Can any advise me what they would do in my posi... - My Ovacome

My Ovacome

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Can any advise me what they would do in my position?

blonde profile image
20 Replies

can anyone advise me? i have pain in lower right side of abdomen for 5 months, been to hospital and had ultrasound but they said because they couldnt see my ovaries they took it that they must be ok. i am very bloated. my bowels are all over the place, im having to go to pee a lot more but more concerning than that i have started bleeding after going to the menopause 5 years ago. i have been referred back to the hospital but have been told that it wont be urgent because they have already ruled out cancer. should i go private to hasten things up? my doctor isnt very keen but to be honest im feeling unwell and very worried. i have now been taken of HRT this week as well.

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blonde
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20 Replies
SaraL profile image
SaraL

Blonde, I would demand a second opinion right away. You are entitled to this on the NHS. My ovaries couldn't be seen on the ultrasound, either, and I had ovarian cancer. Most of your symptoms do sound rather familiar. With any luck, something else will be the root of the problem, but you really do need peace of mind. Don't wait. Book another appointment with another GP, if you are able, on Monday morning! It makes such a difference which GP you have.

Did the surgery run a CA125 blood test? This picks up some ovarian cancers and not others. Are you booked in for a laparoscopy for a look at your insides? I would want to know why not as, I believe, this is the only way of confirming whether it is cancer or not (it was in my case, anyhow) - particularly as your ovaries can't be seen.

Does your GP have another answer as to what they think is going on in your body? From what you have said, they sound rather ineffective.

Go and bang your drum loudly - take someone with you for support, if necessary. Sometimes it takes perseverance to get through to some GPs. Go find a good one. Good luck and let us know how you get on!

blonde profile image
blonde in reply to SaraL

thankyou so much for responding to my question, i feel quite overwhelmed with the response. i have been back to gp today and have now got an appointment for 8th December at a local private hospital but ironically on the nhs, apparently the nhs sub contract to help keep waiting lists down.. so heres hoping. im going to print off all the replies and take them with me. i will keep you posted.

spanishanna profile image
spanishanna

Hi Blonde,

So sorry to hear of your problems, but knowing what I know now about ovarian cancer I am afraid I wouldn't waste time and I personally would get a private appointment. I am not suggesting for one moment it would be ovarian cancer, but I thought recent thinkings in the UK are, that if anyone presents themselves at the Dr with bloating, bowel problems etc., they should be given a CA 125 blood test. You don't mention this, so presumably you haven't had one yet ?

Was there any mention of the reasoning for taking you off HRT ??

Good luck and keep us posted.

Anna xx

blonde profile image
blonde in reply to spanishanna

i now have appointment for 8th December at hospital, the reason for taking me off HRT is to rule out hormone imbalance. i will keep you posted. thanks for responding i felt very empowered to go and insist for action.

MargaretJ profile image
MargaretJ

Mine was palpable from the start but they thought bowel cancer until I had thevsigmoidoscopy so I went straight to CT scan which "sees" more. I was lucky to be fast tracked and when it seemed to slow down my GP made a fuss on my behalf. Your symptoms are so like mine that I would make a big fuss, at least to get the CT scan and CA125 test. My son wanted me to go private at one point but my Dr said he would not go down that route even if it were free because you do not get integrated care. I have seen the oncology team, one of the best gynae surgeons in the country and they have consulted radio therapy and i will also have a bowel specialist present when my new Tumour is removed next week in the event that a colostomy is unavoidable.

Make a fuss! Ask for an early appointment and here's hoping that your next news is that it is good.

blonde profile image
blonde in reply to MargaretJ

thankyou so much for responding, i have an appointment booked for 8th December and plan to take all these responses with me. hoping that all goes well for your surgery next week, will keep you posted.

harley profile image
harley

Hi Blonde

Yes, make a fuss, you need to know what it is and your symptoms are very like mine which was diagnosed as OC stage 3 but eventually turned out to be PPC with ovaries fine, they dont get it right all the time. During the 5 months it took for a diagnosis, there were times I felt as though I was wasting their time and should give up, I am so glad I didnt.

Harley

blonde profile image
blonde in reply to harley

thankyou for your reply. i have appointment booked for 8th December. i will keep you posted.

Meryl profile image
Meryl

Hi Blonde

I'm sorry to say that your symptoms sound horribly familiar to me, including the lack of ovaries. As others have said demand, as strongly as you need to, a second opinion. I don't know where you live but there are some fantastic specialist centres around the country for OC (mine included) and as far as I know on the NHS you are entitled to go to any hospital for consultation/treatment. You have to be strong and persistant - don't give up. Meryl XXXXX

blonde profile image
blonde in reply to Meryl

thankyou for responding, i have appointment booked today for 8th December and definately wont be leaving it without answers.

bosue profile image
bosue

Hi Blonde, I agree with all the above, I would get to your gp tomorrow , then insist on being fast tacked for a ct scan at least get ca125 blood test,let us know how you get on. Love Sue x

blonde profile image
blonde in reply to bosue

been to gp today, she says that because the appointmnet is so close its best to leave everything to specialists but will definately be asking for the blood test. i will keep you posted

pixie profile image
pixie

Hi Blonde, all I can do is agree with what the other ladies have said. Demand a 2nd opinion. Demand a blood test. Make a fuss. Best of luck, Love Gael x

TinaWright profile image
TinaWright

Hi blonde, you poor poor lady, I am appalled at the hospital saying that they have ruled out cancer when they cannot see the ovaries, I`d want to know why? Surely if they cannot SEE the ovaries they cannot SEE if there is any cancer or not????????

Kick, scream and shout loud until they take you more seriously. The day I had my ultra sound I was asked to stay at the hospital to see if the consultant could arrange a CT scan there and then. He did that and in less than a week I was reffered to Addenbrookes hospital, cambridge for diagnosis. Mr Crawford himself did my operation 2 days later, he is one of the best or the best in the UK, he`s been in the newspaper twice recently for performing life saving operations on cervical cancers that no other doctor in the UK has performed before, one of them on a friend of mine.

Because I live in Lincoldnshire and because our loacl hospital has such a bad reputation I asked my GP to refer me to Peterborough City hospital, this hospital works close at hand with Addenbrookes where most of the ovarian cancer research takes place. I was referred to Dr/Mr Randal`s clinic and was seen by a team member Mr Shrimeaven, if this helps. I thank the expertise of these people who saved my life last year. I was amazed of the speed of things.

As well as having a CT scan arranged for me the same day as my first consultation, a CA125 blood test was also carried out. Rather than delay things I would ask your GP to carry this blood test out for you, I now have these tests done regularly with my GP every 12 weeks, its not a problem they owe this much to you. Then go from there. let us all know how you get on.

By the way, the only symptoms I had was the bleeding and my tumour was as large as a melon and the cancer had already spread to my bowel.

Of course because our symptoms mimic so many other things it could just be down to IBS (irritable bowel) but you wouldn`t have the bleeding with that so don`t be fobbed off, this must be looked into as speedily as possible.

Love with lots of luck from Tina xx

blonde profile image
blonde in reply to TinaWright

thankyou so much for responding as ive gathered you can read all my replies made to others but i really thankyou for responding as ive already said i feel overwhelmed at the kindness of you ladies but feel strangely empowered and stronger to ask for more, as before i felt i was being a pest to the gp and that the pain would somehow go away. i will keep you posted.

SaraL profile image
SaraL

Blonde, in fact, I would ask for a CT scan right away rather than an ultrasound. The CT scan can detect more than the ultrasound. This has been allowed to go on for far too long. You must find a way to be seen asap. Sorry, I can't stop thinking about how appallingly you have been treated. Please do let us know the outcome. Call MacMillan or Ovacome helplines for help, if you need more information or support. SaraL xx

Blonde,

I agree with the other people, straight back to the GP for a CA125 and a ct scan to find out what is going on. If necessary print out the symptons on the BEAT tracker from this site and beat him over the head with it!!!!!! You need action now not when they can decide to look at you again.

Good luck, and keep us posted.

Viv

spanishanna profile image
spanishanna

Blonde, agree with the ladies above, action has to be taken immediately not left for another week and a half. You have to be firm with these people, they think they are gods and hold all the power, but it is our lives they are dealing with - would they be so lax with their own wives/daughters ?????

I had a female private DR of all people, who when I presented myself with my symptoms, put it down to IBS. Had she acted 3 months prior to when she did, I might not have reached the stage of cancer that I am now at !!

Anna xx

MargaretJ profile image
MargaretJ

Blonde this is a fantastic website! Do use us!

bosue profile image
bosue in reply to MargaretJ

MargaretJ. I agree about this website, I really dont know what I would have done without it. Love Sue x

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