Hi there hope you are ok?

The symptoms you have described sound  similar to my pain . The pain in the legs abdomen may be related to a growing cyst as it can cause pressure on nerves and the bowel. Cysts can get big without many symptoms and then they make themselves known  I'm no doctor but can tell you I have what they suspect is a large ivarien cyst and the pain you describe is similar and the bigger it has got the more it has affected me. I am due to have mine out and waiting on a date and then biopsy they can't rule it out as being cancer but as my ca125 was in normal range I'm not a priority. If I was you I would insist on a transvaginal  scan and ca125 bloods screening with your doctor. Do not be afraid to ask these questions it's because you are younger they may not immediately screen you for these things. If you get no joy insist on another opinion. I know it's hard but concentrate on being proactive for now you will get answers. Wish you all the best xx

Hi Hannah, 

I have recently had an ultrasound and been told that I have a 3.5cm complex cyst with cystic and solid parts and potentially some internal vascularity (which frightens me when I google it) I had a ca125 about 7 months back now when my symptoms first started which was clear. I'm rebooked for another and I'm scared of the result I'm never in pain as such more just discomfort. Reading your story is scary that they wouldn't consider you a priority for surgery when your mass has suspicious features. I can't imagine the worry you are going through. I will keep everything crossed that you get your surgery soon and that when they do biopsy that it's clear x

Hi there thanks for reaching out and for such kind words.I am sorry to hear you are going through this. As hard as it is stay off google! I've been there at 4am reading through articles and medical journals about what the diagnosis could be. In reality it just makes you feel worse and worry more. I totally get it though you just want answers and a plan to work towards . They have not really come out and said that I'm not a priority I think it's just reading between the lines on my part. I imagine they have to make these decisions whilst considering various factors snd then trying to balance needs  in a pandemic is tough. It may just be my hospital. I got the go ahead for surgery in July then preop was done in August which was quite quick. I was told 6-8 weeks and then nothing. I'm trying to stay positive and chasing it up without appearing to be pushy is hard. It's comforting to read comments on here and success stories and shared experiences. I don't really have anyone who kind of gets what this is like in my family or  close circle so it's good to get it out somewhere. I have a very supportive husband but I don't always want to burden him as I know it can be hard for him as well.  Make sure you attend your scans and report any changes to your doctor no matter how snalll it makes a difference to the direction of your care . Carry on talking to others about how you feel even by posting on here. Hoping 2021 gets us the answers we need. Good luck xx

Yes, middle of the night googling is absolutely my downfall right now :(  Ite definitely the vascularity element that bothers me and I also keep thinking 3.5cmis small to be causing symptoms, what if it’s come from elsewhere.  

i have a gynae appointment on the 12th Jan and then I guess they will go from there. I do have bupa cover through work but the nhs appointments have come quickly so far. If they dither after this next appointment I may look into using BUPA, even if that means I lose my ovary. I’m very lucky to have one child already. 

Keep positive and thanks so much for your lovely reply x

I'm too sitting frantically worrying it's easy for everyone to say try not to worry  ,my problem started 2019  I went from having 28 day cycle that lasted 3 days never had any problems until then I started having severly heavy bleeding tmi sorry but with clots so big you needed to push out this lasted everyday for 7 months I couldn't go out I had to strip my bedding the doctors did blood tests I was so low on iron they gave me tablets after tablets to try stop it nothing worked It eventually stopped I would then go 3 or 4 months without period to it lasting a month at a time ,I always thought I had ibs so they tested for bowel cancer last year it was clear then 6th September 2020 the bleeding returned I wrnt back to go more bloods more iron and cocktail of medicine, bleeding stopped 16th Dec my scan was 22nd Dec it showed 2, 6cm cysts with thickening I have to get ca125 blood test and hysteroscopy  this has already ruined my life before I even know for sure, 

because It was to painful to be intimate with my husband when I wasn't bleeding and sleeping in separate rooms as I was so embarrassed we broke November last year after 13years of marriage I'm still heartbroken ,I forgot to add I'm only 37 

Hi, how did your appointment go on 12th Jan? I hope you got answers and a date for your appointment? I had my 15ish cm cyst removed 8 weeks and I found out last week that it contained cancerous cells - being told this on my own in the hospital room was heartbreaking, I am only 25 :( I had to have blood tests the same day and CT scan the following day to see if there was any more cancer in my body then I have an appointment on Monday to discuss next steps. They are thinking potentially removing the ovary and some rounds of chemo.

So anybody reading this PLEASE keep pestering the doctors, gynae, go to A+E and refuse to leave.. I don't want this to happen to you too. My CA125 blood test was normal throughout this so please pester them to get you checked.

Sending my love to you all x

I am so sorry to read your news, I can only imagine what you’re going through. To be given that news when you’re alone as well must have been especially difficult. 

I bave been on a bit of a bizarre rollercoaster to be honest. My CA-125 came back at 7. I attended my gynae appointment on the 12th only for the consultant to not be able to see my ultrasound images because the scan had been done in a different hospital trust. He examined me and said he couldn’t feel anything to be concerned about but he rebooked me for another ultrasound. I had that done earlier this week and the sonography said she isn’t concerned by what she’s seen. So I now have two complete differences of opinion. I have a private consultation on Tuesday next week with a gynae oncologist as I want a specialist opinion on the two sets of scans. I’m worried of something being missed :( 

You are definitely right to encourage women to keep pushing, I feel like when you’re younger (I’m 36 so older than you but still young in terms of a ovarian cancer) they just dismiss it as not being anything serious when it very well could be. I will hope you get a treatment plan soon and wish you all the best x

I'm so sorry to hear this ,  I have a complex dermoid cyst with abnormal characteristics and was 7 by 5 by 4 at my last ultrasound 3 months ago, I was put on the urgent surgery list but due to covid haven't heard anything not even a preop....I'm now worried as for the past 3 weeks I have been bloated like 9months pregnant, I'm gaining weight even though I can only eat 500cals a day with small snacks....I don't know wether I should ring doctor and let them know this change given the current situation with covid....or just wait till they contact me about preop.... 

Any advice is greatly appreciated x

Hi Goldie2811... I would definitely recommend ringing back the gynae team at the hospital and asking for some sort of guidance, let them know any pains you are having and just say you are really worried and concerned and hopefully they will be able to make some notes on your account to push forward the operation. I feel like they don't treat us fairly and just think it's just a little cyst on our ovary but they can actually be very painful and uncomfortable and worrying when we aren't sure what is going on!! 

I'm so sorry you're going through this, especially when so young. Hopefully yours is an early stage, CA125 being normal might indicate that it is. I know it's scary. Massive virtual hug. Will be thinking of you.

I imagine you know more now. Hoping you got good news.