ovarian cancer

Sorry wasn't sure what topic to start a discussion under!
I am really worried and have been in alot of pain for a few months now and desperately need help and advice.
The doctors are sending me round in circles and really not listening to what I'm telling them.
It all started about 18 months ago when my periods starting changing from being completely 'normal' to being up to 3 times a month, but ussually every 2 weeks. I thought nothing of it to start with just put it down to tiredness.
Then a few months ago I started to have lower abdominal pain (can pinpoint the exact location of the pain) which has got worse and is now severe and stops me in my tracks, it's painful and more or less constant.
I have also suffered greatly over the past few months with really bad lower back pain and pain in the groin area and also down the leg like a nerve is being trapped.
I am having alot of problems with constipation (lovely I know) and all this started a few months ago and has just got worse and worse.
The hardest part of it all is the extreme tiredness I feel all day long ussually for no reason whatsoever.
I have bloating, frequent need to go wee and urgently and also feverishness and then chills.
Also I don't know is this comes into it at all but i was diagnosed with rosaecia (not sure the correct spelling!) about 6 months ago, took some medication for it and it went away surprisingly and has not come back so I wonder if it was actually that in the first place!
I have had a recent smear, fine, a pelvic exam, fine and a Ct scan ( just 2 ovarian cysts on right hand side which I was told is nothing out of the ordinary. I've also had a CA125 and was told that was normal (but didn't see the results). I've had blood tests done and just show that the white blood cell levels are raised.
The consultant at the hospital thought it maybe colon problems but I think it's more likely to be ovarian cancer because it all began with periods all over the place.
I am really hoping that someone out there can sympathize with these symptoms and give me a little advice. Also would Ovarian cancer have shown up on the tests already done, or do you think it could have been undetected and would show up in a transvaginal ultrasound which hasn't been done?
Thanks to you all in advance for any help you can give me.

By GEPI
Posted November 6, 2009 at 12:11 pm
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Hello,

Have you considered asking for a labaroscopy. It is minimum invasion and would allow them to explore the possibility of ovarian cancer. Just a thought. Also why not have un ultrasound? It does not confirm as such but it is not invasive.

All the best

GEPI

By waywen
Posted November 6, 2009 at 1:20 pm
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Thanks for replying, I've had a pelvic ultrasound and nothing showed up on that. I hadn't thought of a labaroscopy but I have an appointment at the hospital next week so will mention it to the consultant. Do you know which would be the most effective, the trans-vaginal ultrasound or labaroscopy?
The doctor who I saw first practically dismissed the idea of OC and said 'I'm not in the right age group to have it' He as much as said told you so when he did a CA 125 test and said it was normal as he suspected!
Currently they don't seem to know if it is a bowel problem or gynaecological problem but it's strange it all started with periods being totally messed up, cramping feelings and bloating all the time! Any bowel problems didn't start till after every thing else.

By LynleeA
Posted November 6, 2009 at 2:54 pm
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My periods were completely normal and I had no pain whatsoever. The bloating (ascites) was my ONLY symptom.
There is obviously something wrong with you and you need to be persistent in getting a correct diagnosis.
Of note: Age has NOTHING TO DO with Ovarian cancer. I had none of the risk factors and was 46 when diagnosed at Stage IIIC. There was a girl in my hometown...diagnosed at 11!!!
Get another opinion fast!
Good luck to you

By verlinda
Posted November 7, 2009 at 9:16 am
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You might also tell the doctor that the CA125 is not valid for all women; some have a totally normal reading with StageIV ovarian cancer.

I don't know whether the transvaginal ultrasound would show anything the CT-scan didn't. Have they checked to see whether there has been any change in the cysts? It is normal for women to have them, and they can be very painful, but given your other symptoms, I'd push them to keep monitoring them.

Quite frankly, if you are able to this with your healthcare, push as hard as possible to be seen by a gynecological oncologist. Bring all your test results and write down all you've done over the past 18 months. In the stress of an appointment, I often forget crucial information if it isn't written down. A laparoscopy is relatively minor surgery, but the surgeon can see directly into your abdomen and perform some surgical procedures with it.

Keep us posted.

By waywen
Posted November 7, 2009 at 12:25 pm
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Thanks LynleeA and Verlinda, I emphasized to the first doctor I saw that I had looked on online Ovarian Cancer sites such as this one and that there are alot of people out there younger than me that have OC and he just wouldn't have it! My own GP is much more understanding but she herself admits she doesn't know what's causing the pain and says it's best for the consultant at the hospital to deal with it. So I'm not seeing anyone in particular at the moment because I get sent from one department to another because they think they know best, and so I'm getting no where fast but in so much pain and getting weaker and tireder by the day.
Also, I don't know if anyone has experienced this, but I am now getting what I would say is shivering sensations inside the body, I don't know if that makes sense to anyone or if anyone has had this at all. It's just a really strange sensation to be shivering inside and not on the outside.
I have an hospital appointment on Thursday so we'll see where they send me next. I'm going to really makesure that they take OC seriously though because I need to be 100% sure that it isn't that, that they rule it out before they send me somewhere else.
No, they haven't checked if there is any change in the cysts, all they said was they are on the right hand side and wouldn't cause the pain on the left. Unfortunately the pain is nearly as much on the right now as on the left side. When I had the ultrasound a few months ago i wasn't in any pain then, they just did it to try and find out why I kept having periods so frequently.
Thanks ever so much for replying to my thread, it's such a worrying time and I am so afraid now because it just seems to be getting worse by the day and I really appreciate your helpful comments. I'm just afraid that because it's taken so long and they are just not listening to me that they will leave it to late.

By waywen
Posted November 15, 2009 at 12:46 pm
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Went to see the consultant on Thursday and he has ordered loads of tests to be done to try and find out what's going on, a colonoscopy, transvaginal ultrasound and another pelvic ultrasound (as they found cysts since the last one so they want to monitor them) and a few other tests as well, also had blood tests because they just wanted to rule out underactive thyroid gland as well. Can't quite see what that's got to do with it, but process of elimination I guess!
In alot of pain at the moment especially the lower abdominal pain in the left hand side and the pain in groin and leg, does anyone else suffer with this?

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