It's been a bit of a rollercoaster I have to say.

I had 2 appointments over the weekend. The first one was with a private gynaecologist ( kept it in case NHS had long wait times ). Anyway he saw me for 5 minutes and told me there is nothing wrong with me, I clearly just have an endometriosis and need to rebook with endo specialist and sent me on my way. Didn't look at my scans, read the brief report from GP referral and told me my blood test was high because of the endometriosis. I told him my GP advised me that it may be cancer and he instantly denied that idea. I told him I also have another appointment the next day through NHS which he advised me to still attend. So I left that appointment feeling like an idiot and a hypochondriac and everything in between. Very glad it's not cancer, but felt embarrassed I was so dramatic about it ( if that makes sense)?
Fast track to the next day where my husband drove me an hour to this appointment, dreading another consultant treating me like an idiot, but in high spirits as at this point I don't have a cancer. All I was concerned about is to get surgery done to remove the cysts as the pain is constant and really effecting my mobility ( normally active person ). So this gynea consultant was much nicer, actually took his time to explain to me why I'm struggling to walk and move and it's hurting even though I'm sitting down and that I constantly look 8 months pregnant might be all to do with my large complex 8cm cyst that is heavy ( creating pressure) and pushing on my spine and other organs. He then carries on telling me he can't operate on me as I need to be treated by MDT due to my symptoms, the high blood results and the fact there is no guarantee the cysts are definitely benign and other reasons cannot be excluded. He finished it with, I don't think you have cancer, but we have to rule it out. So he has now urgently referred me to gynea oncology. 
You can then imagine my mind has gone back on Google thinking I have cancer and at what stage it may be....  I'm actually disappointed with myself how dramatic I can be when the C word is mentioned! All this googling is really not helping. 
I have been told I should expect to get a phone call with an appointment date by the end of this week. 
I'm pleased my husband went with me to see the NHS consultant because I don't think people would believe me this experience. 
Since the weekend I have done the following, apart from googling every single word in my new referral letter:

1. I have booked to see private endo specialist as NHS would probably take years for them to operate on me. ( I'm doing this alongside the NHS process ) 
2. I'm reminding myself that being referred to gynea oncology is the routine process and more then 9 out of 10 that are referred to oncology don't actually have cancer. 
3. trying to keep busy as I'm the most impatient person ever!! I haven't been able to work properly ( my job is heavily behind desk, in the car, with back to back meetings) and I just haven't got the strength and the pressure in my back is just making me miserable and not able to sleep properly. 
 

I will update once I see the oncology consultant, if anyone wants to hear from this rambling mess! Even though I have this fear of the gynea oncology consultant looking at me and asking me why the hell have I been referred to them if I only have endometriosis. So prepared for that situation too.  
 

Apology for the long blaaa. I really thought I would manage my reactions and emotions better in these situations, but I'm a bit of a mess and feel like a fraud ( I'm now questioning if my back is really that painful and is it not just in my head? ). There are people with cancer who need these appointments and all I want is to have these cysts taken out so that I can get on with my life. 

Hope that helps, or at least provides some amusing bedtime reading. 

Hi, I am sorry to hear you went though this. I wondered how things went for you once you got referred. I am in a sort of similar situation. I was very unwell, weight loss, pain, sickly, bloating etc- found to have multiple cysts / lesions including a solid one. (This was found on ultrasound). I am now due to see gynae on Thursday and wondered where it’ll go to next. I know many end up being benign but like you my ca125 was over 300. Hope you are doing well and please update if you are able. 

x

Feel free to pop over to Jembers post, there are a few of us on there dealing with complex cysts 

Feel free to pop over to Jembers post, there are a few of us on there dealing with complex cysts