No symptoms really and they were only found at my 12 week scan. They told me they would take them out after the baby but I ended up with an emergency section and they took them out then instead.
I was told they were dermoid cysts and they haven't come back 4+ years later.
Good luck to you OP!

Sharl2017 Tue 09-May-17 22:14:45

melania They found mine when they found I'd lost my early pregnancy. I was told to stop TTC until after the operation as they want my ovaries to be as healthy as possible before I conceive again. So disappointed and frustrated.
Hopefully yours disappears again dance the symptoms are horrendous. I'm fed up of being uncomfy, tired and bloated ALL of the time. sad
Thank you chocolate

Reallybadday Tue 09-May-17 22:43:18

I had an 8cm one removed about 18 months ago. The blood test (CA-125) aS negative but I was very worried about the surgery. In the end, it went well and the biopsy results were good. My left ovary was removed during surgery (incision over my c-section scar and 2 keyholes through belly button and on my bikini line). I was off work for a week and took a further 3 weeks before I walked normally.
I now have another cyst which they are monitoring. I'm starting to need to pee urgently and feel more bloated so I think it is getting bigger. Just don't want to lose the other ovary and face early menopause though. I'm not far off menopause probably but I like to think I'm too young smile
Hopefully you'll feel much better after your surgery, Sharl2017.

Marvellousmarg Tue 09-May-17 22:51:25

I had one removed two years ago. It was a Dermoid cyst and was around 6cm, made me wee lots.

It was removed by keyhole surgery. It was around a 3 week recovery. Op was fine. Worst bit was the trippy painkillers afterwards.

I have another now, it's being monitored, it was just under 5cm.

I have another scan on Thursday. Praying it's still too wee to do anything about. Or better still just disappeared! I have no symptoms yet.

Sharl2017 Wed 10-May-17 07:27:31

reallybadday did you know before surgery they was going to remove your ovary? Thats one thing thats terrifying me. I know you can still conceive with just one ovary and they did tell me 80% pregnancys come from the right ovary and this cyst is on my left but it scares me that they're going to get in there and start taking extra bit that I wasn't warned about because something goes wrong or they didn't know before.
Hopefully they keep monitoring you and you get good results at your next appointment. Good luck & thank you flowers

Sharl2017 Wed 10-May-17 07:30:58

Fingers crossed for Thursday marvellous my symptoms were very few but then since my second scan and being given the date for the operation I seem to have developed lots ha. A lot of the symptoms are similar to ibs so I just thought I was having a flare up until I realised and was able to pinpoint things more.

Reallybadday Wed 10-May-17 11:12:33

Yes, Sharl2017, I was told that it was VERY likely I would lose the ovary and possibly have a full hysterectomy depending on what they found once they had a look inside, due to what they could see of the cyst on the scans. I was rather pleased to wake up with the right ovary and womb intact grin
IMO the consultant is more likely to give you the worst possible scenario just so you're prepared. If you haven't been warned of something and you're concerned, ask them. Good luck to you

Endlesslllove Wed 10-May-17 11:25:41

I have an 8cm dermoid cyst, it caused me 5 days of pain around the time my son was conceived but no problems since then. I'm due to have it removed in a few months but very worried about the recovery as dc are 1 year old & 3 years old. I'm tempted to put it off because I have no symptoms at all but the consultant said it ought to be removed in case it twists and becomes an emergency sad

Sharl2017 Wed 10-May-17 12:42:30

That puts my mind at ease a little bit reallybadday. It's one of those things were I know I'm silly worrying about it as there's nothing anyone can do until the date. They reassured me when I asked all the questions before but it's still playing on my mind lol.
endless oh bless you. If it twists or bursts it'll be excruciating pain and will mean emergency surgery anyway so it might be best to know youre surgery date so you can recover quicker and arrange childcare etc. I didn't have any symptoms when they first found mine but they certainly appeared with a vengeance!

MelaniaMacron Wed 10-May-17 19:57:14

Arrrrrrrrghhh am nervous now. When I had the scan on Monday, I was told clearly and emphatically that the cyst was Nothing To Worry About. This afternoon, I received a call from the GP surgery summoning me in first thing tomorrow morning.

The thing is, I know how chaotically the NHS works. The last time I went through medical investigations for something probably-benign-but-potentially-life-threatening, the tests all came back with the 1:100000 worst case scenario, and they still lost my file and took a fortnight to summon me in at a minute's notice. Is this just the NHS being efficient? Or do I have suspected cancer??

<hides Twitter's OC thread>

Reallybadday Wed 10-May-17 20:47:09

MelaniaMacron, try not to worry.
It's probably just that they have got your scan results back, they need to discuss them with you (even though you were already told) and the GP happens to have a space first thing tomorrow. Hope you get told exactly the same as you did on Monday. flowers

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