Struggling to have anything looked into... :-(

[MemmaJ]

I’m sorry it’s a long story, I’ll try and condense it as much as possible.

I’ve been having symptoms for about 3 years now, including abdo/pelvic pain, headaches, fatigue, pain during intercourse, back pain, bloating...

Various tests have been done for lots of things over the last couple of years (nothing Gynae related), and no definitive cause was found. So my GP referred me to a rheumatologist a few months ago to try and get to the bottom of it (thinking it may be some sort of auto-immune problem)

Rheumatologist basically told me there’s nothing wrong but ordered a chest/pelvis/abdo CT Scan ‘to reassure me’, and was certain there would be nothing seen on it.

Then I get a letter saying that the CT shows pelvic congestion syndrome and a left ovarian cyst. Nobody could tell me anything more about either of them, because it’s not their speciality, so she sent a routine referral to Gynae and discharged me herself. She also requested an ultrasound to ‘check for resolution of the cyst’ 6-12 weeks later. She actually said that all the pain and fatigue etc that I’m getting is Fibromyalgia and not related to any of the scan findings anyway

While waiting for an appointment for the ultrasound to come through, my GP ordered a CA125 in view of the cyst - which came back at 35. She then spoke to Gynae and asked if they want to see me sooner than the ‘routine’ wait, and they said no because the result is ‘of no concern’ at my age (33).

I contacted the hospital and asked how long the ‘routine’ wait is to see Gynae, and was told around 6 months!

My anxiety couldn’t hold out that long, so I paid for a private ultrasound scan a few weeks ago. She found what she thought was a ‘complex cystic structure’ in the left adnexa, and she didn’t think it was attached to the ovary. Only measured 4-4.5cm, but she said she’d never seen it before so couldn’t say what (or exactly where) it was. Suggested an MRI might be helpful.

I reported this back to my GP, along with the fact that all of my symptoms are getting worse, and now include needing to pee more frequently too - who basically said I need to wait for the NHS ultrasound and they’ll go from that...

I had that a couple of days ago, and the findings were completely different..! He said it’s a simple cyst, measuring 0.9cm(?!) and IS lateral to the ovary, but ‘probably is’ attached to it by some sort of stalk or something?!

It’s really upset me because i had hoped I’d get to see Gynae sooner - but based on what he is reporting, that won’t happen. I’ll just have to wait 6 months.

I’m so anxious about the whole thing, I just want to know what’s going on. I wish I could ask for another CA125 at least (because it may settle my mind if it’s lower) - but I don’t feel like I can ask for one because they said it’s irrelevant at my age anyway. I would pay for a private blood test if I could, but I can’t afford it now.

I don’t know what I’m looking for really, just some advice I guess.

I know CA125 can be unreliable, especially pre-menopause - but I thought that with that result, along with my symptoms, I may not have to wait 6 months of pure worrying!

Just wondering if anyone has had similar experiences to me, what it turned out to be, etc.. or just any advice in general!

[Lindaura]

Oh dear,

I am so sorry that you have had to suffer so and that your quest for answers has been so confused and unsatisfactory.

I believe that you have every right to ask for a second opinion as well as another CA-125 test.

Scans are totally reliant on the perceptions and expertise of the technician reading the scan and that is why they are so confusing.

I do not think it would be out of line for you to ask for a CT scan, which is a more reliable way to look for most Ovarian disease.

Your age is really not a pass for the kinds of problems you are having.

So, I am sorry to say this, but you are going to have to keep fighting to be listened to and reassessed.

I think you need to get some real definitive answers sooner, rather than later.

Good luck with this,

And gentle hugs,

Laura

[Katmal-UK]

Hi, i am sorry to readyou are experiencing such symptoms at such a young age. I would suggest you ring the Ovacome helpline for advice. Also ask your GP for a second ooinion ASAP. i do hope you get answers xx Please let is know how you get on. xx Kathy xx

[CallmeMum]

Hi lovely,

I want to stress I'm not telling you what to do I'm not a professional, we're the same age and I looked after someone with OC until she passed away in July, but this is what I would do based on experience of my mother in law.

Has anyone in your family had breast/ovarian cancer?

First of all I would change GP if at all possible.

I would definitely seek a second opinion and ask for further tests/scans CT, MRI, PET etc as ultrasounds aren't always reliable.

Have a second CA125 done as it changes as and when over the course of the month.

Possibly find a local Macmillian centre and see if they can put you in touch with a Macmillian nurse to go through your symptoms and see what they suggest.

My mother has fybromyalgia and she's certainly not getting the symptoms you describe, as it's more of a muscular thing than it is than symptoms of anything more serious.

Xxx

[MemmaJ]

So after all of your wonderful advice (thank you!), I emailed my GP this morning and asked for another Ca-125. I explained how anxious I am and my worsening symptoms, and that it may help to appease me if I have another one and it’s lower.

She has just replied basically saying I can’t have one - because Gynae told her my previous result is of ‘no concern’ at my age, therefore there’s no indication to check it again.

[CallmeMum in reply to MemmaJ]

Change your GP my sweet, if I knew 4 and a half years ago what I know now I'd have done lots different with my mother in law, she was complaining for 5 years before diagnosis, your GP is just being bloody ignorant by the sounds of things and believe me it winds me up just reading this, having experienced what I have xxx

[Gemimablackvelvet in reply to MemmaJ]

Hi MemmaJ

My CA125 went up to 24 then 36 before I received a C T scan last month, which showed a recurrence of 2 more 3cm and 5cm tumours plus peppering over the peritoneum - after 9 months of stable disease. I'm now starting chemo again. I am much, much older than you but had I known about this simple blood test 5 months before I was diagnosed when I started with obvious symptoms (on hind site) I wouldn't be in the position I am now, Grade 3c OV. I would certainly have paid privately- It's not that expensive and a small price to pay for life or peace of mind. Don't intend to scare you, your GP could be right. Many GP's aren't.

All the best

Angela xx

[Caroles1]

Hi love,

It’s really not good enough, I would change my g.p. Or get a second opinion, have a word with Anna on this site, she is very approachable and caring, describe your symptoms and how long it has gone on for, she should have some advice.

Age is not a diviner of this disease and it pays to be on top of things, your body.

It may be a storm in a teacup, but, let’s get you a definitive diagnosis with a plan going forward,

Best wishes,

Carole xx

[bamboo89]

The only thing I'd add to everything all the others have said is this - a CA125 of 35 is not abnormal at all, anything 35 and under is not a cause for concern. Its probably only at 35 because you have some sort of cyst, because the CA125 is not just an indicator for OC, its an inflammatory marker and may rise for other reasons; a benign cyst of some sort in the ovarian region could easily cause an even higher CA125 than your reading of 35.

You are entitled to ask your GP to refer you to a different hospital for a second opinion, given you've had two conflicting US reports, and in hopes you will be seen quicker by the gynaecology department there. Your GP should have some idea of wait times for different hospitals - if she doesn't, get her to find out before referring. Remember, your GP doesn't have to like you, you just want her to help you do what you want.

I'd also add, if you've had lots of tests for different things, but finally been diagnosed with fibromyalgia, its possible your GP thinks you're one of the what they politely refer to as 'worried well'... attitudes to fibromyalgia on the part of medical professionals vary, with some thinking it's not a real condition at all, but its much better to have that diagnosis than just a list of undiagnosed ailments. Unfortunately, once a GP has decided you're just a 'neurotic worryguts, chewing my own elbow', which is how I used to very robustly refer to myself in front of the doctor every time she had the gall to mention my being one of the 'worried well' down the years, it can be difficult to get them to take your concerns seriously, so a change of GP might be the best thing, although in reality, the new GP will see your records and may come to the same conclusion anyway. It's very much luck of the draw with GPs I'm afraid... a large practice with more than one option for a GP to see is always best.

For peace of mind, I'd find the money to repeat the CA125, even if that meant saving up for it...it should be a fair bit cheaper than paying for a US. If it hasn't risen further, then you can feel a little calmer.

Miriam

[MemmaJ]

Thank you very much. My GP actually used to be brilliant and she was so thorough and helpful over the last few years, I felt very lucky to have her.

But since I got that diagnosis of ‘Fybromyalgia’ from the Rheumatologist (which I’m afraid I don’t believe), she seems to be palming me off a lot so I do agree with you, I think you’re right.

[MemmaJ]

The cheapest private ca-125 I’ve found is £49 through Bluecrest Screening, which isn’t a lot - but with all the ‘back to school’ expense recently, money is just too tight right now.

[Artgreen]

I’d go back and ask to see a different GP. I wish I had pushed harder for a ca125 when they thought it was IBS. I would possibly have got diagnosed at stage 1 instead of stage 3.

You have to be relentless sadly.

Good luck with them,

Alex x

[MemmaJ]

Just resurrecting this old thread rather than starting a new one, so that I don’t have to bore everyone with my story again..!

So I finally paid for a private CA125 blood test in December, which came back at 37 - so slightly higher than the first one.

Since my last post, I have also seen two different gynaecologists - both of whom just want to tell me I must have endometriosis (and that that’s probably the cause of my pain/symptoms and the raised CA125).

I was supposed to have a Laparscopy next week to look for this, but of course it’s been cancelled.

My symptoms are ongoing - still have all of the above, but some of them worsening (like the fatigue, bloating, frequency of needing to pee etc).

One of the gynaecologists did order a repeat CA125 in February - which came back at 48. So it’s just steadily and slowly rising.

I keep being told it’s probably just ‘cycle ‘related’ or ‘something like ‘endometriosis’... surely if it was cycle related it wouldn’t have been raised every time I’ve had it 🙄. And I don’t know much about endometriosis, but I don’t know if it would cause the CA125 level to keep going up, I would think it would be more ‘stable’?

Particularly since I don’t really have any other symptoms of endometriosis? (My periods are regular, not particularly painful (no more painful than the rest of the month anyway..!), I’ve never had fertility issues (3 successful pregnancies, no problems conceiving or carrying pregnancies).

I’ve also had another pelvic ultrasound and they reported what they thought was actually a hydrosalpinx... so now on 3 different ultrasounds, by 3 different people, the same ‘problem area’ has been reported as 3 different things..!

I’m just so worried.... I agreed to this Laparscopy for peace of mind, to finally settle what the heck is going on and hopefully move on - and now with it being cancelled, I am not going to get that.

And I don’t know when I will now because I’m just going ‘back on the routine waiting list’ , whenever everything re-opens!