Going mad frustration and concern : Hi all. I... - My Ovacome

My Ovacome

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Going mad frustration and concern

Paigexox1 profile image
Paigexox1
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Hi all. I really need some help and advice. I feel like i am going mad and embarrassed to see my doctor again he is so useless and careless he does even make eye contact with you. Firstly I started over a year ago having bad bloating difficulty breathing which resulted in only receiving %1 of oxygen in my body so ambulance was amazing. I carry on with this bloating, pains in my back if I walk for long periods I'm in agony when I sit down. I am always so so tired. The bloating is more frustrating as I don't want to go out I look pregnant people even ask me when you due. I have been to the doctor many times now and just feel so angry and frustrated. I first went about all problems was brushed of as a viral infection. I never go doctors so he should have known that and seen from his records. I then go back about my bloating and tiredness in which I saw a lady doctor. Sent me for a ultra sound was told to call my doctor the next day. Did so the qualified (non qualified) abrupt receptionist said the results won't be in as I have to give it 10 days I said the lady told me to call my doctors 10 days later no result called hospital who advised they sent my report within 2 hours if doing my scan. Tell the receptionist. Funnily they find it. My right ovary is large and has a abnormal appearance not to one that would appear when cyst ect. Sent for cea and ca bloods they was slightly high so refered me to gyno. Gyno appointment. Walked in asked few questions said it's bowel related didn't even do a internal and considering I had gone 2 months without a period. I listen and wait. Had a colonoscopy mri all fine. Another scan the lady and her words was. See your ovary still doesn't appear normal but your mri was fine so it must be. I asked her to report her findings not of what she can see from a report on mri as mri I am now aware don't pick up small tumors. The bowel department have discharged me I always new it was never bowel. I'm still suffering and now get the fobbed off we beleive you may have irritable bowel. Am I over worrying surely they would find somthing sinister or is it like they said ovarian cancer hardly hits people under 50 I am only 26 my auntie recently diagnosed with it and my mum had a cancerous mass in cervix. What do I do. I now for the last 4 5 months have this lump on the inside of my it's hard not painful at all. It looks like it has a slight hole in and it's near my gland so I assumed may be blocked but do I just listen and let them fob me off or.do.I go with my gut. I am just so worn out and tired I must look mad but the problems have not gone away. I have pain when having sex I bleed after sex and look 6 or 7 months maybe further months pregnant. I've tried no fibre no.no . different tried cutting out diary no different please guys am I going mad or should I go with my gut and just pay private for another scan and bloods. 😭

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Sallyklingforth profile image
Sallyklingforth

Sounds to me like you need a second opinion.

CallmeMum profile image
CallmeMum

Hi Lovely,

You have described very similar symptoms to my special person.

So here's my advice..... get straight back to the docs and refuse to leave until they book a CT scan if you're a good 'drama queen' (please don't take that rudely) put a show on I also find mentioning the General Medical Council is good leverage sometimes 😊

Good luck and keep us updated

Xxx

Paigexox1 profile image
Paigexox1 in reply to CallmeMum

Thank you so sorry for my late response I didn't eveneed realise sorry again xxx

Emalou71 profile image
Emalou71

Sounds awful what you have been through, I would go back to your surgery ask to see a different doctor and insist on a CT scan xx

Hairlessbeauty profile image
Hairlessbeauty

Hi,

You need second opinion. I was 37 years old diagnosed with oc stage III c in March 2015. Ca125 wasn't very high, but cancer spreaded into all my body. I had 10 hours, very aggressive debulking surgery, followed by 6 chemos. I was clear for 12 months and now I'm fighting again.

You have all oc symptoms, don't let doctors to ignore it.

I hope it's not oc, but you have to check it. Something is going on.

Wishing you all the best, fingers crossed.

Hugs,

Zaneta

Paigexox1 profile image
Paigexox1 in reply to Hairlessbeauty

Thank you hun I Deffo am trying to keep pushing.

Wish you all the best sorry to hear your fighting again πŸ’œπŸ’œ

27-359 profile image
27-359

You must INSIST on being listened to. Your life is too important. If you can, get a friend or relative to go with you for solidarity.

Let us know how you get on.

Jenny

Yoshbosh profile image
Yoshbosh

I would agree with the other ladies and recommend you go back and push for more tests. Whilst OC might 'typically' affect over 50s, it's certainly not limited to that age group! If it was, then I'd like to know how I got it at 38! Mention your family history and what was seen on the ultrasound. It's not fair to fob you off like that. Good luck x

Cropcrop profile image
Cropcrop

Hi,

You really need to push for a second opinion given your family history and all your symptoms, just the fact you bleed after sex should have alarm bells clanging at your GP's never mind everything else. We are always told to check that out. OC is very often misdiagnosed as IBS. Your age can't be the factor for ignoring OC, it is true that the majority of ladies diagnosed are over 50 but there have always been exceptions to every rule ever set. More than anything you need peace of mind and if you do have OC then the sooner it is dealt with the better on every level. If you can't get any satisfaction at your doctors there is the GMC and also the PALS service at your local health authority and the media always love a story like this.

Good luck, be strong and fingers crossed for a speedy resolution to all of this.

Take care, sending big encouraging hugs ❀xx Jane

Steghart profile image
Steghart

Absolutely agree with all other ladies, I went a whole year before I was diagnosed correctly, told it was peri menopause, IBS I KNEW something else was wrong and felt like a hypochondriac BUT if I could go back in time I would DEMAND to be referred for a hyteroscopy, I had CT, ultrasound, colonoscopy, which did not pick it up. Sometimes they need to actually look inside. Always go with your gut feeling, you know your body better than anyone! Don't give up, we will support you xx

LesleyGreengran profile image
LesleyGreengran

Are you in the UK? Just go to a different doctor's surgery and tell them your symptoms. Like someone else has said just keep on at them until they take you seriously. Take someone with you who knows about your symptoms and can ask questions if you run out of steam.

rppizio profile image
rppizio

While none of us want you to be overly concerned, we do respect your concern and you need to get answers that resonate with you as the truth. None of us are doctors but I would Strongly recommend a 2nd opinion with a gyn/onc and one that will do a full exam. Too Too many of us have gone to our regular doctors only to told it is our diet or bowel issues.. Then When we scream loud enough to have so testing done, boom many of us are in late stages of this dreadful disease.. we would all rather you be SAFE than Sorry. You will not rest easy if you don't pursue your intuition. The lump that I had been complaining about for over 2 years was dismissed as an gas bubble... at surgery it turned out to be the top of a 18 cm tumor one of several not to mention several that had burst and and also discounted to " bad gas".

Cinderella profile image
Cinderella

I am not sure where you live but I would certainly ask to be referred to a gynae-oncologist at a hospital that specialises in treating ovarian cancer. I think as it has already been suggested, take someone with you when you go to see your GP. Another thing you could do is look at Target Ovarian Cancer and Ovacome websites and see if you can print off any stories of women who have been told they do not have anything gynaecologically wrong with them and been sent to other departments. You could also print the leaflets from the Ovacome website or call them to get some leaflets highlighting the symptoms and take them to you GP. It took 7 months for me to be diagnosed with ovarian cancer even though I had a number of symptoms and my CA125 was above 35 when i first went to my GP. The gynae-oncology unit at my local hospital referred me to gastroeneterology within the same hospital because nothing showed up in my ovaries in the ultrasound and MRI scans. The gastroenterologist requested a CT scan because she could not feel anything in my abdomen due to bloating and when the CT scan showed a growth in my lymph nodes she requested a biopsy of the para-aortic lymph nodes and referred me to a haematologist. When I think about what happened to me, I feel the doctor at the local gynae-oncology unit should have referred me to the teaching hospital where I was treated and I may have been diagnosed sooner.

Good luck and I hope you can get this sorted out sooner rather than later. You should not have to pay for a CT scan and your GP should be able to make a referral to a gynae-oncologist who will request a CT scan. I don't know whether your GP will feel comfortable requesting a CT scan. Take care!

I would go back to your gp bring someone with you and explain your symptoms and say you are not happy. Ask for ca 125 and ct scan. Do also inform the gp of your family history. Unfortunately it is never to young to have Ovarian Cancer

Paigexox1 profile image
Paigexox1

I just want to say thank you so so much everyone and I am so sorry for my late replies. I'm still going mad and I did wait a bit purely because I had a colonoscopy and since received the biopsy results taken in the colonoscopy. Which can I add I never thought and don't beleive it's bowel problems so why they asked to do that I don't know. All was fine with the colonoscopy the colorectal consultant did not even have the politeness to see me in person never seen her yet she was my consultant. The letter confirmed they believe I have IBS. I now feel like shall I just accept it but I have explained I am not sensitive to food I do not pooh differently deepening what or when I eat. I never have. I am going to ask why the doctor has not done a CT as I was informed that's what was going to be done. Thank you for your support everyone. I know I sound so stupid worrying when some of you have had to deal with this terrible news but I feel they went to one extreme to another and to confirm they are checking if I had germ cell it scared me yet they now want to fob me off with IBS. I will be following this up for the month I am going to just keep a food diary be very strict and once again confirm my symtoms do not change. My exhaustion is so bad but I should hopefully get some answers. Thank you again everyone you've all been lovely. Wish you all the best and luck πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

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