I was here last May and symptoms still going!

Hello

When I came to this site originally, I was so touched by the support and advice I received, so I would like to call on you lovely ladies once more, if that is okay?

My symptoms haven't changed over the past nine months, I think I just got used to them after being told it was nothing. I lived on painkillers. My periods were normal, albeit quite heavy. So, I moved away, and am now living with some friends.

I noticed a couple of months ago, when I first arrived here, that I was urinating all the time - more so than before - I have been keeping a tab on it, and on average over the past month, I am going 19 times a day. The pelvic pain has gotten worse, and my periods are all over the place again. My last period was Sept/Oct and lasted for a month. I have only had spotting since then. The spotting has been every day, until last week. I also have the odd watery discharge. Bloated belly, back pain and sore legs waking me up at night.

I had a scan a couple of weeks ago, and apparently I have a number of small fibroids on my uterus, but the ovaries are fine. The last scan I had in June, showed nothing at all.

I found out over the weekend that my late mother had a hysterectomy when she was about 28 because of bad cysts on her ovaries.

I am going for a CA 125 test on Monday.

Whew....after all that, here is my question. Is it possible that I have had these symptoms for all this time, and that it is only getting worse now? This will be the first time I have the blood test and I am worried. Or if it was ovarian cancer, would it have been obvious by now?

Thanks for any advice and help.

37 Replies

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  • Hi Teabiscuit,

    I am sorry that you are still having problems, it is hard to tell whether the symptoms you are getting is caused through the fibroids, I think fibroids must give people problems too, at leas you are having a blood test, and things seem to be moving forward, as far as ovarian cancer is concerned people have symptoms quite a long time before it is diagnosed unfortunately.

    I know it is hard not to worry but it is impossible to tell until you have had all the relevant investigations, I would think as you have had a scan, it would seem likely that your problem is fibroids but I am no expert, it is the waiting for results that are hard.i hope all will turn out well for you, we are here to support you as always.... best wishes love x G x

  • Thank you so much, Gwyn. I agree that it might very well be the fibroids, however, the GP said that they were too small to be causing the problems! So that's what got me thinking about ovarian cancer again - especially after finding out about my mother. Nobody is sure if she had cancer at all, or if it was just the cysts.

    Thank you again. xx

  • Hi Teabiscuit, Like Gwyn said it could well be fibroids as a friend of mine had fibroids that caused her a lot more discomfort and fatigue than my borderline tumor caused me. You really do need further investigations because you are obviously worried. I had my symptoms for over a year before I went to see my GP. I can't believe I ignored them for so long. Bloating, pain in my pelvis area, constant trips to the loo, loose bowel motions, pain in my shoulder when eating and watery discharge that would come and go. I eventually went to see my GP who took my symptoms seriously ordered a CA125 test that came back at 229 and I was immediately referred to hospital. Good luck and keep us posted. Kerry x

  • Thank you, Kerry. I will be sure to let you know what happens when I get the results of the blood test. Very interesting to hear about your friend, I hope she is okay now. x

  • Hi Teabiscuit

    I used to work with a woman who had exactly the same symptoms as you and it was fibroids which she had to have removed as they had grown to quite a large size. The fatigue and bloating were a particular problem. That was later linked to a allergy to wheat. If you have had a scan and (all) they have found is fibroids and the ovaries are clear, it does look good. What sort of scan was it?

    Best of luck and please enjoy your weekend.

    SA100

  • I had a pelvic and transvaginal ultrasound, SA100. I am feeling a little less worried now after the replies here, and think it might just be the fibroids. But I can't stop thinking about how many women have had things missed on scans and the fact that the GP suggested the CA 125, I didn't suggest it to him, after he said the fibroids were too small to be causing issues.

    Grrr, what to men know anyway? If they had half the issues we do, there'd be a cure for menopause, childbirth would be painless and gynae issues would be sorted in an instant :-)

    I am a worrier at the best of times. Thanks for your reply. x

  • I am at a loss to see why you didn't get a ca125 test when we adviced you to in May.... you have had an awful lot of worry since, and allthough a ca125 is not always an accurate test it might have been a lead to give you more tests, but at least now things seem to be moving along and I hope your fears are unfounded, thinking of you love and best wishes x G x

  • My GP at the time wouldn't do one, Gwyn, because he said that as he was going to do an ultrasound, the blood test was pointless. x

  • That is so awful, I am so sorry you have had to wait all this time, it really is disgraceful, for the sake of a relatively cheap test, I do hope that you will find nothing untoward my thoughts and prayers are with you love x G x

  • Hi Teabiscuit

    My OC was diagnosed after I had had fibroids for a while, I think it was a couple of years. However mine was diagnosed after a series of ultrasound scans then a Trans-vaginal scan, then a CA125 test. They kept saying they didn't know if it was cancer, but I had a hysterectomy after my CA125 came back as 545. Mine was borderline OC. IM very glad I had the hysterectomy though ...they may not have found it if I hadn't! Why don't you try logging on to ovCome.org.uk. Go to the option marked BEAT ovarian cancer with Ovacome and scroll down to the symptom tracker. You can record Ll your symptoms on this and print it out to take to your next appointment. It has credibility amongst the medics, I believe. It may just clarify the situation for you.

    Hope it is just fibroids ...they're a bugger though, I know after having them for years :-o

    I just feel so much better after my hysterectomy, and I love wearing white trousers in the summer ;-)

    All the best in getting an answer

    Love Wendy xx

  • Sorry, I just re-read and realised I put a iPod error in my typing. It's ovacome.org.uk I hope you find it this time!

    Love W xx

  • Dear Teabiscuit

    I'm really sorry to hear you're still worried about all these symptoms and you feel you haven't had the correct treatment. It looks as though the GP in your new area is taking time to go through a number of tests which will at least tick off the things that are not causing you all these problems. You've had the SA100 and this should have picked up the size of the fibroids and whether there were any worrying masses. It seems that was OK. It's good you're having the CA125 blood test next week because that can g some way to discounting ovarian cancer - though the CA125 doesn't necessarily work for all women.

    You don't mention your age and your general health and wellbeing. Generally Ovarian Cancer doesn't affect younger women. It most often manifests in women who are nearing the menopause. Recent words of wisdom are that it's thought to be linked to the fact that women are ovulating longer. I've also heard that the combined contraceptive pill is thought to be a good thing if it suits women because it actually stops ovulation.

    I do hope your GP can get to the bottom of all this pain and uncomfortable symptoms. Sending lots of tea and sympathy.

    Best wishes and love xxx Annie

  • Whippit, I didn't have an SA100 test, that is the name of the lady I was replying to :-) I don't know what that test is.

    I am 47 years old, and my last doc just put all my symptoms down to the perimenopause. He could be right, I don't know. Generally, I am not feeling good at all, and haven't for months. I don't remember what it feels like to feel well and have some energy. I am just glad I am now getting some tests, and now I know I have the fibroids, from reading here, they could be the trouble.

    Wendy, my doc said that if it was just the fibroids, I could have them taken out without a hysterectomy (not sure what that would entail). But if i am honest, I'd prefer the lot taken out anyway. Then no more symptoms, and I'd feel like a new woman.

    Thank you for your kind words, ladies. x

  • I think they cut out or laser the fibroids. I was offered a hysterectomy when I was 41. If I knew then what I found out when I was 52 ........... Hindsight is a wonderful thing. If I had my time over again, I would go for it! No period pain (after the slight discomfort of the healing process, I have had no pain whatsoever), no bleeding, no sanitary protection, freedom from all that. It's good. What don't you give Ruth a ring next week on 08453710554

    All the best

    Love W xx

  • Always trust your instinct. When I initially went to my doctor over 2 years ago, the said it was a pevic inflammation, and gave me some tablets to take. i never took them because i knew that wasnt the case, but went back 3 months later as advised at my previous appointment. It too another year of trips back and forth to my GP, lost appointments at hospital, and finally some scans, which resulted in an operation that finally confirmed borderline ovarian tumours. Whilst the NHS is in general a great facility, in my opinion, they seem to evaluate symptoms the wrong way round. They start with the easy to treat, least serious condition, and finally when you complain so many times, they look at the more serious options. Now, I am about to go into hospital for the second time as they believe the tumours have returned on my other ovary. you would think, that with previous history, when I went to my doctor with symptoms this time, I woudl have been referred straight back to the consultant, but no. I was told i had to wait 3 months to see if the symptoms went. Luckily I decided to contact the consultant, who I am still under, for advice, and she referred for another scan, which picked up the new growths. So it remains to be seen what happens, but I am now facing the prospect of a hysterectomy and removal of my remaining ovary. Not that I believe this woudl be any different, but it could have been 3 months worse if I had waited. I have always foudn this website a great source of comfort in my journey. But my advice is really, listen to your heart. you know your body better than anyone else, and dont stop asking questions until you get a satisfactory answer. I hope you get some proper answers this time. Best of Luck x

  • Tracy, I am so sorry to hear the struggle you have been through. I agree about listening to my instinct - I know there is something wrong, and with one doctor telling me it is perimenopause, and another saying the fibroids are too small to be causing problems and adding that it is all because I am anaemic, - I am beginning to think I am going mad! I'll see what the test on Monday tells me.

    I hope things go well for you and wish you the very best. Thank you for your kindness x

  • ........oh, I know the anaemia thingy too, pre-diagnosis. I had about six courses of iron tablets and all the horrible constipation that went with them :-( I was told it was my job, my menopause, stress, anaemia, TATT ...the list went on. I think you may find the symptom tracker may clarify things to print out and take to your appointment, even if you just fill in the symptoms you're experiencing.

    All the best

    Love W xx

  • Wendy, I think I will give her a ring, thanks, and I have started the symptom tracker. Oh hell, the iron tablets are a nightmare, I hate them!!!! Glad to know I am not the only one with lists of 'diagnoses'. For one thing, it will be a relief to find out exactly what is going on, whatever it is. x

  • Hi Teabiscuit. My friend who had the fibroids was TATT and very run down because of the heavy periods. Since her surgery to remove them she is like a different person and is so much better. Kerry x

  • That's been me, Kerry. But since my last period, which lasted four weeks, I haven't had one. So no period for 3 months now - but regular spotting, tiny amounts. So I suppose I am still losing blood which would account for the anaemia. I hear so many stories of women feeling better after getting them out, so if the blood test is fine, I have to speak to the doc about surgery. x

  • I had my CA125 test on Monday and called the doctor's rooms this afternoon for results. The receptionist said that they are in, but the doctor hasn't read them yet, and I am to call tomorrow.

    I know I am being silly, but every other time I have had blood tests, when I've called for results, I usually get them right away over the phone because they are normal, now I am worrying that they are not normal.

    I hate this waiting and not knowing!

  • Just sending my best wishes for you results tomorrow, thinking of you love x G x

  • Thank you for your thoughts, Gwyn. I called, and again was told that the doctor hadn't read the results yet, and was asked to call tomorrow.

    This isn't doing my state of mind any good at all.

  • This is disgraceful to give you all this worry, I am so sorry, when I had my ca125 test done through my GP I rung them for the results and the receptionist read them out to me, she said I had a risen blood count, so I then asked her the number and she told me, so you think you could ring them back and ask her to read it out to you?

    I wish I was there with you to fight your corner. best wishes love x G x

  • I did ask her if any numbers were available - she said that there was nothing there apart from a note saying that the doctor hadn't read them yet. It does worry me because surely if it was all fine, it would say so and the receptionist would be able to tell me?

    Your support here has been invaluable, Gwyn, thank you xx

  • Or do you think I am just being paranoid?

  • I think you are being perfectly reasonable, you are bound to be worried, and just for the sake of opening an envelope it doesn't make sense, but I wouldn't

    read anything into it, I

    don't think they know

    what it says, so are not trying to hide something,

    but very frustrating for you best wishes love x G x

  • Ps I hope this makes sense as I was writing in a small box x G x

  • Thank you. It does make sense, and you're right, they are not trying to hide anything from me :-)

    Let's hope they DO have the results for me tomorrow!!! I can only phone after 1pm so will need to try and stay calm tonight and tomorrow morning. x

  • I will pray for you tonight, thinking of you love x G x :-)

  • Just called, Gwyn. Still not been read (can you believe it), but the receptionist said the doctor will call me this afternoon. So, just sitting on tenterhooks now waiting for him to call. x

  • Well doc just called, apparently the CA125 is fine!!!!! That's a relief. So now I just need to wait for the gynaecologist appt to find out what to do about the fibroids, as that is obviously what is causing all my issues. Thank you for all your kind thoughts, and I wish you every happiness.

  • I am so glad that everything seems fine, but wish you well on your future treatment.

    Love x G x :)

  • Thank you. I wish you all the very best, Gwyn xx

  • Glad to hear your reslts are good, it can be such a worrying time good luck with your appt. All the very best Karen xx

  • Thank you, Karen x

  • Hi teabiscuit, Let us know how you get on. Kerry xx

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