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Original poster

Ovarian Cyst Support Thread?

86 replies

Sharl2017 · 08/05/2017 08:37

Hi,
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.

OP posts:
Original poster
Sharl2017 · 15/05/2017 21:01

I'm a bit confused as I never had the mri scan or anything other than the 2 ultra sounds before they decided they want to operate. Confused Do you think it could be because mine was found when I lost my early pregnancy rather than just out the blue?

OP posts:
Marvellousmarg · 15/05/2017 22:29

Maybe they don't do MRI anymore. My last op was two years ago. Lots of cuts in NHS since then.

I think also there was a question mark over what type of cyst I had last time so MRI was needed to look more closely.

Not sure what will happen with this one.

You can ask all these questions at the pre op. They are rally helpful and nice.

Reallybadday · 15/05/2017 22:44

I had three ultrasoundscans but no MRI.

runawaysimba · 16/05/2017 00:16

Yes, I had a CT scan to rule out kidney stones, which was their first diagnosis, based on my pain, and then ultrasound was needed to have a closer look at the cyst itself. No mention of MRI, which is fine by me!

Itscurtainsforyou · 16/05/2017 14:59

Well I've just had a scan which has shown very little! Small cysts but nothing they're prepared to do anything about. So I must be imagining all the other symptoms Hmm. But I guess it's good news that they've found nothing obviously sinister.

DubiousCredentials · 06/06/2017 14:45

Joining in this thread

I had an ultrasound yesterday for pelvic pain. 5cm cyst found and I was also told one ovary was polysystic. I was told there was nothing suspicious and I'd be called back for a rescan in 12 weeks to see if the big cyst had grown or shrunk. I was relieved and went on my way.

GP surgery has just phoned to say GP has arranged repeat scan BUT he wants me to have a blood test in the meantime. Booked in for end of next week now but my mind is in irrational overdrive that he suspects cancer. But surely if there was anything suspicious I wouldn't be waiting 10 days for a blood test and 12 weeks for a repeat scan would I? It was the receptionist/secretary who phoned so I couldn't ask questions.

DubiousCredentials · 06/06/2017 14:46

Radiographer said the cyst was thin-walled and another word that I don't recall.

DubiousCredentials · 07/06/2017 04:38

Anyone? Sad

DubiousCredentials · 07/06/2017 14:30

Just spoke to GP and he just said he'd requested bloods as standard after seeing cysts but the ultrasound showed absolutely nothing suspicious. One is to see if I have polycystic ovary syndrome and the other is the CA-125 one but he was very clear that it was just protocol to do that and he had no concerns. Phew.

purplecoathanger · 07/06/2017 14:41

I had a scan which showed a cyst of 9cm. My ca125 was normal. When the cyst was removed they said it was probably a fibroma. Two weeks later at my follow up, they told me it was a Granulosa Cell Tumour, which is cancer.

Not all ovarian cancers give high ca125 readings. I would advise anyone with a large cyst, to get it removed urgently.

Original poster
Sharl2017 · 07/06/2017 16:03

Sorry I didn't reply yesterday dubious I was in hospital having my cyst removed. The blood tests they do are routine whenever they find one. They did mine the day they found the cyst and then I went back 6 weeks later for the follow up scan.

Surgery yesterday went well. When they got in there they found a 2nd cyst on my fallopian tube which they drained successfully. When they tried to drain my original large 9cm one it burst but they've both been removed and I'm now cyst free and signed off work recovering for 2 weeks.

OP posts:
DubiousCredentials · 07/06/2017 16:58

No need to apologise Sharl. Glad the op went well for you.

ForeverHopeful21 · 08/06/2017 16:51

I was diagnosed with 10cm dermoid cyst when I had my miscarriage in March. Thankfully I’m on the waiting list to have it removed. They’ve already told me that my ovary will likely be removed too. I’m struggling so much physically, plus it’s a bit of a kick in the teeth that I still look and feel pregnant! I’m a self-employed massage therapist so I’m really worried about how long I’ll need off work to recover.

Random question …when you’re in bed, do you feel more comfortable lying on the side that your cyst is on or lying on the opposite side?

Original poster
Sharl2017 · 19/06/2017 11:10

forever is it just one ovary they are planning to remove? Do you know which one? They symptoms are horrible but when I came round i felt instant relief. I couldn't believe it.. but it could also just have been the drugs haha
I felt more comfortable laying on the opposite side. If I laid the side the cyst was it felt all heavy like it was pulling.

OP posts:
LRDtheFeministDragon · 19/06/2017 12:36

May I join in please?

My private fertility clinic found a big cyst six weeks ago. They told me to wait in case it disappeared (apparently very unlikely - so kind of them to waste my time). It didn't, and it's bigger. So they sent a letter to my GP asking my GP to refer me to hospital, and told me this would be a few days as it'd be treated as an emergency with risk of it twisting and me losing the ovary. GP, after much faffing about, finally admitted today they don't have the letter on file and need me to come in tomorrow to explain what's going on.

Why the fuck anyone can't use an email, given we live in the modern world, I do not understand.

Meanwhile I look about three months pregnant and it's fucking painful. And I'm a bit scared. Clinging to the thought that if it's big and fast growing it's probably just a cyst and not something worse.

Original poster
Sharl2017 · 19/06/2017 13:19

Oh lrd that's horrible. Hope they get you booked in to have it removed asap. Although I feel better since surgery I've comfort eaten too much so need to get back to a healthy lifestyle while ttc now! 😊

OP posts:
LRDtheFeministDragon · 19/06/2017 13:46

Me too! So good to know you feel better after surgery.

Can I ask, how long do you expect to wait before TTC?

Original poster
Sharl2017 · 19/06/2017 14:26

They told me to stop ttc once they found it. They said it isn't an issue if I am pregnant but they'd rather my ovaries where healthy to reduce the risk of mc/cp again so my dh and I decided to stop until after surgery.
I was told no sex until I'd finished spotting so now I've finished spotting and my period is out the way (luckily I was due the week after surgery) we've started ttc again. I don't know what they recommend but I wasn't told otherwise and the doctors knew we were TTC so figured we'd start ttc now and see what happens.

OP posts:
LRDtheFeministDragon · 19/06/2017 15:24

That's really useful, thank you!

Original poster
Sharl2017 · 19/06/2017 15:57

No problem lrd good luck hope all goes well!

OP posts:
ForeverHopeful21 · 19/06/2017 19:37

Sharl Yes just one ovary to remove. I also have a cyst on the other ovary too but they said that as it's small they might just leave it be.
I got a cancellation so I'm having the surgery next week. I'll be so glad to get it all over and done with. It's impacted my life so much.

LRD hope they sort it out soon for you. I've been petrified knowing that I have such a large cyst with a high chance of twisting. It's a horrible thing to live with! Fingers crossed that it's removed soon.

Original poster
Sharl2017 · 20/06/2017 11:09

When they went in to remove mine forever they found another cyst on the same side but in my fallopian tube so took that cyst at the same time. Hopefully your other one behaves and disappears as it should. Good luck with your surgery and recovery!Flowers

OP posts:
HappenstanceMarmite · 20/06/2017 23:11

Mind if I join the cyst club (cysters? 😂)?

I have a 9cm cyst which twisted around my ovary, resulting in emergency admission in January this year. No signs or symptoms beforehand. I've had 3 scans in total now as my Gynaecologist wanted to wait and see if it went if its own accord, or reduced. Well it didn't. He then said I could leave it as it is, or have it removed. I chose to have surgery because, left in place, it feels like a ticking time bomb that could rupture or torsion again and I can't risk that. Especially in my job where I drive 30,000 miles a year all over the south UK.

I did start a thread about this where I complained about the fact that my consultant refused to also do a hysterectomy at the same time as removing both ovaries. But I'm over that now and have decided to look at fiddling with my HRT instead (to deal with the heavy periods I still get ~at my age FFS~

So I shall follow your progress OP and wish you the best. Also anyone else here who is experiencing this rather large uninvited visitor to their reproductive organs 🙄

LRDtheFeministDragon · 20/06/2017 23:28

Ouch!

I'm so sorry, that sounds really scary.

I do think there's not enough awareness how scary it can be, is there?

PingaPenguin · 21/06/2017 07:37

I think there is some going on gynaecologically with me and I've wondered about a cyst.

Has anyone had worsening of PMT symptoms (both mental and physical) with a cyst?

I know they often cause pain but has anyone had pain that they only get around their period?

Over the last year or so I've had worsening PMT, and more recently I've had quite a severe pain in my right hip/pelvic region when I am due on my period and throughout the period (it is not, or nothing like my usual period pain)
Doctor has put my on the pill to help my PMT, which while my body has been getting used to it there has been more bleeding/spotting. I can always tell when this is about to happen as the hip pain starts.

I've had some intermittent bloating and feeling full too. Although this doesn't happen to often so it might be just coincidence (although historically I've never suffered anything like this, no matter what I eat)

I'm back at the doctors in a couple of weeks so I will ask more questions then.