Worried about ovaries

[nortonfolgate]

Grateful for any reassurance while I wait to be seen! I've had really painful ovulation for the last 5 months or so, accompanied by bloating, the need to wee more often, general feeling of pressure and heaviness. It subsides to just slight discomfort for the rest of my cycle but during ovulation my ovary and uterus are extremely painful.
I've had every test the GP can offer, CA125 was 45 a few weeks ago and now 65, white cells and everything else normal. I know 65 isn't super high and can be indicative of other things but the anxiety is bad!
I've had a pelvic & TV ultrasound, and a physical exam, which were all also normal. I've been referred to Gynae, have now added spotting to the list of symptoms so my GP has hurried this along but I've no idea how long I'll wait.

I had a chocolate cyst in the ovary in question over 10 years ago, but it's clear now.

Chocolate cysts are related to endometriosis and these can recur.

Endometriosis is not readily detected on either internal ultrasound or via blood tests. CA125 test is an inflammation market. Any symptom that is cyclical in nature and or gets worse up to and including menses should be checked out to see if endometriosis is present. In the meantime I would keep a daily pain and symptom diary noting pain on a scale from 1-10 if you do not already do this.

Thank you, that's really helpful advice. I'd say ovulation time is significantly worse than my period which made me question endometriosis but not discount it...

Hi OP, following as I get terrible ovulation pain since having my two DC. Some months the pain is so bad I can’t sit down.

Sorry to hear. Mine has been worse since having kids, too. Yes sitting is awful, I also have to hold my tummy while walking. Crap isn't it.
To update, my GP did an urgent referral to Gynae, but it's been downgraded to non urgent by the consultant, and the waiting list is 2 years!

What are your main priorities for treatment? As in what do want resolved the most - is the pain getting worse, are you repeatdly spotting etc. Or want tests or scans would you like? Are you worried it's cancerous? If things are getting worse, sometimes can make them push you ahead.

As a word of hope, the waiting list may be 2 years but will likely contain some who have been seen once and will need follow-ups, most of the time when you choose the hospital (through right to choose/refer), you can see the weeks for 1st appointment and then the weeks for treatment. If you haven't been offered this, I'd be asking your GP if you could.

Thank you, that's really helpful, I'll certainly go back to my GP to discuss.

In terms of what I want I suppose it's just an investigation, whatever form that takes, the symptoms are currently manageable but their sudden onset and the fact they're worsening makes me feel I should be doing something about it.

Are the symptoms just the pain and spotting. I agree the sudden onset is troubling. Perhaps getting some further scans from the GP now could push the referral up. Perhaps a repeat TV ultrasound or your GP can refer for an MRI or CT. They might put more clarity on the situation. The bladder issues, is it just an overactive bladder or anything else? Do you find the pain is severe or not?

On the right to choose, you should get a letter with the booking reference and password, then you log in and they'll list all the hospitals you can ask to be referred to. Some will be further, some smaller, they'll show how many weeks you'll be waiting on average for 1st appointment etc. You can look through and compare all this info, and them pick the one you want. Ask your GP about it. I for example choose a hospital further because of the quality of specialists and the facilities. I was willing to have to travel a bit for it.

Also what specifically did your GP refer you for as in what did they say on the paperwork etc. Are the main suspicions for endometriosis or is that seperate to your current issues, they think.

The symptoms are severe one sided pain and bloating with feeling of heaviness, increased need to wee and upset stomach during ovulation, spotting, and moderate one sided ovary pain before and during my period. I will definitely push for another US or whatever else they can offer me, thank you.
I don't have any info about the referral, they don't seem to know / want to say what they think it might be. There's been no mention of endometriosis even though it seems a likely cause - I will add this to the list of questions though. I've had to really battle for every conversation and bit of information from my GP so I do feel a bit in limbo now, but your answers have helped me to make a plan!

I have looked into right to choose, unfortunately it isn't available in my part of the UK.

Where do you live? As I know across England it's available to everyone? For all my referrals it's just been automatic, get the letter, get the code and log in, pick the hospital after seeing all the info.

What side is the pain? Do you have the NHS app? I'd be putting the endo and this issue into seperate ones as you manage the ovary referral. I'd ask the GP and also check the app (if you have it), what the question/issue they've said to secondary care. What do they want them to do for you essentially? In terms of the pain, do paracetamol or ibuprofen cover it or not? It's just I'm not sure why your GP referred you, as in what they want from gyne in terms of treatment or investigations which they cannot do. Perhaps with poor wording it may be impacting how gyne have graded it, as non-urgent, because they haven't got evidence of cyst, fibroids etc or whether they want a hysteroscopy etc. Putting aside possible endo that is, which I've assumed hasn't been the main focus of your discussions with GP.

I'm in Wales, it's not offered here at all unfortunately. I had a letter to say the referral has been received, and I would be offered an appointment at any hospital in my part of the country that has availability. When I rang I was told the waiting time is 2 years (although I assume if things deteriorate in that time they would look again).
My understanding from the GP was that they had come to the end of investigations they can offer - bloods, swabs etc, so Gynae was the next step, I didn't ask questions about the referral at the time as I was led to believe I'd be seen fairly soon, but I will now!
Yes the pain is currently manageable with otc painkillers, the main issue is not knowing what is causing it and whether I'm fine to crack on with painkillers for 2 years or if I actually need to push for anything else they can offer. I don't feel it's likely to be cancer, no, but I also don't feel it's been ruled out. The pain is right-sided, it is definitely my ovary. Thanks again for your reply.

I'd be asking your GP all these questions because I don't feel that they've thought this referral through. Looking at what you've been referred for it's obvious that gynaecology would place it as non urgent, I'm not sure exactly what your GP even wants from them and it's definitely not an urgent referral (e.g fibroids, and constant bleeding, suspected cancer etc) but I'm also not sure what they think it is, as in what intervention do they want from gyne? Which they cannot do, if it's certain scans they should tell you that.

Also what were your swabs for? What did they test you for? If they had concerns about cancer they should have done it on the 2 week pathway, ask them if they do have concerns about cancer and if they say no ask them what they have concerns about specifically? What investigations they want from gyne which they cannot do, they can refer your for a CT or MRI, so that shouldn't be the basis for referral.

When was your pelvic and transvaginal ultrasound? As in how recent?