Not diagnosed but what else could it be? So worried

[AliMojang]

Hi everyone

Been reading a few posts over the last few days and you all are incredibly brave, positive and supportive women I hope if it comes to it I can dig deep and be like you lot!

I’m 40 with a 5 and 8 year old in Dorset and have convinced myself I have OC so looking for some support in getting a diagnosis or any alternatives I can look into to get me through the next few weeks.

Several months ago I became aware of a constant tummy ache, dull and low level but similar to bladder spasms when you’ve held onto your wee too long and feeling full and bloated. I also have suffered with heartburn for as long as I can remember. Disclaimer!! I do like my food and wine and although I eat very heathily I eat too much of it and also too many biscuits! I’ve put on a stone this year!

So I have blamed myself and just put it down to over eating and weight gain, IBS.

In June I had 3 people ask if I was pregnant! This has never happened to me before so I started eating less and better, cut out most bread and sugar, booze etc Started drinking goats milk kefir (yuk!) foods like pineapple (meant to be good for bloating) Nothing changed. It’s not affected by diet, eating in generally and BM are fine.

In July I booked a private health check which would include FOC and when the Consultant asked for regular meds I said I took Rennie daily for heartburn and also x2 Ibuprofen every morning for neck/shoulder pain (20 years).

Examining my tummy she couldn’t feel anything but it hurts to touch under belly button and generally tender.

She said she’s worried I’ve damaged tummy with ibuprofen use but I should go to GP and ask for pelvic exam (I declined that day as was on my period!) and CA125.

Next results from private came back with blood in stool and urine and I researched symptoms of OC and since then have panicked!

Went to GP who dismissed all my concerns re OC saying I’m too young! Reluctantly agreed to do Ca125 which has come back as 10 so he says no further action. US referral was done but just found out when I chased it that the department said I don’t meet the criteria so rejected it on 13th Aug He didn’t listen to half my symptoms and has had no follow up. I’ve called for all my results and no one told me re US.

FBC, Iron and Coeliac all ok. ESR slightly raised at 23.

2 weeks ago I had a couple of hours of stabbing pain in lower left abdomen and the following day a few hours of stinging back pain coming in waves every couple of minutes (it’s how I imagine kidney pain to be) This happened again a few more times a few days later.

1 week ago I started bleeding heavily on day 14 of my cycle! This went on for 3 days. I managed to get an emergency appointment to see a Nurse Practioner who did urine test - lots of blood but cross contaminated, no infection, pelvic exam, said blood coming from uterus or ovaries but ovaries feel fine and cervix ok too. Did swab.

Said Not too worry and made me an appointment to see different GP to last time as I didn’t want the same one.

My Mum survived Breast Cancer at 52 and both her Aunts died of Breast Cancer.

If you’ve made it this far well done!!

So what I’m asking is have you heard of this stinging back pain before with OC, could it be on and off with no infection?

I know CA125 is low but everyone is telling me that’s reassuring and I read not necessarily!

Now I have the mid cycle bleeding I am hoping I can definitely get the US? Hoping to make a fuss and get it urgently as first Dr was so unhelpful and dismissive.

Any idea of what this could be if not OC? Could I have OC with such positive blood tests?

I’m so scared, it’s become all consuming and ruined the summer hols as can’t think of anything else.

Drs Tuesday and would like to go armed with as much info and guts as possible to make myself heard!

Sorry it is so long!

Ali x

[lynn6156]

Hi Ali,

I'm sure more knowledgeable people will be along but it seems to me there are several aspects and you should definitely be scanned. Hopefully you'll get on better with a different doctor.

The OC blood test can be normal and you can still have OC - so I would tell the doctor you're aware of this (lie if you have to and say another patient with OC told you. Technically true as there are people in here with normal bloods). In addition with a family history of BC they should be taking you more seriously. I don't understand your doctor, because even if the CA 125 is normal you could have a basic non cancerous cyst! which you would still want to know about as they can twist and cause horrible pain.

I've had similar left sided pain with both inflammatory bowel disease and also with a plain ovarian cyst. With the blood in the stool and the slightly raised ESR you may have something like a bit of colitis going on. They can do tests on your poo for this (calprotectin test) so that might be something to consider. Inflammatory bowel and irritable bowel can affect periods and cause all sorts of odd problems. Or that may be going off at a tangent.

Then you said there was blood in the urine - so there could be a bladder or kidney problem but I'd have thought they would have seen something in the FBC if that was the case.

I think an ultrasound is crucial for you so they can look at ovaries and bladder /kidneys and sort this out. Tell the doctor how disappointed you are that it was cancelled and the stress of all this is making you even worse! Exaggerate one of your pains or tell them it's keeping you awake at night - sometimes you have to do what you must to fight your corner!

So - the short version is it could be a number of things other than OC but it should be checked out properly and they can't be sure of anything without a scan.

Let us know how you get on wont you? and I hope I've not waffled on and confused you!

Lynn

x

[lesleysage]

Hi Ali,

It could be helpful to talk all this over with Anna, the Support manager on the Ovacome freephone helpline 0800 008 7054 ? Talking to her before seeing the doctor on Tuesday may be useful for getting the list of questions you want to ask.

Take care...keep asking questions.....

Warm wishes, Lesley

[Hidden]

HI There if you are feeling unwell, then change your gp,there is never am age limit on OC and your doctor is being too dismissive right now and rather unhelpful. Hopefully a proper diagnosis can be made and it could well be begnign but don't be fobbbed

[AliMojang]

Hi Lyn

Thank you for your response and no you didn’t waffle on at all....as you can see I am a champion waffler!

You sound like you are pretty knowledgeable so thank you. I wonder if some symptoms are unrelated and could be confusing things and was focused on a gastro problem until the bleed and the back pain.

Nothing really is an awful pain to tell them about but wondered about exaggerating a bit! I can certainly say how distressed I am especially as I should have had the original scan now had I been listened to first time.

Sorry I meant to say the Dr dismissed the blood in urine as none in retest and I was on my period so said it was probably from cross contamination. Also blood in stool he said could have been the same or can be affected by food I’ve eaten so won’t repeat that as the lab don’t do it unless you are over 60!

Thanks again for your time Lyn and yes will post again with what happens Tuesday xx

[BeeWild]

Hi Ali Ca125 is not always a good indicator for some ladies so you definitely need a scan! Some ladies never have their Ca125 go above the normal range even though they have ovarian cancer!

Unfortunately younger ladies are part of this community too so OC doesn’t stick to age limits, what a ridiculous attitude your Gp has!!

You need to insist on at the least an ultrasound scan, I got impatient waiting for mine on the NHS as it went beyond the recommended 2 weeks so I paid for one privately and it cost me £250 - the best money I spent!

Please ring Anna tomorrow and write your questions down before you see your GP

Your symptoms sound similar to mine before I was diagnosed but they could also be a multitude of other things, for your peace of mind you need to know xx

Good luck with your appointment and do let us know how you get on xx

Hugs

Bev xx

[AliMojang in reply to BeeWild]

Thank you all. I spoke to Anna on Friday but it was all pretty rushed and I emailed my local private hospital for a price for a transvaginal ultrasound too so hopefully I will be on my way to finding out what’s going on in a few days.

You have all reassured me that I am not being a drama queen or hypochondriac and will write everything down. I have chosen to see a very kind and patient Dr who I think will listen, be thorough and even let me push him down the route I want to go!

Nothing other than OC make sense with the research I’ve done so hopefully can convince him not to waste any more time. I still think I will be worried until I have a CT though

[Maus123]

Hi Ali. In addition to a vaginal ultrasound, it might be an idea to have an abdominal ultrasound scan too, in order to check for ascites i. e. fluid in your tummy (based on the 'pregnant' look). Just in case. All the best. Maus

[KBM22]

Hi Ali

First of all I’m so sorry you’re even having to think you might have OC and secondly I really bloody hope you have a load of other stuff going which is causing your symptoms but which will get sorted. However you and the other ladies are so right you need a scan to work out what’s going on.

I was 42 in January/Feb this year when the sh*t hit the fan for me and I got diagnosed so your dr is talking utter rubbish and needs a good talking to. Yes it’s less common at our age but it’s sadly becoming more common and needs ruling out.

Hopefully your CA125 is a good sign but as others have said it’s not a definite indicator so you need the scan.

It seems crazy they not doing scan anyway just to find out what’s going on. Can you see a female gp you may get more empathy there?!

Finally you’ll get through this whatever this is!! The worst worst part of this for me was waiting to be diagnosed may sound weird but knowing what was what and having a plan was much more bearable.

Lynn had lots of great advice on other things which could be causing this so get to the drs and fight your corner. Cry, persist, do whatever it takes. Whatever the problem is you deserve to get it sorted and it makes me really mad you are being fobbed off.

Oh and good luck getting the kids back to school (I Have a 4 & 6 year old!) at least the craziness of that will distract you 😘😘

Katherine x

[AliMojang in reply to KBM22]

Hi Katherine

Hope you’re doing ok and thanks for your message! Your life must be pretty full on! Is your 4 year old starting school this September? 😬

I have read so many stories of younger women - it’s a frightening trend especially with no real test for it and the vague symptoms!

I am determined to be strong, not waste time crying and be very persistent with my GP tomorrow. I feel bad for the patients after me! Xx

[Lily-Anne]

Having a normal CA level doesn’t rule out OC as it depends on the cell type commonly. Clear cell rarely sees abnormal or very high levels.

However your symptoms could be many things and being proactive with your health is good. My symptoms were only intermittent pain in my side which was severe but not regular. Bags under my eyes. Fatigue. So you can see it hardly screams OC

However the majority with a positive diagnosis do turn up inflammation markers outside of the normal range.

If your GP has been over ruled by radiology which seems to be quite a regular occurrence these days, it may be worth paying for an U/S to put your mind at rest

LA

[AliMojang in reply to Lily-Anne]

Thanks I’ve done lots of investigating into going the private route today and so can go armed with that info to GP tomorrow and get referral there if needed -£350 and they can see me tomorrow. I’ve waited 2 months since first suggestion so don’t feel I can wait any longer x

[Smcca10]

I am at the same stage as you hun , although my doctor had taken my family history more seriously and has put me up for a scan which I am waiting a date for. I’m currently waiting for my bloods to come back but from my twin sisters experience I will bot see the results from that as the end as her bloods came back normal and she ended up with oc still, which they found with pure luck. Persistence is key if you feel like there is something wrong you tell them and keep on at them constantly! It’s such a horrible time with the not knowing and sounds like you could do with seeing another doctor?

Good luck , don’t worry you’re not being a drama queen , if you look at my post a few days ago this was pretty similar to what you’re going through , it really is not a very nice place to be in x

[AliMojang in reply to Smcca10]

Any news on your bloods and do you know how long you’ll have to wait for a scan?

Did your twin sister have genetic testing? Hope she is doing well x

Yes the waiting is excruciating!

[Smcca10 in reply to AliMojang]

My sister didn’t have the genetic scan no , my bloods have come back normal , so waiting for my scan date now, it was supposed to be coming in the post 5 days after my appt so if I don’t hear anything tomorrow I will chase ... my sister is fine now, she did have to have a full hysterectomy but obviously that is a small price to pay for saving her life x

[Smcca10 in reply to Smcca10]

Have you had any further developments x x x x

[AliMojang in reply to Smcca10]

No nothing new, very aware of the pain and pressure in my tummy today, look 6 months pregnant tonight so hoping that stays like it for GP tomorrow at 8.30!

Have written every thing down for Dr. Poor guy, what a start to his day I’ll be!?

That’s great re your sister. What symptoms do you have that’s taken you to Dr? Does your sister not want to get tested for BRCA then? Xx

[Smcca10 in reply to AliMojang]

My symptoms are bloating x I feel like I’m 9 months pregnant and constantly need the loo, back pain along with pain in my pelvic area and upper leg particularly when on my period... my periods have gone from being regular to 48 -56 day cycle which made me start tracking it and for the past two months I’ve been nausea and also thrown up ( with no other tummy bug symptoms ) 2 weeks before my period when I would be ovulating according to my tracker app so all over the place at the moment x just want it sorted x

[Smcca10 in reply to Smcca10]

Good luck with your appointment tomorrow x x x

[AliMojang in reply to Smcca10]

Private scan booked TVUS for 3pm today and waiting for urgent NHS Pelvic and Abdomen but could be up to 2 weeks

[Smcca10 in reply to AliMojang]

How did your scan go ? X

[enzo14]

Dear Ali

Thank you so much for sharing, after reading the posts I am so incredibly frustrated that sometimes our GP,s need to understand we know our bodies what is normal and what’s not for us. TVUS is a relatively cost effective scan compared to the price of other scans and could really assist in either putting your mind at rest or getting you any help or treatment you might need to help you feel better mentally and physically.

Absolutely persevere ! Great advice from the wonderful ladies in the chat

Xx

[AliMojang in reply to enzo14]

I have spoken to my private hospital and looking at around £350 for transvaginal and pelvic ultrasound and my GP needs to refer me. They can do tomorrow if I get the paperwork across! So very tempted. Will see what GP says, thankfully appointment is at 8.30am x

[Cropcrop]

Hi Ali,

I think you need to go back to your doctor, but I also think you should really avoid researching on Google, many symptoms can be read in such a way that they could be caused by numerous issues and it’s really easy to self diagnose something that’s way off line, having said that, you are bloated, you’ve had a pelvic bleed you shouldn’t have had and you’re experiencing pain you shouldn’t be feeling. Your age isn’t really relevant , the CA125 marker, whilst useful, isn’t always a good diagnostic mark and for your doctor to dismiss any disease due to age is just wrong, there are ladies here who have OC who are young, it was once thought of as an older ladies disease, this was possibly part of the reason many ladies were missed and their diseases progressed unchecked. Go back to your doctor explain you’ve had an unexplained bleed and that you are in pain all the time and ask for a scan, if your GP won’t help you you are entitled to seek a second opinion. I truly hope you have a simple explanation for your symptoms. ❤️Xx Jane

[AliMojang in reply to Cropcrop]

Thank you Jane, I’m a nightmare with Google trying to get as much info as possible but it’s adding to my anxiety and I have wasted a lot time reading stuff! Thanks for listening and your encouragement xx

[lorraine71-Australia]

Hi Ali, I can not add any more to the advice our friend have given you, I think Lesley said phone Anna on support and yes go for a second option with a other Dr you need to be pro active sometimes and you need answers. take care Lorraine xx