Coping with Ovarian Cyst(s)

Hi aliceb,

I would not hesitate to go to A & E if you have any severe pains. They may give you a CT scan while you are there.

Don't try to diagnose yourself as you could be completely wrong about what is happening inside. But I found going to A & E worked for me and eventually got my surgery date forwarded. Hopefully you won't need this but don't think you are being a nuisance by taking yourself along to A & E.

Also you are probably doing far too much and have your hands full juggling with all balls in the air. You must be stressed and that can't be helping.

Ann X

Hi Ann, thanks for your reply. I know you're right about self-diagnosis and I definitely would go straight to A&E with severe pain but at the moment it's just the mild/moderate symptoms that I feel isn't an emergency, despite feeling like there is ticking timebomb inside me, and feeling generally unwell. I am really trying not to stress about everything. I think I'll also go back to the GP after my show opening is out of the way and see what they say, although I suspect they won't do anything about it.

I thought I'd update this thread and ask for any more advice please!

I went back to my GP with the current symptoms of right sided pain and back pain, nausea, fatigue, dizziness, bloody discharge and night sweats. I also have an annoying right eye twitch but that's probably just tiredness/stress! He did my BP/HR and temp which were all normal and checked my ultrasound referral which was made 4 weeks ago and said he'd chase it up and ordered my some blood tests to rule out cancer and endrimetriosis. He also did a pelvic exam and brought tears to my eyes squashing the site of pain on the right so offered me tramadol which I can't have whilst breastfeeding.

I phoned up the ultrasound dept at the hospital to see if they had my referral which they did and they advised I phone the appointments centre, which I did and they booked me in for Saturday. Just like that! I didn't know you could do that once they had your referral otherwise I would've done it days/weeks ago. Goodness knows how long I'd be waiting otherwise.

So it's a waiting game still, but at least I have some tests/scans booked to look forward to... In the meantime I'm struggling with the pain. I'm on maximum dose paracetomol and ibuprofen and have my hot water bottle alternating between front and back which helps a lot.

At the moment I find sitting and driving particularly uncomfortable but even lying down is bad. When I wake up first thing I need to take painkillers straight away. I'm due to go into work tomorrow which is desk bound pretty much. I can get up and walk around but it's 6.5 hours at a desk. I could self-certify, but if the pain persists into next week I'd need a dr's note which I couldn't get pre-surgery last time - they just gave me tramadol (which helped!). I don't even have the confirmed diagnosis yet, although I was in the same job when I was ill with them last time and had months off in post-surgery recovery, so it's possible they will be understanding... Also I should have a diagnosis by next week and possibly even an op date (maybe slightly over-ambitious there) so the work situation may be clearer.

Any advice??

Hi! Weird they still dont have you diagnosed, have they done a scan? sending hugs !

Well the GP concurred with my self-diagnosis that it is *probaby* cyst(s) but until I have the scan (this Saturday) we don't know for sure

So I had my scan and surprise surprise there is an 8cm cyst on my left ovary. Surgery it is then.

Oh sorry to hear that Alice! You sound like you are in so much pain?! Would you consider feeding the baby formula instead so you can take the tramadol? You could always express a load before you start taking it. Although I dont know how long it stays in your system for for you to go back to breastfeeding later on....

Have they given you a surgery date yet? or any further scans?

Hope you are ok!

Thanks for the message. Yup the pain is quite bad. I'd say 3/10 with paracetomol and 4/10 without but it is constant so really draining. The GP is referring to gynae consultant tomorrow so just waiting to see what happens with that - whether they will give me a surgery date automatically or need to consult with me first about options. I definitely need surgery. At 8cm I doubt they would even consider leaving it as is.

I've got a stash of expressed milk in the freezer and at nearly 13 months he could have cow's milk instead (he already has a fair bit of cow's milk anyway) but it's the other emotional/comfort/habit aspects that worry me for him. He's cutting some more teeth (molars - the joys) and has a bit of a cold plus has his next round of immunisations tomorrow. He's already been super whingey even before imms and breastfeeding really helps him cope. The teeth/cold have affected his balance so he's falling over more and banging his head so every time he has a big bang he goes straight on the breast to soothe him. He's been up all night in pain and having feed him to sleep every time the only other option we'd have is to bring him into our bed to settle him which we might have to do in the short term and hope it doesn't become habit! It's bad timing to stop breastfeeding him now - he won't understand why he's being denied his main comfort. I'm hoping by the time to surgery comes through the cold/teeth/imms will have settled down and he'll be sleeping through again which will be alot easier all round! It might sound like martrydom but I think I can cope better with my pain than his pain that I can't soothe the best way we know how

Oh I totally get that... bless you it must be so difficult!

I think you are right if it is that big, as a rule I think if they are over a certain size they have to come out. I have had loads of appointments since feb and I have not got a surgery date yet so you might have to wait a bit longer for surgery I hope not though for your sake.

It might be longer for me as I am going on holiday on April 8th which they know about, but if I have to call that off I need to know ASAP!!!

Is your appointment with the gynae tomorrow or that is just when your dr will refer you? Fingers crossed it all goes through quickly for you!

Yeah I think they reckon over 5/6cm it isn't going to go away by itself. In 2012 I had about 10 day wait from A&E admission to surgery and I went home and even back to work for a few days before symptoms (similar to now) kicked in. But NHS resources have been cut by this retarded government and waiting list might well be much longer. It was touch and go last time whether my op would be emergency but it was definitely a priority due to urinary retention and priority = 10 day wait! This time who knows. I will be phoning by the gynae consultant and pestering them for sure as soon as I know referral has been made. It's just the GP referral tomorrow as in the paperwork.

Sorry to hear about your long wait - it's awful being in the dark; life is just on hold isn't it?

Omg! That's mad...... I hope that you get seen soon??? I was seen quite quickly by the gynae once the go referred me so hopefully you will be too. Did she say what type of cyst it is?

Yes it's a pain because I am so worried. With any luck I will know pretty quickly what they think of everything after the MRI!

No specific diagnosis as yet, but neither was the last one. All we know is it's fluid filled (by ultrasound scan) and blood tests have been negative for cancer and endrimetriosis. Same as last one. I hope they are speedy with the referral. I guess it's up to gynae to decide how to prioritise, presuming admin referral process is done correctly and without delay I know being refered back to GP for referral to gynae is the long route round, adding days to the overall referral process. It's just a bureaucratic nightmare. If the referral had come from another hosptial dept eg A&E it would've been processed much quicker. Anyway, it's well underway to being sorted now, no point in ifs and buts. I just wish the govt would the NHS properly.

*fund the NHS properly

Hi Alice,

I m sorry about your long wait....Wish you good luck for your appointment tomorrow,

Could you please tell me which blood test you did ... My ultrasound says that my large cyst may be an

endometrioma but is not a final diagnosis ... I know for fact that CA 125 is not option for me since I'm 25

weeks pregnant.

H Montreal, I think it was for the CA125 protein which also shows up with IBS and entrimetriosis as well as ovarian cancer but they also tested iron levels and thyroid function due to reporting dizziness and fatigue. Sorry to hear about your cyst during pregnancy that must be extra difficult to cope with