I decided to write this down for two reasons. Firstly to "vent" and secondly for any lurkers out there who are in the same position as me; no diagnosis, but a nagging doubt in the back of my mind that things won't be so good.
I started out last year with horrific pain (pulling in my stomach and radiating through my hips and legs), very very heavy flooding, and irregular periods. I eventually had swabs and blood tests and a smear. All these things came back as fine apart from the smear. I really thought I was going to get a diagnosis of Cervical Cancer as I couldn't see any reason why the problems I was getting could be anything other than sinister.
I had treatment for high grade abnormal cervical cells and had the all clear from this in February with the knowledge that this was not the cause of my problems.
Back to the Dr a few more time and really lost the plot! I was missing time from work, my periods were getting stranger, and I was getting new symptoms; frequent urination and bloating. My GP eventually agreed to send me for an ultrasound, and suggested that it was unlikely to reveal anything, but there was a slim chance it could be a bad fibroid or endometriosis.
Well, I had the ultrasound and they discovered a 3cm cyst on my left ovary, multiple ones on the right ovary, and a small awkward fibroid in my womb. The technician asked if I had had any ovary pain symptoms. Well, I have, stabbing pain when I sneeze and during intercourse - it just all paled into insignificance at the time as the bleeding and pelvic pain were so much worse.
I now have to go back to see the doctor in a few weeks to discuss the results of the ultrasound. I know it is highly unlikely that it is ovarian cancer, but after speaking via email to the wonderful Ruth (Ovacome's Nurse) I am going to push for a CA125 test. At 28 I know I'm young, but I was also young to have high grade abnormalities on my cervix after always having clear smears, so I'm not taking any risks!
If you have mad it this far through my ramble, thank you. I really do not think I have OC, but hoping that if one other lady finds this useful then it will be worth it. Oh, and I will update when I know anymore.
Thank you to all the amazing strong ladies out there and sending out healing healthy hugs x x x x
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Cloudyrain
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Good luck with your discussions with the doctor Cloudy. Would it be possible to bring the appointment forward so you don't have to wait and worry so long? Or could you ring him/her and get the CA125 test as early as possible? Get it out the way then you can concentrate on what are causing your symptoms. Fingers crossed for you that it is not OC and that you get a useful diagnosis soon. Angela xxx
Thank you! I called them and asked for the test so that when I go and see them about the scan results they would have the blood test results - but apparently efficiency isn't on their agenda and I have been told I will just have to wait for the scan results to be checked and returned before they decide! I'm quite positive about it all really, I'm 99% sure it's nothing, it's just that 1% that's annoying! Thank you very much for your reply, I appreciate it, especially for the reassurance that I am right to push them!xxx
Hi Cloudy, hope you get on ok with the doctor- I had a much larger cyst that did turn out to be a very, very rare form of tumour but your case doesn't sound the same. However, be persistent: it's your body and you know if it's telling you something is wrong. Good luck and a hug!
Thank you very much for the hug! It is very much appreciated, especially as you have obviously been through the mill yourself. I hope that you are doing ok and have had the right help and support. I understand it must be difficult when handling any bad diagnosis, but would assume when it's a rare one too that it can be difficult to get the answers to the questions. Sending you love and a healing hug xxx
Thanks for the hug- yes, the mill just about describes it! However, the cyst was removed whole alongside a hysterectomy and, other than a CT, I have not had to have further treatment. Luck does not begin to describe it.
I'm pleased to see no more treatment needed for you. Oh, and hope you are feeling ok after your hyster, I know it must be hard as it is a major op and so many people don't realise that. Lots of gentle healing hugs to you!xxx
Wishing you all the very best - it sounds like you've been having a really tough time getting a diagnosis, and that you've been doing fantastically by keeping on at the doctors - very wearing I know but hopefully your mind can be put at rest soon.
Thank you very much for your support, especially today when the bloating is ridiculous, my trouser buttons are bursting!
I read thar you are looking into IVF and wanted to wish you all the best for this. My partner and I have been trying to conceive for the last 18 months, and I can understand why you are taking this route. As you rightly said, a baby doesn't define a women at all, but if it is important to you I personally feel I need to try, and if it's a definate "no" for me in the future at least i will have tried.
Good luck with whatever you choose and thinking of you too xxx
Thanks for that Cloudy, to be honest we were 'forced into' IVF by circumstance when I got diagnosed and had to have my ovaries removed! Thank goodness the doctors were able to save some of my eggs. Like you, I feel like if it doesn't work, at least I will have tried my best, before exploring other ways to have a family. Keep us posted on here with your progress, hoping for you that you get a diagnosis soon!!
I am the same age as you and have a 7cm (was 3 months ago) cyst (doc calls it tumour) on my ovary (only have one as other was removed in 2008). I had a CA125 last Tues to see if anything sinister is going on (his words) as he didn't like the rate it was growing. I have pain in my side which goes down my leg at times, terribly heavy periods, I also get vaginal itching at certain times of the month which may be related I don't know. xx
Oh gosh, that is similar! It is difficult sometimes for me to work out what is period related and what is cyst related (or Shakey as I have decided to call him - as in Shakespeares 'Cyst-er' - got to keep the humour up!) I sometimes think it's all inter-related. I do get a bit itchy at certain times too, but I think it's related to having to use pads for the bleeding as tampax is a bit painful and I think I just have nappy rash!
Thinking of you hon and hope you get some answers soon; I'm seeing my GP next Tuesday so going to ask for a gyne referral and a CA125 test.
I can't believe your GP hasn't done this already. I went to my GP at the end of February with some very generalised symptoms - bloating, constipation, getting fully quickly and just general discomfort.
Right away my GP ordered some urgent blood tests and by the next day I was called back into my GPs office to be told I was being referred to gynae on a 2 week referral - apparently my CA-125 was 2444
Well, got the results of the scan from my GP. My left ovary has a cyst that appears to be clear fluid and functioning. The thing they are more worried about not is the right one. Although it appears to have multiple cysts it is bigger and denser than they would expect for a polyscystic ovary. At 48mm it is 2mm too small to get me a referral for an immediate investigative lap, so have to have another ultrasound. The consultant who reviewed my scan recomended a scan 6 weeks after the first, but as usual it took 2 weeks to get the report through, and there is a 6 week wait for scans for this people not being admitted through A&E or via an urgent consultant referral - which I haven't got as they won't refer me until the second scan is complete.
I asked my GP for a CA125 test, and although reluctant she agreed to do it as part of some other tests she wanted to do on my blood (glucose ect).
On the news today they are saying teenagers have to visit their GP 4 times before getting referrals for cancer. Personally, I think that women of a reproductive age have to visit for about 12 months!
So sorry to hear about your nightmare. When I was 26 I had so many obvious symptoms, I knew I had ovarian cysts cos I could feel them and my stomach was huge, was exhausted etc.. I kept going to the drs and they kept telling me I had all sorts of things ie. urine infection, back injury. This went on for a further 6 months. I was so scared because I knew I was ill and I wanted to believe them. After a night of dreadful pain in my pelvis I went to casualty. They had to examine me and I was in hospital within a week for op for ovarian cysts. I was diagnosed with ovarian cancer, I was really lucky because it had not become invasive. This was 35 years ago and the tratment then was full pelvic radiation. I can't believe drs are still so ignorant. The point of my writing this is that you have to grasp this, don't let the drs put you off. Look after yurself because in the end it is you who has to deal with the effects of their incompetence. Make a huge fuss, go to casualty tell them you are in pain, don't let them play with YOUR life anymore.
Whatever it is I am sure you have had enough but if it is something serious it needs dealing with now. Because I waited so long I couldn't have children but 12 years later I adopted the first of two daughters from another country.
I know I was lucky to wait so long and only still have stage one but it happens and people do survive so get going summon your strength and fight for yourself.
I just thought I should update anyone who remembers me - and all the lovely ladies who posted on here.
I have recently come out of hospital after having a laparoscopy and, very luckily for me, having widespread endometriosis and cysts removed.
It has all seemed to drag so long - but the longer things went on the strangely better I felt as i knew if they were at all concerned they would have moved things along faster.
I hope you are all ok and want to send you all my love and thanks for being so supportive xxxxxxx
I'm 16 years old and I had the same problem I have a small ovarian cyst on my left ovary. It hurts like crazy and I'm not one to ever have cramps but now I do really bad. I also used to have light periods now they are heavy.
I have very similar symptoms to yourself.. I have a ovarian cyst., but it really hasn't given me any problems until the last 6 months, I have a normal regular period but I also cramp and spot bleed in between.. I had a smear a couple of days ago,and now waiting for the results., I'm just a bit worried as I haven't had a smear for almost 4 yrs, which is really really irresponsible.. I'm petrified I have cancer.. Can anyone reassure me in any way that Iogjt just be alright 😄
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