New here and scared!

Hi, I am new here - sorry if this is in the wrong place.

A few weeks ago I went to my GP as my anxiety had reared its ugly head again. She popped me on meds and took some bloods. I thought no more of it until I got a call asking me to go back in for urgent repeat bloods. Turns out I have low platelets and have to go to hematology for investigation. This worried me sick because I am a 'googler'. Anyway at the initial appointment I mentioned that I was having some abnormal bleeding. (On mini pill so shouldn't have any). I thought she would just tell me it is hormones as am 42 now so I expect to start the change in the next few years. No, she sent me for a scan. The sonographer did an eternal and internal scan and at the end I asked if she could tell me anything. She said 'I haven't seen anything that would have me jumping up and down in alarm' and I should call my GP in a week. Feeling relieved, fast forward a week and I ring the doctors for the results and then I have to wait for the doctor to phone me back. She told me I have cysts on each ovary (I picked up 1 1/2 inch) but it was hard to hear as I was at work and English is not her first language so not always easy to understand over the phone. She said she will refer me to the hospital on a two week wait. I also have to stop taking my anxiety meds as this affects my platelets. Cold turkey and she won't prescribe anything else yet. The following evening she rings me (7pm) to tell me I need to book an appointment for a blood test for my ovaries. (I am guessing this is the CA125). Again, panicking especially as she rang me out of surgery hours.

There are a couple of things running through my mind:

I have no symptoms of anything except the bleeding (and maybe this is because of the low platelets anyway). I have no pain, no bloating, nothing.

Would the sonographer say what she did if there was anything to be concerned about? If she had seen something sinister would she have got someone else in to look and would I have been waiting a week for results?

How long does it take for CA125 results?

One half of my brains says it is precaution, the other thinks there must be something.

Sorry for the waffle, worry and no meds is not a good combination.

Thank you.

[Lyndy]

Hello AliciaC

It's very natural to worry- unfortunately this doesn't make results turn up any quicker. It is a bit pants that the Doc took away your anxiety meds just at the moment when you will be most anxious without offering anything else!

No one can second guess what the results will be- I had my tests at the same time as a friend - if you looked at the two of us you would have said she was going to have OC but it was me who had it- she had cysts.

All you can do is distract yourself, find some good support for you ( Macmillan are fab) and wait....

The bloods take a few days but you may have to wait for an appointment before they will tell you what the results were.

Please don't google...! Give yourself lots of tlc while you are in this really stressful period xx L

[Kryssy]

Hi Alicia.

Everyone here understands exactly how you are feeling right now. The fear of the unknown is crippling but trust me, once you get some results and know for sure the fear will dissipate and whatever the result your fighting spirit will kick in. I was told this by a friend, when I was beside myself with fear, before I got into the "system", but sitting waiting to see the doctor for results was when the fear left me. Of course I get the odd sad day but it's nothing like the fear I had when I didn't know what was what. It virtually consumed me.

Look after yourself and try to think positive. As Lyndy says - DO NOT GOOGLE!! You'll frighten yourself to death. We are all individuals and everyone here has different experiences. What you will find here is support, friendliness and love.

Let us know how you get on please.

Kryssy xx

[Marieloiuse in reply to Kryssy]

Hi Kryssy,

I totally agree with your comments. The fear of the unknown I found almost impossible to deal with. I didn't want to go to sleep at night as waking up it hit me all again (not that I could get to sleep anyway!). As perverse as it sounds, I was relieved when I got a diagnosis as I felt I knew then what I was dealing with.

Hope you are having a good day.

Catherine X

[Hidden]

Thank you both for your responses. It is reassuring to know that there is support out there whatever the outcome. I am the worst for googling and I also know how bad an idea it is but I can't help myself. I guess the key is not to end a conversation with a health professional with unanswered questions. My bloods are being done on Tuesday and I can (I hope) at least ask the practice nurse to read my notes. Maybe if she can tell me what kind of cysts they are it might help me stop worrying as much.

[Marieloiuse]

Hi Alicia,

Of course a difficult and worrying wait for you; we've all been there! You read all sorts of significance into the actions of the medics. I certainly did. Trying to second guess their actions prediagnosis. 'He didn't seem concerned.... she phoned me at home....he looked serious'. It's awful. But your anxiety will in all possibility be over soon (OC is rare). I would be heartened by the fact that your medics seem to be totally on the ball which is certainly not always the case.

The amazing ladies on here have had much more dealings with OC than I have and I'm sure they will have some sound advice for you.

Hope all this is behind you very soon.

Catherine X

[Hidden in reply to Marieloiuse]

Thank you Catherine. The support I am receiving means an awful lot. I have a call from a different doctor at 5.30 today (at my request). Hopefully she will answer some questions for me.

[January-2016-UK]

The waiting is torture but do try and distract yourself with some enjoyable activities. If there is something of concern it is already there and no amount of worrying will change that. If there is something, will feel better once you know and have a plan and if it's nothing to worry about at least you know you did the right thing and followed it up.

[Hidden in reply to January-2016-UK]

Thank you. Going to try and do some craft bits in a bit.

[Hidden]

Hi Alicia. If it's any help to you, my initial symptoms of ovarian cancer did not include any bleeding - it was bloating & groin-pain. My diagnosis was speedy; I was grateful for that. I was sent for an ultrasound. The nurse called a doctor in. He told me he couldn't see my vital organs because there was a mass there. This is all quite different from your experience.

Bloods can be analysed within 2 hours. Of course, that's not to say they will be done that quickly.

As said above, distraction is the best thing for you at present. What distracts you the best? Friends, a book, TV, computer games? We all know here what the uncertainty is like. But for the time being, repeat after me "I promise I will not Google again". Say again - "I promise I will not Google again".

I know that everyone on this site wishes you well. Good luck. Pauline.

[Hidden in reply to Hidden]

Thank you Pauline. Google is your friend and your worst enemy. I would be shouting 'don't google!' to anyone else in my position, but I never listen to myself.

I am currently sitting here after a horrendous weekend of worry thinking that my doctor has blown everything out of proportion. (She isn't my usual doc). A few weeks ago she diagnosed Throbocytopenia and said she was making an urgent 2 week wait app for Hematology. (My platelets had dropped but only to 97, which whilst not 'normal', isn't as bad as it could be). This never happened. Currently on a waiting list and expect to be seen within 18 weeks. She said she would chase it last week but haven't heard. Today I got my booking letter for the Gynae clinic at the hospital. Earliest appointment? 7th Dec. I rang the booking people and they said whilst it was marked as urgent, it wasn't put on the two week wait system (like she said it would be). So now I am wondering is it now not that bad that I have to be seen early? Has she made a mistake and I do need to be seen early? Am I going to worry until December? So confused. Fortunately after the weekend I decided to ring the surgery this morning and ask for a call from a doctor and luckily, it is not the same doctor. I feel a bit more confident that this doctor will give me some proper answers and chase up the referral if it is needed. Just have to wait now until 5.30!!

I am a crafter, and whilst I have not been in the mood at all in the past few days, I will force myself to make something. Have a few birthdays this week so will do some cards.

Thank you everyone for your support. I will keep you posted.

[Shylade]

I am so sorry you are going through the wait process. Good news and bad news comes with this time interval of hell on earth. The worst part my mother said of all of it was the blood tests every 3 months to see if she could plan anything until the next 3 months.

If the wait is hell, google is the devil. If you must google, find happy stories because while rare in written form they are the rule rather than exception. My mother had OC, she carried a BRIP gene which I inherited. I had voluntary removal of my ovaries last month. They were covered in cysts, the pictures put me in to shock and I was worried we were too late. Pathology said all tissues were perfectly normal. So here is a good story to think about

I have been an RN for over 15 years, I googled OB/GYN stuff because I am an ICU cardiac nurse. I really know nothing about these things since school. I had dx myself with cancer, brain tumor, and Parkinson's by the end of my search. Just don't do it. Let us know how you are!

[Hidden]

Thank you all for your support. I am in a (happy) state of confusion, shock and anger at the moment. I spoke to the second doctor yesterday. I had waited all day for her call and was in a bit of a state when she rang. She didn't initially understand my worry. All my notes said were simple cysts she said there was nothing on there to suggest urgency or that would warrant a two week wait appointment. (Despite the initial doc saying I would be on a two week wait and attending a cancer clinic). She said my referral to gynae is purely for the bleeding. They are trying to speed up my Hemo app but there is nothing to worry about with the cysts as far as she can see. I still have the CA125 today, but that is routine. I am relieved that it is not as bad as I had been led to believe but angry beyond words that the original doctor has let me think the worst at the same time she stopped my anxiety meds! I am going to put a request in that I do not see her again and then put a complaint in. I just hope this is a one off and she hasn't caused anyone else such pain and worry.

[Lizchips]

I get my ca125 results in about an hour. Usually when see Dr after blood work. It's hard not to worry. Don't stress stay positive.