should i write to gynae(not a thyroid issue btu don't wnat to post on ovacare forum fro fear of upsetting people

increased abdominal size and persistent bloating (not bloating that comes and goes)

persistent pelvic and abdominal pain

difficulty eating and feeling full quickly, or feeling nauseous

CA125 does not definitely mean you have ovarian cancer.

The National Institute for Health and Care Excellence (NICE) has produced guidance that advises your GP to test for CA125 if you frequently experience:


feeling full quickly

loss of appetite

pelvic or abdominal pain

needing to urinate urgently or frequently

should i write a letter to my gynae after Tuesdays scan - letting him know my thoughts \and that i dont have IBS and if NOT OC then I need to know what is causing it.

(see post under "what shall i do" for Tuesdays scan details and gynae)

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20 Replies

  • I had bloating and swollen stomach, nausea and loss of appetite before being diagnosed with hypo. I didn't have pain, thankfully. Are you on enough medication?

  • not on any meds fro thyroid. since last august when started to get symptoms dr s haven't acknowledged it (but had gallbladder op in august so could be that-had asked dr if it could be as had no follow up appointment btu no response).my next appt is either 3rd or 5th march.need to ask for scan on neck and referral to endo.did meds reduce your stomach.i am so swollen I look like im carrying twins and cannot hide my stomach is reason for gaining 2 +stone in weight over last few years(not sure as have lost weight elsewhere)

  • Hi Just read this bit. It is Ascites, fluid and generally caused by heart valve or kidney disease. There are other causes. Sounds like you need an IV of diuretics, ultra sound and specialist input. Echo,(heart) ultra sound scan for kidneys. often they only scan the bit, they think they need to!

    from my own experience, it does not sound at all lime cancer.


  • gynaes secretary just told me that my ca125 was 15 in october and 14 on feb 14.,not told these figures.

  • Hi They are brilliant, from memory top of range is 30. I do think though that you need to find out the cause. I do not think it is life threatening. I have this problem frequently, known causes.Have you been having diuretics?You should have been and important to drink a lot of water, it helps. Are you swollen any where else? Oedema. this amount of Ascites is virtually always due to hear valves or renal disease.

    make sure you also have renal bloods, U`s and `s, simple ,often done.

    Best wishes,


  • Hello anbuma. I too have this ..swollen so badly I look like about to give birth but after extensive hospital tests I have been left no further forward but I feel it's hypothyroidism undermedicated. ..hope that helps you feel less worried

  • thank you shaws and lola .why is my gp not looking into that.i ahev thyroid problems fro at least 9 months starting with eyebrow hair loss which dr dismissed.does that make you feel less hungry .I have a very poor appetite

    why the pelvic pain I cant stand any instruments beign used ie a scan probe or speculum

  • Hi CA125 can be high for lots of reasons, mine is 2,000 ,not cancer. However, if over range it must be investigated, special scan etc., under a gynae. An ordinary scan will not show this type oi cancer.If you feel full, as soon as you start to eat, this is a warning sign.

    IBS is not a real diagnosis, it is used as " doctor does not know". I suspect this may be a gastro issue., even renal etc.I would also ask GP to dfo U`s and E`s, kidney function tests, these can be a little out, but should not be extreme. If need to see someone ,then a Nephrologist.

    If the gynae is your only specialist and good, then I would write to him on an e mail via the sec, that way , they actually receive the letter.

    I hope this helps.


  • I had exactly the same. Big huge tummy, skinny legs etc looked 8mths pregnant!! Turned out to be huge fibroid...22cms. So Umm yes I was like carrying a big baby. My tummy went down after hysterectomy to remove but then same thing happened 2-3 mths later...the remaining ovary had blown up to size of a rock melon cysts etc so just had op for that...hopefully will stay down now!!! So hard to know so many reasons , best of luck!!

  • when you found the fibroid did you see a gynaecologist?

  • hi there you don't mention anything about scans ?what if any ddi you have?

  • Hey Anbuma! I'm not sure if you were asking me or not? But yes I first had ultrasound, they wanted to do internal but the pain was too bad & didn't really need to. Went then to gyno & he said it had to be removed via hysterectomy due to size & my anemia, (thses types of fibriods/tumors take up a lot of blood!) Gyno did try to remove laptascopically/vaginally but couldn't get it out so ended up with both; lap & open. There were a-typical cells but treatment was to have hysterectomy so it was all good :) are you going?

  • hello yes I was .sorry I should have said your name(same a s mine?)really bad pelvic pain all day especially walking dogs this morning -very slow and painful.walk which normally takes 90minutes (with dogs stopping to sniff etc)took 2 hours.cancelled smear test fro next week cos when at hospital it was so painful she couldn't do it or an internal.

    gynae said everything was normal after scans.

  • Hi 'rose'! Lol That's terrible to have that sort of pain! All I can think then is that a ct picked up 'ovarian incontinence' which can cause pain & I also had a huge adhesion attached to my hemipelvis - surgeon said that causes a lot if pain has stopped now so whatever it was has gone :)....I couldn't even have sex it was dreadful! Hope you find the answer xx'

  • what is hemipelvis?not heard of that term?

  • I'm not sure! I think it's a bone located in pelvis area

  • Hemipelvis just means half the pelvis so the right half and left half. Ovarian incontinence doesn't exist as far as I can make out, incontinence means lack of control so doesn't apply to the ovary.

  • Hi!

    I think you should take advice from the Ovacome community on Health Unlocked. I, unfortunately, have an underactive thyroid ( for 27 years!) and have had a form of ovarian cancer- thankfully only Stage 1. I also looked pregnant, had little appetite and some pain. Since I had a hysterectomy and my ovaries were removed I have had no other treatment except medication for my thyroid.

    Hope you can get a proper diagnosis quickly.


    Anne x

  • confused .same symptoms btu gynae says dont have oc tho contradiction between gp and hospital CA 125 tests/.different levels.dr from 105 down to 37 (dec) and hospital 15 in oct and 14 in feb.,?why I have concerns?

  • couldn't walk my dogs up a hill this morning so caught a bus.tonight tightness in chest, (upper abdo)and neck,pelvic pain .cold all day.d rmay have rang-was a with held call on my phone btu had to take dog to vets so missed it ,no message.probably a cold to have fun with Annie-have aspray to spray on her feet and chin

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