hi. I’m Jennie. Hope it’s ok to post here as I’ve not been diagnosed yet. I’ve been to my GP about 12 times over the last 5 months. Also been to aA&E several times with tummy bloating and pain. The doctor eventually done a CA125 which came back at 18. I’ve had ultrasounds and a private mri which are all clear. Not sure what else I can do now. But it still have pain and bloating plus my bowels are all over the place. I’ve also had a colonoscopy which was clear. The GP has referred me to gynaecologist on the 2 week referral but she feels it will be rejected as my investigations are coming back normal. But I know something isn’t right and I’m not sure what else u can do. Thank you for any suggestions xx
not sure what’s going on : hi. I’m Jennie. Hope... - My Ovacome
not sure what’s going on
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MillieEllie
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46 Replies
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hey Millie
I to had similar issues plus more .. they did a ca125 which came back at 57 
I have my ultrasound scan tomorrow and I am terrified that it is something bad!
If they have referred you to a gynae it could possibly be to rule out endo or something similar
MillieEllie• in reply to
I doubt it’s endo. I’m 62 and have never had problems before. It’s so strange. I’m so exhausted all the time as well. Maybe that’s the stress also. I just know something isn’t right. Just not sure how to proceed if my referall gets rejected.
• in reply toMillieEllie
I would say don’t stress as that will only make your symptoms worse, easier said than done I know. But take comfort in that everything has come back normal and hope you get some answers 🙏
MillieEllie• in reply to
It’s hard not to when you know something isn’t right in your body. Good luck for your ultrasound. I hope it goes ok. Do let me know x
• in reply toMillieEllie
I hope they do not reject it Millie, if they do keep pushing for it ! Good luck & thank you 🙏
MillieEllie• in reply to
It’s hard when you know something is not right to get answers. But I’ll keep pushing. CA125 can be raised for many reasons. Do you have other symptoms. ?
• in reply toMillieEllie
I’m 33 with 3 very young children. I have loss of appetite, fatigue, bloating, feeling full after eating small amounts, lower back pain, urgency to urinate, and the list goes on…..
MillieEllie• in reply to
Same as me. I have all those symptoms. I’m a lot older than you. But you’re clearly a lot younger. You probably just have cysts as my daughter had the same with raised CA125 and she had a huge cyst. She’s been fine since It was removed when she was 32. So I wouldn’t worry too much. She had all those symptoms. X
• in reply toMillieEllie
Thank you Millie your reassurance is appreciated all I have done is cry and think my children are still very young and dependant if something was to happen to me 🥺
I think that’s why I am so worried that the ca125 was 57. Because I originally went to the Gp with these symptoms and they suggested the blood test with an ultrasound.
and yes same, I feel there is something not right with my body also. It might not be something sinister but something else and I feel nhs just kind of deal with symptoms more rather than finding the root cause.
MillieEllie• in reply to
Totally agree. I’ve been told uti. Gave me 4 courses of antibiotics for a uti I didn’t have. Then told ibs. Never had it before. I’ve pushed and pushed. Still not answers. Eventually paid for a private ultrasound and mri. Still no answers as to what’s causing it. But something clearly is. X
Please don’t worry. My daughter had so many problems with raised CA125 it was a bad time. She was in a lot of pain. All your Symptoms. She had another about 2 years later. All the same symptoms. But it eventually just disappeared after a 3rd scan. You will be fine. Xx
Have you had nutritional advice and seen a gastroenterologist?
Having repeated CA125 can spot an elevating trend or that the CA125 is normally slightly outwith the normal range for you. The normal range is usually set at where 95% of the population tested would lie so there will always be some who’s normal is slightly above the top end of the range.
Good luck at getting to a diagnosis and treatment plan for whatever the cause.
F x
I’m hoping you find relief from your symptoms but please do not stress as your results are clear and very reassuring. I guess all you can do is wait and see if they accept you to seeing a gynaecologist and if not the worst case would be going private again x
MillieEllie• in reply to
I will keep looking for an answer as it’s affecting my mental health as well as my physical health. Do let me know how it goes tomorrow. Must be hard with young children to look after x
• in reply toMillieEllie
Yes it definitely affects your mental health I have horrible health anxiety. Hoping you get answers and will update hopefully will good news 🤞
MillieEllie• in reply to
It will be good news. It could be nothing but your doing the right thing in getting it sorted. Let me know as I’ll be thinking about you. Don’t need any more stress in my life right now!
hi, sorry to hear about this. Firstly your ca125 is in normal range which is a good start. However if you know something is ‘off’ pls keep pushing. Why? My mum had 3 clear ultrasounds and a clear Ct scan as at November 2018. She did have a raised ca125 though of 133, so they did a lap to check in Jan 2019 and there was stage 3 ovarian cancer.
Get your bloods checked again, see if it moves, but keep pushing. In some cases the bloods are raised.
Remember though, ‘normal bloods’ and a normal mri are positive.
I will. Thankyou for your reply. X
Is your mum ok. Just occurred to me I didn’t ask. Hope she’s ok. I’ve just booked a private CA125 after your advice. X
I think you’re doing the right thing if I’m
Honest.
My wonderful mum battled this cancer for almost 5 years but it won in the end and she passed away in August 2023.
It has broken my heart and I battle the grief daily.
Im hope all goes well for you. Keep us updated.
I had an ultrasound, which didn’t show anything. My CT scan showed cancer and CA125 was 158. I was experiencing all of the symptoms of ovarian cancer, but my doctors didn’t look into that right away. I was diagnosed when I was stage 3c. The scan and CA 125 were accurate ,but unfortunately these were tested when the cancer grew. I would push for a CT scan and more blood work.
• in reply toPianoplayer731021
surely the mri scan Millie had would have picked it up?
Pianoplayer731021• in reply to
Hi Nazzy14, your’e right about the MRI picking that up. I would think that would be more accurate than the CT scan. I must have overlooked that when I was reading her post. Thanks Nazzy for your reply to me. Sometimes I read things too fast! 😊👍
also I’m sorry to hear about your diagnosis , hoping treatment is going well for you and wishing you a speedy recovery 🙏
Hi Millie .. just on my way home , just had my scan and everything was normal.. no cysts or anything. 🙏 I really wanted to say thank you your reassurance really helped me get through it x
MillieEllie• in reply to
That’s great news. Now you can get on with your life. I’m really pleased for you xx
hazelnut50• in reply to
What a relief to read this! Hope that helps you relax right now. Bravo for staying vigilant and please continue to do so without worrying too much. We must always be OUR OWN advocate. Keep a journal of your symptoms, tests, results, and file it so you can refer to it if questions come up and you need to connect the dots, accurately. Take good care of yourself, young mamma! 🌷🌷🌷
Hi Jennie.
I just read your post and it reminds me so much of me last year.
I'm 41 and last summer, I had a really awful, abnormal period. My GP referred me for an Ultrasound straight away which showed a massive, simple cyst on my left ovary. My Ca125 was 13.
An MRI showed up Endo and I had other blood tests done to rule out other types of cancer. They came back normal.
A year on, and I am still none the wiser on what treatment I'll receive. I'm a nervous wreck all the time. They want me to have a hysteroscopy which I'm dreading and another MRI, but they don't seem to be in a rush.
I know my story is different to yours, but I can tell you are very worried and I just wanted to say that there are others out there who can relate to your fears. You don't need to feel alone.
MillieEllie• in reply to
thank you. It’s the not knowing when you know something is wrong. I’m just so tired of fighting to get an answer. My mental health isn’t good and hasn’t been since it started. But I know I’m not the only one fighting for answers. I’ve had 3 ultrasounds plus an mri. But nothing is showing up so I feel I may be overlooked and not sure what I can do about it. As I have no cyst and bloods ok they just tend to look at me and offer me antidepressants. It’s exhausting xx
SuffolkJen• in reply to
Hi just wanted to say please don’t fear the hysteroscopy.
I had one about 10 years ago and it was horrific so when they told me they needed to do another one a couple of years ago I felt sick. Then they told me I could have gas & air during it. Honestly it was an absolute game changer, I felt nothing and was fine afterwards. They did offer full sedation as well but the gas and air was more than sufficient. xx Jen
• in reply toSuffolkJen
Thank you so much for your reassuring words. They actually mean a lot to me because I've got nobody to speak to - my family seem to think I'm overreacting, but I can't help worrying.It's good to know that they offer gas and air. I don't want to go down the general anaesthetic route as I'm overweight and suffer with type 1 diabetes too.
Your reply was gratefully received.
SuffolkJen• in reply to
You’re welcome - I would just say ask before you are due to have the procedure as they told me it’s something they’ve been offering for a couple of years but there may be different rules with different health authorities,
Like I said if they offer it there’s nothing to worry about easier than a smear test.
Good luck xx Jen
Keep on asking questions until you are reassured. Listen to your body.
I’ve just seen a gynaecologist on the 2 week referall. He says it’s absolutely not ovarian cancer. He’s taken biopsies of my womb which was very painful. He says he doesn’t expect anything to show up as all looks fine when he examined me. So back to square one. He’s suggested It’s a bowel problem although I’ve had a colonoscopy which was fine. So stuck really. Back to doctors I guess to get a referral to gastrointestinal dept , I asked about a ct scan but he said he saw no reason to send me for one as I’ve already had lots of tests. Which I have. So bit disappointed as have got nowhere but glad he isn’t concerned about anything sinister. I’ll keep you updated. Thank you for your help because it’s because of comments on here that pushed me to get tests done.
That’s still more good news and reassurance. You’re doing everything I would do! Bravo! How is your diet, btw? Do you have special needs in that dept? Things you avoid or can’t tolerate? Have you tried cleaning it out by cutting back on some things like sugar, high and simple carbs, using intermittent fasting to give your body a break by not eating for 12-16 hours, this can be easily done by eating dinner early and breakfast late. Do you walk regularly or exercize, do you have ways to release stress? All these things will help you in deeply profound ways, with or without the presence of cancer. Thoughts? Sending you healing thoughts, Jennie!❤️ Keep on keepin’on!
I’ve not had problems before. But it has been suggested to do the fasting to clear myself. I will give it a go , I’ll try anything. Thanks for your help and advice. I suppose I have to take another view of my symptoms as doctors and gynaecologist saying it’s not a gynaecologist problem so I’ve got to accept that as they won’t investigate any further. Many Thanks.
Hi Jennie, in your investigation stages, as others have said, keep a reliable journal even a spreadsheet of symptoms, dates (esp when they come on worst), tests, results. These will help you enormously later this year or years from now. Esp as dr’s dont have time to connect all the dots. So you must. Looking at your mental and physical state including diet is also key, any healing you do in those departments will only make you feel better and stronger. You can’t lose by living a cleaner life, it brings inflammation down and may cause less triggers . And if there is anything bad “cooking,” you’ll be stronger to deal with it, your body will be stronger. And that’s what we want, not just to find out what the wold of medicine can do to help us but what can we do to build our immune system that has to fight the “bad guys,” so to speak. We take for granted how imp this is in any of life’s battles. Do you have support in these areas, peeps who are good influences. Informed? Any community centers with relevant programs? ❤️
Just an update. I’ve booked a consultation with a private gynaecologist to get a referall for a ct scan. Although I’ve had an mri I’m still bloated and my tummy hurts. I need answers. And as you all say to keep pushing then that’s what I will do. If this ct is clear then I guess I can’t do much more. I’ll let you know next week. But Thankyou. All of you. Xx
Hang tough, Jennie! In the meantime, is there anything in your diet that you can identify that might make it worse for the bloating? Any triggers you can cut back on? Or helpful things you can add. Wishing you healing thoughts!🌷
Not really. But my upper tummy is very noisy and my whole tummy is just sore and aching. My back also. It doesn’t feel like diet because quite honestly I’m not eating much at all. Body just feels weird and not familiar to me. Horrible feeling x
just an update. Done another private cA125. It’s now 16. So bit lower. And have a private scan booked for Monday. As I’ve had 3 clear ultrasounds and MRI if ct scan comes back clear I guess I’ll have to look for other reasons for my symptoms. I’ve already asked to be referred to gastro. Thank you all for your support x
How are you, Jennie?
Much the same. Still no answers. Not any better but no worse. Thankyou for asking xx
just an update. Had CT with contrast ,All fine. But have noted large volume varices in pelvis. So being referered to vascular surgeon. Thank you everybody for your support. Hope you are all doing ok. Xx
I’m sorry. You’ve confused me a little bit ?
I apologize for for my communication skills. Can you share where I am confusing?
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