Hi, 

I had all of the symptoms that you have- it wasn't until the 3rd telephone Dr's appointment that I was advised to go to A & E as I could of been waiting a while for tests. I was diagnosed with 2 cysts one on each ovary with the cyst on my right ovary being 32cm! After being admitted to hospital I was operated on 3 days later. I am now six weeks after the surgery. If you are in a lot of pain and are struggling you might want to go to a & e and they hopefully might speed up the process. 
Hope this helps :) 

Hi

I know you posted a while ago but thought you might see this. Are you fully recovered now and how long did it take to be fully fit.

How long did you wait for op?

I was misdiagnosed in 2018 as a time waster by the GP who refused to refer me. Now have a 27cm 'suspected cancer'. It is very painful and restricts my breathing and lots of pain as everything is squashed.

I was initially told in August that I would have surgery within 2 months. Now they have told me I won't even be on the list until I've seen the consultant to discuss its 'management'. And then it will be several months wait. There are no appointments available to see consultant until next month. 

I can't believe I'm not already on the list for surgery and wonder how exactly they are going to 'manage' it. It seems to have got even bigger since my ct scan beginning of September and there is just no room left. 

Thank you

Hi! Im recovered from the cysts, though i have other gyni problems now that the docs dont seem to care about. 

My cysts also were so big that they pressed on my stomach, bladder and made me so breathless so i understand how horrible it must feel right now for you.

I got my scan in mid august 2020 and was refered for an urgent operation straight away, i got my surgery on the 7th of october 2020 and was fully recovered by around january. Mine were non cancerous so i do not know why they need to stall your surgery to 'find ways to manage it' if they suspect cancer(i hope it isnt). My doctors never mentioned any managing to me, just that they needed removing asap(i had 3 in total). 

I really think you should get in touch with your doctor and talk over why they cant give you urgent surgey already, as i believe you definatly need the surgery more urgently that what i got! 

Just keep pestering all your doctors until they listen, thats the only way i got through to them in the end with the cysts, i even took 2 trips to a&e to try and fast track it a little.

I really hope you get throught to your doctor and get this surgery asap, lots of love and healing to you :happy: 

Hi, one of my cysts ( the larger one) turned out to be cancerous but it was caught early. I  I was diagnosed with stage 1C ovarian cancer as it was only in one ovary but the cyst was leaking. Due to this I had to have 6 rounds chemotherapy and a total hysterectomy as a precaution. The second surgery got cancelled a couple of times due to going back into lockdown but I was really lucky that it was only delayed a month. I have now been in remission over a year and have regular check ups and can't fault the consultant I am under.
 

I also had very similar symptoms to you so understand how awful it makes you feel. Keep trying to get through to your doctors and hope they understand and try to fast track you. You would hope you should be fairly high priority if they suspect it to be cancerous. Fingers crossed it's not. Have you had a CA 125 blood test?
 

When I went to a&e they asked why I hadn't come in earlier as I looked 6 months pregnant. I was admitted and had emergency surgery 3 days later. I was extremely lucky as that isn't the case for many. 
 

I hope you can get the doctors to listen to you and it isn't long until you get surgery. Sending you lots of love. 

Hi

Thank you for your kind words.

I had a CA125 blood test 25th Aug but don't know the result. I've tried finding out but no one will tell me. I've even done a subject access data request to see if I can find out anything that way.

I seem to have been very unlucky with who I've seen over the last 5 years that no one was interested in helping me or would refer me for a scan.

All I get told is the NHS is at breaking point and there are other people on the list too...

I've been a bit teary so your reply means alot x

Hi

I got my medical notes today. I guess their reluctance to tell me the contents of the letter is now clear.

My CA 125 is 930

I will require the mass removed, both ovaries and surgical staging as there is ascites.

Oh bless you. Im glad you finally got some answers, shame you had to fight for them.

I am hoping your surgery goes well and soon, and that you heal quickly. 

Sending lots of luck and love your way ️ x

I'm sorry it's taken so long for you to get the results. I hope they move quicker now and that you get the operation soon. 
 

Hope you have a quick recovery and sending lots of love your way xx

Hi,

I am so happy that you managed to get treated and are truly on you way to recovery.

After being gaslight by my GP telling me the constant pain I was in, with my back was Piriformis syndrome. After getting know where for over a decade, I finally had enough and found a new doctor, who the sent me for a CT scan. My new doctor told me last week they have found a 27cm mass on my right ovary. Surprisingly I am very calm about it all. I went for an MRI today and the results wont be presented to me for a week now. Reading your stories here, kind of scares me and gives me hope. I have had no symptoms while this thing has been growing inside me, well not the symptoms that are usually associated with this kind of thing. The only reason I went to the doctors was because my back has deteriorated and was in agony.

I am now waiting for what happens next. I am soo grateful to you all for sharing your stories, they inform and give hope to those of us at the beginning of this journey.

It's a great place to be be honest and not have to shelter anyone from what is going on.

I'll update as it happens and let you travel this journey with me and I hope in some way, my journey can help someone else going through this.