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Original poster

Any ovarian cyst people about?

69 replies

SomethingOriginal · 17/07/2012 13:23

After two years of random flaring pains, I took myself off to the doctors who reckoned ovarian cyst(s)

Going back tonight to get the results from two sets of ultrsounds, and have a blood test on Thursday for what I'm assuming is a procedural check for cancerous cells etc...

Just wondered if I could have a little bit of hand holding, and anyone elses experiences please?

OP posts:
mrsmusic2 · 17/07/2012 13:47

Hi Something Original. I was found to have a 13cm ovarian cyst on one ovary some years ago. Like you I only had random sharp pains which I had diagnosed as IBS.

I ended up having a bilateral cystectomy (they found another small cyst on the other ovary when they opened me up). TBH the operation wasn't very pleasant and it took me at least 6 months to get over it but I went on to have two healthy children. I can't remember the consultant saying anything about cancer TBH as I think most cysts are benign. Don't worry too much about the blood test, mine showed some markers I think they're called but everything was fine. HTH

Abzs · 17/07/2012 14:00

If they're diagnosing ovarian cysts you'll probably have blood tests to check your hormone levels as that can be affected too. I also had blood tests to check for ovulation to find out if the suspected cyst was affecting the function of the ovary.

mummatotwo · 17/07/2012 14:14

also ask about endometriosis - I had very bad pelvin pains on and off. Had internal scans which revealed cysts to the left ovary and endo

Original poster
SomethingOriginal · 17/07/2012 14:31

Thanks for your replies, all the information I've had has been from the sonographer..

Like, yes there is a cyst there

...and "ooh, you have a heart shaped uterus" err, thanks I think? Hmm

I think it's just the waiting aspect to find out the next plan of action!

OP posts:
orangeflutie · 17/07/2012 19:21

Hi SomethingOriginal sorry you have a cyst:(

I have one too, my third over a timespan of about two years:( I will be having surgery to remove it and my left ovary in September as I think that as they keep coming back on that side my chances of having yet another one are reduced if the ovary goes aswell.

As you've just had your ultrasound, the next step will most likely be a referral to a gynaecologist for a consultation. Did the sonographer tell you how big the cyst was? Mine did although I had to struggle to stay on the couch as I'm quite tall and due to NHS cutbacks the couch was shorter than the last time I went!:)

Generally cysts are removed if they are over 4cm or more. My last two were about 4-5cm and each time I've had them removed by keyhole surgery. I went in to hospital early in the morning and was out by lunchtime. You are quite sore afterwards but the recovery time is shorter (about two weeks), than open surgery.

Hope this info helps a bit. You're welcome to PM me if you need to.

ohChristFENTON · 17/07/2012 19:28

I had one about 20 years ago, they went in with a camera (laparoscopy?) before the op to see where and how it was attached. It was on my ovary and the tube about the size of a grapefruit, so all removed, had a zip stitch and signed of work for 6 weeks (although I felt this unnecessarily long).

Have had two children since, the remaining ovary has kicked in to do the work of both.

PaddingtonBare · 17/07/2012 19:34

I also has a grapefruit sized one on my ovary about 14 years ago. Had it photographed, measured and recorded prior to surgery to remove it. When surgery day came, the cyst had gone - apparently very unusual to get such a large one that disappears all on its own :)

causeforanamechange · 17/07/2012 20:19

I had a cervical cyst removed about 4 months ago. Obviously it's not the same as an ovarian cyst, but I know how you feel waiting for the results. I couldn't sleep and was a bit of a state actually.

You've got to remind yourself that statistically, the chances of it being anything nasty are very small.

Chances are on your side, remember thatSmile

Original poster
SomethingOriginal · 18/07/2012 08:35

Hi orangeflutie , yes my next step is a gynae consultation, which is in a couple of weeks

Although the doctor gave me the measurements, from first scan to the second it has just bumped over the 4cm mark.

I was quite glad that she thought to mention that the blood test will come back as elevated purely because I do have a cyst... otherwise I may have panicked slightly haha

Thanks everyone, I'm just glad the process is moving on swiftly! Smile

OP posts:
mrsmusic2 · 18/07/2012 09:28

Good luck, I hope everything goes well for you.

51wksApart · 18/07/2012 09:32

I'm in exactly the same situation as you! Have had the diagnosis of a large cyst on my left ovary and nothing on the right (despite requesting consultation for pain on the right.....). I also need to have a blood test for CA125 which is an ovarian cancer marker and am heading back to the obstetrician in october. From what I have googled (naughty I know) then large smooth edged black blobs on your ovary are the most normal kind of fluid filled functional cyst? Did you see what yours looked like? I didn't know that the blood test would come back elevated! good to know :-)

Bashfulblue · 18/07/2012 09:37

I had two cysts on my right ovary two years ago - I think the bigger one was about 5cm and the other was about 3cm. I only knew they were there because I have the mirena coil and my periods suddenly changed, from v light to much heavier and painful. I was monitored for about six months and they got smaller so I was signed off. I also had the blood test, which was good because it eliminated the chance of cancer so I didn't have to worry! Nobody talked about removing them at that size.

Anyway now I've got similar symptoms again (but with what feels like ovary pain this time), so I'm going back to the Dr this week and I imagine will have to start the whole tedious process again. Apparently the mirena coil causes cysts so I'm wondering if I should even keep it.

Having said that I keep reading that cysts are very normal and harmless things to get....

Good luck - let us know how you get on. We could have a cyst support thread!

Original poster
SomethingOriginal · 18/07/2012 09:59

I tried to get a good look 51 but it just looked like a blob to me

( a blob that she'd magnified to stupid proportions may I add! She swiftly zoomed out after the look on my face I imagine)

Most cysts do tend to be harmless, but because this is causing pain the dr recommended a referral.

Actually, I only went to the dr because DP saw me in the midst of a flare up, otherwise I don't think I would have went... scary really.

Painwise started off like intense period pain and cramps, but got to the point where I'd wake up with a circle of burning pain all round my back and lower abdomen.

It's funny now that I'm aware of it, as it feels more "grumbly".

Might just be my mind playing tricks on me Smile

Good luck everyone too! Cyst support thread it is Smile

OP posts:
Bashfulblue · 18/07/2012 10:15

Yes I've got that grumbly feeling too - on both sides, which is weird. I have to confess to being a terrible google hypochondriac, so ever since I read somewhere that the symptoms of ovarian cancer are very hard to detect but include bloatedness, I've been far too aware of that area of my body! There is definitely something going on though - my last period went on much longer than normal.

Would be so nice to be a man at times like this!

orangeflutie · 18/07/2012 13:29

It's funny but I knew I had another cyst as soon as I became aware of a burning pain in my hip again. The last few days the pain has been particularly bad as I have my period and it's most noticeable when I'm sitting still or lying down in bed. I've had to take diclofenac and have a hot water bottle on my tummy.

When I saw my doctor for the first time about the pain she asked if it was a background pain that gets worse sometimes when driving or hoovering and it is exactly like that. I'm also aware of pain in my back too.

I would really like it gone now!

A support thread is a very good idea.

Bashfulblue · 18/07/2012 13:44

Is it always a burning pain, Orange, or do you have crampy period pains too?

I'd really like it gone too. Don't know if it's because I've been talking about it here, but just had a really bad hour or two of cramps. No bleeding, just really painful.

orangeflutie · 18/07/2012 16:13

Yes I get crampy pains too:( Sometimes if I'm really busy I can almost forget about it but I always get a reminder later on.

I'm really trying not to let it get me down but sometimes I'd just like to step outside my body for a while.

moomoo1967 · 18/07/2012 16:22

I had an Ovarian cyst removed Feb 2011.

In 2010 my doctor diagnosed me with fibroids but when I went for the ultrasound they actually found two ovarian cysts. I also had the C125 blood tests but they neglected to tell me what it was for so there was a panic when the GP asked if I had been given the results of my cancer tests ! it turned out that wasn't what the blood tests had been taken for but something else which I cannot remember.
While they were deciding what to do the cysts ruptured in the May of 2010, absolute agony, doubled over with pain. I went to A&E was given morphine but they said that hopefully now that they had ruptured the remains would be absorbed back into my body.

They monitered me with regular ultrasounds and in the Nov of 2010 the consultant decided that as the remaining one was growing that she would operate.
Because of all the scar tissue from my C-section the consultant wasn't sure if keyhole would work so I was prepared for full surgery. Luckily, once she went in she could do what she needed to do without opening me up fully.
I was relieved once the cyst had been taken out as I was worried it may rupture again. I was given 4 weeks off from work to recuperate.
Ask any questions you like, if I can help you I will

Bashfulblue · 18/07/2012 21:02

Thanks moomoo.

I can't see my doctor till Friday so it's nice to have somewhere to talk about this!

I guess my questions are: from what they said to you, is it normal for cysts to hurt? I keep reading that they mostly don't - I suppose we could all have them all the time and not know about it until they do.

And if they do hurt is that a bad sign do you think?

Original poster
SomethingOriginal · 19/07/2012 11:29

Bashful I dont think it's normal for cysts to hurt, I seem to think there's been people who've only discovered they have them when say, they have a cesarean for example.

Let us know how you get on tomorrow Smile

Mine where strange to begin with as in between flare ups I'd be fine, and almost forget about them. It's only now that it's constantly niggly and I'm always aware of that background level of pain.

It's good to hear what to expect if it does go down the route of removal, and that it doesn't effect fertility

OP posts:
moomoo1967 · 19/07/2012 16:28

Originally I went to the doc's because I was bleeding heavily every day, the doc examined me and thought I had fibroids but we now know it wasn't.
I don't remember having any pain relating to the cysts just really bad stomach cramps which were basically period pains I suppose because of the bleeding.

The bleeding turned out to be unrelated to the cysts and only stopped once they inserted a Mirena coil. I bled constantly for nearly a year except the last couple of months when the doc prescribed No........something.....it made my body think it was pregnant and stopped the bleeding.
The only pain I can remember in relation to the cysts was when they ruptured and obviously after the operaton to remove them.

moomoo1967 · 19/07/2012 16:30

hope that this isn't TMI when the surgeon opened me up she had to remove both the left ovary and fallopian tube as they were stuck to the cyst and diseased. At least the buggars can't rupture again

orangeflutie · 20/07/2012 11:54

Good luck with today Bashful

Hope your gynae appointment comes through soon SomethingOriginal

It's a month today until my pre-op.

delphinedownunder · 20/07/2012 12:15

I had my ovarian cyst removed three weeks ago. It was growing around my left ovary and Fallopian tube and so they have gone too. It was 16 cm in diameter. The surgeon said he had to wrestle it out! All done by keyhole surgery. My right fallopian tube went a few years ago as it was very diseased and so I now have a lonely right ovary floating around looking for its mates! I had two nights in hospital, but only because I live a long way from the hospital and there was lots of snow. The docs didn't want to send the rescue helicopter had there been a problem! I felt a bit fragile for about a week, but all good now.Had lots of discomfort and bleeding before the op - very pleased that all that has stopped. Ca125 levels were low but sadly, I was told this afternoon that the lab work on the cyst shows a small trace of malignancy, so I am back to the consultant next week for more advice. He is not a wait and see kind of man, so I suspect there is more treatment of some kind to come. Given the poor state of my bits and pieces and ongoing probs of this nature, I consider myself extremely lucky to have my lovely twins and am ever thankful to the doctors who helped me and the Ministry of Health for funding my ivf.

lookbutdonttouch · 20/07/2012 17:22

Sorry to read about all your troubles ladies. Delphine I hope you get good news next week.

Bashful how did it go?

I have had three complex cysts removed now, I am 35. Mine all hurt like hell, crampy burning pain in abdomen and down into pelvis and hips. They all caused random bleeding too. Please dont panic that cysts are going to be malignant just because they hurt or bleed 'differently' to someone elses....

In all three of mine I had the cancer marker blood tests and then had the cyst removed by keyhole surgery. One was a battle and the other two were easy - according to the surgeon. None of mine were malignant luckily.

I have to go back to GP all the time and have scans all the time because my pain and bleeding is all over the place and never know what they may find.

Google is never your friend....

Good luck to all of you.