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Complex ovarian cyst and other issues.

Sal85x
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Sorry if this is long. I can't work out whether I'm overthinking or I'm right to be concerned.

 

So I've always had issues with my ovaries. I have PCOS or sometimes scans show I do, sometimes they don't which is weird.. I have a few symptoms of it like hurtuism and glucose intolerance. Had to have IVF for my little boy but my cycles are perfect 28 day cycles and always have been which is why it was never formally diagnosed until quite recently..

Anyway, for years I've had pain particularly when I'm ovulating, so bad I can barely walk. I'm convinced I have adhesions and my ovary is attached to my bowel. Or endo or something so I had a laproscopy in 2013 but they couldn't get to my uterus because everything was stuck to the omentum or something so they've never tried again since.. but I've continued to push, changed hospitals and not much has changed. I was offered the pill which I didn't take. Sometimes sex is extremely painful anyway and the pain seems to be where my "pouch of Douglas" is
 

I had an MRI which was fine and have been being monitored with ultrasounds due to regular cysts I thought nothing of.

i was due to attend for an ultrasound in January but re-arranged due to starting back at uni. Then I couldn't attend the next appointment so contacted my GP and asked for an ultrasound locally for ease.

 

I finally had the ultrasound last Friday which showed a complex 10cm cyst on my right ovary. The sonography was quite taken aback by the size of it and said she would refer to gyny. As I was leaving she said "I think il send you for some bloods" so I was sent for CA125 which I had the same day. I came on my period the next day so I'm not sure if this could have been anything to do with its size. Since I've come on, the pain has gone. 

GP rang on Tuesday and said he was referring me via the urgent 2 week pathway and that it was just protocol so I would be seen quicker. I've been ringing all week for my blood results, I even spoke to the sonographer yesterday (after ringing the department for my bloods) who said she had emailed the consultant and he's definitely received the email as she had a notification it had been read. And that she will refer to gyny for anything that looks out of the ordinary. But she didn't have my blood results either as they go to the consultant.

 

I just received a call today my appointment is on Tuesday. Whilst I'm so grateful I'm being seen quickly I can't help wondering

1 - is it normal that the only person who knows my blood results is the gynaecologist il be seeing on Tuesday..

2 - why did she email the consultant herself and how did she remember she had a ping back that it had been read, if it was just a standard protocol routine thing. Do the sonographers usually email the consultant?!

3. is it always so quick with a "complex cyst?" And is it always the 2 week urgent pathway? The Gp said he'd only done it that way so I'd be seen quicker and the scan results he read didn't indicate anything about there being a solid mass etc which it might have, had it looked particularly cancerous and that complex cysts can turn cancerous so they like to get them out.

I feel like the staff are trying to protect me and it's driving me mad. I'm a student nurse so I'm not unfamiliar with reading blood tests or ultrasounds. I just want my own results before I go for the appointment because otherwise I will spend the next 5 days an anxious mess. I have bad health anxiety because my dad died at 47 from bowel cancer, because I've always had issues with my uterus and ovaries and because the thought of me dying and leaving my 2 year old or not seeing him grown up, makes me physically sick. I'm 36.

Sorry this is so long winded. I don't know who to speak to, everyone keeps telling me not to worry but how can I not. 

  • Hello and thank you for your post.

    I can appreciate that this is a tough time for you.

    A complex cyst is treated more urgently because it can be large, cause symptoms and may in a small number of cases develop into cancer.  I am afraid that I cannot explain the actions of the sonographer and I hope you don't mind me saying that the most important thing for you is that you got referred to see a gynaecologist and this is getting done.

    Blood tests results will usually go back to the person that ordered them but might also have a note saying that they are for the attention of a specific doctor.  Results of any test including blood are not usually given over the phone, particularly by non-health professionals or a health professional that does not deal within a particular area, I suspect that the gynaecologist will want to see them along with he scan results before seeing you and this will be soon. 

    I am so sorry to hear about your dad dying of bowel cancer I can appreciate that because of this you may worry more. I hope you have people around that can support you. In the meantime keep yourself busy and don't search for a possible diagnosis online. 

    I hope you will be okay. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

  • Offline

    Hi there I've just seen your post had to reply as I'm in the same boat. I'm 36 and have two kids and have recently had an ultrasound that found a complex cyst, the sonographer told me it looks totally normal but my GP looked at the scans on Tuesday and ordered a CA125 with urine tests. I have traces of blood in my wee apparently (been going on for months). I got a call earlier today from the hosiptal asking me to come and see a consultant next Tuesday. I asked why the referral had come through so quickly and she said the consultant had reviewed the GP notes etc (the GP emailed her directly) and decided they wanted to see me ASAP. Bit worried now as I've had nots of other symptoms which I've put down to bladder infection etc. I'm anxious too, hopefully all will be fine.

    I would think that the GP surgery would have your blood results if the consultant has them, I would keep trying reception and asking for them.

    I was told they usually monitor complex cysts over 6 weeks to see if they've changed, they did this with me and the second one was apparently fine, cyst hasn't grown but I'm still being referred for some reason.

    Not sure if sonosgraphers email the consultants sorry but here if you want to chat. Looks like we have our appointment on the same day. Take care

     

  • Offline

    Hi l had problems with complex ovarian cysts last years they were found during a colonoscopy, colorectal referred me to gynaecology oncology and l was seen in two weeks. They did MRI and ultrasound TV ultrasound repeated bloods before l spoke to the surgeon who listed me for bilateral oophrectomy and biopsies. During the surgery which l was expecting to be laparoscopic day surgery . They couldn't find the left overy so opened up my abdomen to find it and spent 4 1/2 hours removing extensive adhesions. Very pleased to say biopsies were benign lm glad they were removed as can be precancerous l am over 65 . Adhesions were probably due to    C section, hysterectomy and appendix surgery. I hope. You have a similar outcome and find out what's actually happening soon. My surgeon was easy to contact via her secretary and replied my questions the next day. I have clotting problems. 

    take care 

    Susie

  • Offline in reply to CRUK Nurse Caroline

    Thank you for your replies.

    I requested a copy of my ultrasound which shows that there are 3 septations and the thickest is 5.3mm which is really worrying me as I've read anything over 3mm suggests malignancy. I don't think I can last until Tuesday without having a meltdown. I'm thinking of maybe going private and just having the lot taken out ASAP or am I being dramatic? 
     

    has anyone had a large complex cyst with thick septations and it hasn't been cancerous?  

  • in reply to Sal85x

    Hello and thanks for getting back to us again,

    Waiting for the results of tests can cause a lot of worry. It does sound like you are being seen quite quickly. Unfortunately it is not until you have seen the gynaecologist on Tuesday will they be able to tell you any more.

    It would be very difficult to be able to see any one privately before Tuesday but if you did need further tests or investigations you could ask whether it would be possible to go down the private route if it meant that you got results back more quickly.

    Often an NHS Consultant has a private practice as well. I would wait and see what they say because you may be treated just as quickly on the NHS  if of course you need any treatment.

    Try not to overthink it all if you possibly can. Keep yourself busy and your mind on other things which will hopefully distract you over the weekend.

    Keep away from google which is so general. Even though it is supportive hearing from other members of the forum do remember that everyone is so different.

    Some people find the NHS link called 'Every Mind Helps' which you can see here

    It has useful tips on how to help distract yourself whilst you are waiting for more information.

    We are here Monday to Friday (apart from Bank Holiday Monday) 9am to 5pm Freephone 0808 800 4040 and you are very welcome if you want to ring and speak to one of the helpline nurses.

    I hope that you know more soon.

    Take Care,

    Catherine

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