Hi everyone again, just looking for anyone’s thoughts or experiences.
9 months of symptoms pain, bloating, heartburn and last 3 months have ramped up with August having new symptoms including heavy mid cycle bleed, left kidney type pains, increased bloating, pain in left ovary and all over tummy and back and leg pain! My period hasn’t arrived this month yet since mid cycle bleed so not sure what my ovaries are doing?
Had a private scan and found 53mm fluid filled cyst on left ovary! Everything else looks normal.
So Gynaecologist appointment today who says not cancer as CA125 normal! 🤯 and I shouldn’t be having all these symptoms for such a small cyst and not sure re bleeding as that’s weird.
Only way to understand is to do laparoscopy. He can see me privately for about £5k in early October or NHS clinic where it’s a 30-40 week wait!
Feeling much calmer about any immediate cancer risk though still mistrustful of a Dr who can say “well you don’t have cancer as CA125 is fine” so not sure I’m entirely satisfied!
He says cyst is unlikely to go by itself if it’s really been there that long and is causing all these symptoms and even if it did go he’d be looking at spleen, bowel, ovaries, stomach etc while he’s in there to see what’s causing pain, bleeding! Maybe endometriosis he said? I don’t identify with many of the symptoms of that though?
My mum has offered to pay for the surgery but I’m worried I’m being dramatic and should see what happens with my period and the next month of symptoms before I take her up on her offer! Or would you just get going as something not right?
Thanks, I know my problems are nothing compared to any of you but it appears you guys are more clued up on all things ovary, maybe more than my Gynaecologist so might have some wise words xx
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AliMojang
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Hi Ali that sounds a ridiculous waiting time for a laparoscopy and the cynic in me wonders if this gynaecologist is just after the private fees!
I would ring your GP and ask him what the waiting time is at your hospital and if indeed it is so long I’d ask him/her to refer you to another nhs facility with a shorter waiting time, you are well within your rights to do this!
And as this gynae has stated because your Ca125 isn’t raised it’s not OC I’d also doubt his knowledge base, not wanting to worry you but some forms of OC do not raise Ca125, I’m sure he’s based his opinion on other things too like your ultrasound etc and hopefully he’s right but I would want the laparoscopy doing much sooner than that as you need to know what’s causing your symptoms and resolve them as soon as you can!
Thanks Bev, I had the same thought! I know the NHS is in trouble but still!? I really wanted to make a smart comment about his availability nhs/private but don’t understand all the other stuff needed so knew I was being a bit unfair!
I had no idea you could go elsewhere so will ask my GP too. He’ll think I’m bonkers I’m sure!
I’m so confused on what’s for the best!
Thank you for your advice and will keep you posted on what happens xx
And yes I gave up a little at his CA125 comment and didn’t have it in me to say again to another qualified Dr that that’s not strictly correct as yes the fact that he can see the cyst on the screen may confirm. He says it’s a simple fluid filled cyst but unlikely to go away by itself at that size and risk of rupture/torsion so would take it out and look around while in there as something going on. Not sure if what is on the US could still be cancer? X
After a visit to A&E with kidney stones a CT scan showed a mass on my right ovary , pressing on my right ureter.
I am very thankful that I have private health care and immediately followed up with a gynaecological oncologist , after a TV ultrasound with a specialist radiologist they found a complex septated cyst, ,I had similar symptoms to you but no mid cycle bleeding they adopted a watch and wait policy, the cyst had probably been there 4-5 months before it was found incidentally and after a further 6 weeks a repeat TVUS scan a CA125 test which was normal, also MRI scan which confirmed the cyst had reduced to 1.5 cm Symptoms reduced no further leg and lower back pain and no right sided flank pain
Found adenomyosis, a fibroid and some endometriosis.
Really surprised at the CA125 comment!
did he tell you if it’s a complex or simple functional cyst? Have you had an MRI scan?
Honestly I think you are absolutely right To be concerned and ask more questions, my consultant saw surgery as an option only when the non invasive options were exhausted
I have an excellent paper on cysts a lovely lady on the site gave me and happy to share if you ping your email across
In Germany until later today so will send the paper this evening!
The cyst was fine they do a scoring system looking at CA125, age and menapausal status, size of cyst etc
My cyst reduced in size, quite rapidly, if it’s a simple fluid filled cyst or functional cyst they do usually resolve and this can be confirmed by follow up US scans.
CT was done with me for the kidney stones, MRI because they wanted to confirm the cyst had shrunk and to get as much detail as possible also they suspected adenomyosis / endometriosis
Here’s my confusion. I had assumed the symptoms were caused by the cyst so I’d had it 6 months plus and wasn’t going away. The gynaecologist said it’s too small to cause all the problems but he’d operate to see what’s going on but over 5cm it probably won’t go on it’s own if it does there must be something else to find.
What if I have a gastro problem and cyst just happens to be there at the time?
I’m worried as it’s been there so long but what if it hasn’t?
Could he be wrong about it causing all my problems?
Do I spend £5k of my mums money on a gynaecologist having a look!?
Don't trust them- ask for another NHS appointment- some cysts can be malignant and if hormone fueled do not register with the CA125 test. Really don't want to worry you but the mid cycle bleeds aren't really normal.
Thank you, I appreciate that. I’m still worried. I’m pretty sure if my Mum is happy to pay I’m going to book myself in for the end of October privately.
Who do you think I should see at NHS - another Gynaecologist? This guy does both x
How strange- I visited Poole a fortnight ago! Don't know anything about the Health service in that area, although my son in law's sister was a GP in Poole until about six weeks ago. I'm in East Sussex so ended up seeing a brilliant consultant in Brighton.
At an Ovacome AGM some years ago it was brought up that GPs need more training on signs of OC.
Usually I am very happy with the NHS and services here but the errors made, the apathy in the people I have dealt with recently and the delay in even getting an appointment is worrying!
I would hope if they find something to treat things would change as at the moment they’ve made me feel like a hypochondriac and neurotic pain in the backside and so not taking it all seriously!
So scary when realistically our lives our on their hands.
A friend has a family member who is a GP called me today and said he is being very cautious with 30-40 week wait and she’d guess at 20 weeks but he’s the gynae surgeon so not sure what to believe. He may be exaggerating to get me to go with him private!? When discussed the appointment she was shocked that he didn’t even feel my tummy! She says I definitely need the surgery but thinks I should wait as obviously nothing sinister!!
Thank you for the love and prayers and sending them back to you x
Hi Ali, I had a fluid cyst that was left in too long it became cancerous and it became so large that it attached to other organs as a result I now have low grade serous ovarian cancer. However I am in a minority and had it been recognised before the outcome would have been different. My guess is that they are monitoring your cyst to make sure it doesn’t grow because many do go away on their own. As the NHS is so over stressed they don’t see it as urgent. It’s a difficult decision to make for you. Gather all the info you can and ask for a ct scan. Good luck and lots of good wishes, Lesley
Sorry if i’ve missed it, but is this doctor a gynaeoncologist, or just an ob-gynae? I wouldn’t pay to have a basic gynae look around for cancer. He’s not qualified.
If it’s a simple cyst, most people have them at some point or another. It’s not particularly big at 53 mm. As you say, you don’t know if it’s causing your symptoms, and neither does he. You could spend £5000 and be none the wiser.
I’d stick with the NHS, at this stage. Have you told your GP about the bleeding? There’s no rush with simple cyst. Have you been investigated for gastro problems? It’s good to keep ovarian in mind, because the symptoms are similar, but it seems unlikely that a simple cyst would be causing so much pain in so many places.
Talk to your GP, stress the bleeding and see if you can get a referral. If you’re close to menopause, it might be hormonal. But I don’t like the sound of this doctor.
Speaking as someone who was told my 22cm ‘cyst’, complex, was probably cancer by an ob-gynae, referred to gynae-onc who looked at the same scans and immediately said, ‘ Benign’.
Honestly think it is worth your while to be referred to gynae oncologist just to be sure, you want someone with this experience to have a look inside not just a standard gynae. Good luck 🌹
My problem is that everyone is saying it’s definitely not cancer as fluid filled cyst and low ca125 so I can’t justify the referral? It’s something like a 1% chance I think but I’m so confused I don’t know who to trust. I don’t know enough to be able to argue with them and it’s been a struggle to get this far.
A few weeks ago they didn’t want to do anything and now they want to do surgery but it can wait for 9 months!?
Obs gynae guy just said maybe we’ll find Endometriosis when we go in?
You don’t think removing the cyst from the ovary and biopsy that would be a good enough start? X
The fact that the NHS isn’t rushing to remove the cyst isn’t because they’re overstretched. It’s because if they operated on everyone in your position they’d be putting thousands of women through unnecessary surgery with its associated risks. That’s another reason why I’m dubious about this doctor.
I think, if I were you, I’d ask about endo and what else could be causing your symptoms. The bleeding should be investigated. Your GP could arrange for a re-scan without referring you to a hospital on a watch and wait principle. There’s another blood test called ca-19 which is more reliable for some ovarian tumours and gastric issues. You could ask about that.
Do hope you get it sorted, but hope you’ve been reassured about the likelihood of it being cancer.
If it is going to give you peace of mind then let gynae have a look but with such a small chance it being something sinister, maybe worth paying for one more gynae opinion before you go ahead? So worrying for you but try to keep as positive as possible and hopefully it will be something easy fixed. X
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