Help !

[Lou029]

Hi I'm 34 years old and for the last 3 months been experiencing diarrhea ,erratic periods which this month have not even shown at all,continual lower back ache pelvis pain , pain down the front of thighs ,....I have been checking symptoms online and have ended up here .My Grandmother was recently diagnosed with ovarian cancer and now wonder if I'm being a bit ott about how I'm feeling ,the back ache is a killer though !!...,anyone can advise as my doctor isn't interested ,thanks Lou Xx

[Pimkin81]

Hi Lou

I would say go back to your GP and make them take notice! The symptoms you describe could be something totally benign but equally they may not and either way no one should be in pain all the time! There is a symptom tracker on the Ovacome website- might be worth taking a look at that and going to your GP with it . OC is rare in young women but I am only 31 and I have it- I went to my GP for 4 years wither very similar symptoms to you and my GP kept sending me for tests but none of them were quite right for OC and I am sure I had it all along.

I really hope it is something else- but please go back to your dr and get them to listen. If they don't then I would change GPs!

Sorry to hear about your grandmother - hope she is doing ok. Claire

[Lou029 in reply to Pimkin81]

Thank you so much for replying , My grandma is 90 and has just undergone surgery and chemo and is on the mend amazingly ...at 90 !!!...and I kinda know all what your saying but needed to hear it from someone else I guess , reassurance that I'm not mad maybe ?...also when I go back to my gp what sort of tests should I be hoping for ?....also hope you are on the road to recovery ?and thanks for your help xxxx

[Pimkin81 in reply to Lou029]

Wow - she sounds like a tough lady- having had chemo - I felt exhausted and I am a third her age!! This is just my experience but I am surprised they haven't sent you for a pelvic ultrasound? There is a blood test CA125 which is used as part of the diagnostic process for OC but it is not that reliable- especially in pre-menopausal women.

My OC wasn't diagnosed until I was admitted for suspected appendicitis -I had an internal ultrasound and I could just tell by the poor girls face that is wasn't good!

So if I were you I would go back to your GP and say you aren't happy just to be sent away. Your symptoms could point to any number of conditions but explain how concerned you are - and that daily pain is not an acceptable way to live- and that you would really like to get to the bottom of it!

You're definitely not mad- really hope you can get your Dr to take notice.

Cx

[Lou029 in reply to Pimkin81]

Goodness I'm so glad I've found you guys you have given me the confidence to take no crap and demand some action....and Gma is an amazing old bird and has sailed through it so there is hope for all , if your 90 and can do it Xxx

[Hidden]

Its quite simple, demand a CT scan, that is probably the best way of looking inside, why the NHS do not offer these as freely as an Xray is beyond me. Dont rely on the expertise of a GP, they make errors of judgement through lack of experience. You should have a right to a CT scan although these can come in various forms, ask for one that checks the pelvis area. Love Paul xx

[Lou029 in reply to Hidden]

Ok sounds like a plan , thanks Paul ....GP's are so frustrating at times !xx

[Lou029]

Also if you have time at some point could you tell me what symptoms made you seek help ?Xx

[Pimkin81]

Me again- I had lower right abdominal pain, lower back pain and this weird sort of pinching pain at the top of my leg. The thing that finally got me admitted to hospital was that i was in a lot of pain and it didnt go away over a couple of days. My pelvis felt sort of heavy and full- i had a 16cm mass so it wasn't all that surprising!! Other than that I had some intermittent digestive problems for some years before diagnosis- I kept being told IBS, or too much fatty food- had my gall bladder removed in 2008- this didn't help!

Hopefully you will have something totally benign and really easily treatable.

Cx

[wendydee]

Hi Lou, glad you decided to check it out. It will put your mind at rest. The best thing I can recommend is to go on the Ovacome website ovacome.org.uk On there you will find a BEAT symptom tracker which has all the most common symptoms, and a form you can fill in and take back to the GP. That will give you the ammo to ask for more investigation. There are also fact sheets, under the ' resources' tab so you can read a fuller explanation of symptoms. I didn't have a CT scan. I had an ultrasound and an internal ultrasound (called a Trans-vaginal) ...not scary at all. Good luck! Let us know how you get on. It's quite possibly something else. Your Gran sounds a great woman. Hugs to you both

Love Wendy xx

[vipervictoria]

Ask for a CA125 test, it's a blood test taken in a standard container sent off to a path lab with a requisition form signed/ordered by a GP. You get the results in 7 days or less. If you have any problems, refer the GP to current NICE guidelines. You can have the test done privately if you live in a big city. You get the results quicker, but it costs around £60. That should either clear the air or confirm that your worries are reasonable. Your family history is relevant. So is your age - in women of your age, elevated readings can result from several benign conditions such as endometriosis, fibroids, etc.. Alternatively you could visit a GUM/women's health clinic. In most places in the UK, you simply walk in and explain your symptoms. Best wishes, Vxxx

[Hidden]

Hi there .. Just to add to Vicky's advice .. I have advanced disease but have never had a recorded high CA125 reading. I'm sorry to hear about your grandmother. It can be an anxious time when a close relative or friend is found to have this illness. I'd agree about using the symptom tracker on this site and printing off the results to show your GP. Love Tina x x

[vipervictoria in reply to Hidden]

You are absolutely right. The CA125 isn't specific for OC, it's just a marker that is usually higher when there is cancer. Apparently readings can go up to 50,000 plus. And also, in woman like you, be completely normal when you obviously ain't. There is another test that is apparently better, but it's not in widespread use yet. Vxxx

[Hidden in reply to vipervictoria]

Wow Vicky .. I had no idea it could reach that high ! Love Tina x x

[Lou029]

Thanks everyone for all your help and taking the time to give advice it's amazing .I have another doc app tomorrow morning so I'll let you know how it goes Xx

[dawnieg]

Make a fuss and demand an ultrasound. I suffered from undiagnosed endometriosis for over 20 years and believed everything the doctors told me. Please don't put up with it like I did. xxxx

[Lou029]

Hi all, not a very productive day at the doctors I feel , I explained all my symptoms to her and she doesn't believe they are symptom characteristics of OC .....told her I felt bloated ,she said I wasn't , maybe just because I'm slim to her so it doesnt look it ?....lower abdominal pain but more on the right side , lower back pain and pain down the front of thighs ,frequent need for a wee , diarrhea , tiredness , periods stopping ......she's testing me for coeliac disease ?!!.....and also said when I told her about my grandmother having OC that "that is no connection to your symptoms "....then when I pressed her she said maybe it could be a cyst but she couldn't feel one but if it wAs the hospital wouldn't do anything anyway so no point going down that route !!...just keep taking painkillers and if testing for coeliac comes back clear then wait for your period to come back that should clear all symptoms up ".....so bit unhappy really as don't feel any better and nothing positive is being done , I told her that I've never had any bowel problems before and the diarrhea started as my periods started going haywire but she just shrugged !!.....wish I had more guts to question her diagnosis !

[Sunfleury-UK in reply to Lou029]

Hi Lou, it sounds very frustrating- Ovacome has a nurse led helpline, perhaps they may be able to either reassure or help you. Best wishes Sxxx

[Pimkin81]

Oh my goodness. I am going to be brutal- go to a different Dr. That is not treating you - constant pain with no real explanation is not acceptable. Is there another Dr within the practise that you can see? I had a similar thing before eventually getting my gallbladder removed. It took me literally sobbing and refusing the leave before they actually did anything and that was on the 5th visit to my GP.

I really hope you can get some answers from someone!

Claire

[HerThing]

Hi, I agree with Claire (Pimkin81). Even if the doctor is pretty sure the symptoms are not anything to do with OC it is no reason not to make sure. I, and I know many others, are so frustrated at the GPs lack of action when women present with symptoms that could indicate OC. My wife Angie, was initially suspected of having a hernia, then a cyst and it wasn't until seeing another doctor in the same practice that things began to happen quickly. It is all the more relevant to get you checked out if there is OC in the immediate family. The fact that your doctor has said it could be a cyst should surely raise a flag to get you checked out. I hope you get some answers quickly. Best wishes, Andy x

[Hidden]

I agree. The repeated visits and loops we go through are cited as the reason OC is caught so late -- it's these early investigations which are so vital. Did you do the symptom tracker as Wendy suggested? The reason I ask is that once thing are in writing I believe it makes it harder for them to refuse. You should make notes on the printout and date it In front of the doctor perhaps ... Every time. There is then also a complaint route you can talk of taking if you feel you aren't being given appropriate advice or access to tests nhs.uk/choiceintheNHS/Yourc... but the more important thing is to keep pushing for a ca125 test plus an ultrasound - they won't ct immediately and the above is the primary route for diagnosis or not. Good luck and I hope you get some movement. Do not delay.

Love

Sue xxx

[wendydee]

Hi Lou. I was going back and forth to the GP for a couple of years before she sent me for an ultrasound. I just KNEW something wasn't right! It's sound advice to ask to see another GP! also to ring the Ovacome helpline. Early diagnosis is so important. You sometimes have to make a fuss, even if it doesn't come easily. It may not be OC, but you need to settle your fears and find out one way or another. The BEAT symptom tracker is a piece of evidence that GPs should take notice of.

Good luck

Love Wendy xx

[Hilsuk]

Hi Lou, sorry you are not being listerned to , must be so frustrating. You need a transvaginal pelvic uss( not just an abdominal uss ) definately and possibly a ca125 ( definately if uss shows a cyst), and if both of these are normal, still worth requesting an appointment with a gynaecologist , as your gp is not coming up with a diagnosis and your symptoms are continuing.Helpful tip from ovarian cancer lecture day, worth measuring your waist measurement when you feel bloated and also when not so see if you actually are-cant argue with a tape measure ! definately worth seeing another gp in the surgery if feel you are getting nowhere and the symtpoms are new, and taking the beat symptom tracker with you as suggested. Assume youve had usual tests done like swabs , and are up to date with your smear ?

Good luck

Hilary xx