New here !

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  • Hey lovely people, I’m jayde & I hope your all having a beautiful day. Basically a bit about myself I’m a 30 year old mother, don’t eat meat love my rescued animals as much as the kids. In 2019 my little sister killed herself not long after her passing I began getting pains in the right side where it felt as though I was bruised but there was no bruise? Thought it would pass a few weeks later it become that bad it was like a stabbing pain in the area my right ovary would be situated. I began having sciatica pain, pain during sex and extremely tired. I was okay until I collapsed at the stables where my horse is. My partner took me to a&e in the area… they done some examinations told me it was ibs & give me lactolose. Two weeks later the pain was still persistent I began gaining weight. My diet hadn’t changed so there was no explanation I was told it was my IUD & the strings where twisted. The lady cut them off and left the IUD situated in my endometrium. Months passed I was in and out of 7 hospitals where they passed me round, “it’s a haemorragic cyst. They disappear with cycle”. Another told me it was a dermoid inside the right ovary. 

  • They told me the pain I was in couldn’t possibly be coming from the right ovary as the “cyst” wasn’t big enough and it could be my cervix. They sent me for a cervical screening where they told me there was abnormal cells and I went for a colposcopy. Where they informed me they would have to monitor me for the next 5 years 6 monthly as they can become more sinister. So I thought this was the route of the pain pressing on my ovary. 

  • NEW YEAR 2020 I didn’t celebrate I was in hurrendous pain I’d began wetting myself. I looked pregnant dizzy the lot… I went the a&e they admitted me over night told me it was a dermoid and my bowel was compact pushing on it ? But I’d had lactulose, it made no sense.At the hospital they kept me on morphine and fluid drips. I was in 5 days before the took me for surgery. They explained they were removing the right ovary and send it for biopsy as that’s where the cyst was, before surgery I had another scan to show the surgeons what they are contending with. This time they told me it’s a dermoid tumour inside the right ovary. It was nothing to worry about. 

  • I went for surgery 15/01/2020 coming out of surgery the surgeon come to see me and told me the bowel obstructed the view of my ovary but they did remove a small cyst of the left but nothing on the right and my abdomen is full of fluid! An hour after surgery I was discharged home on morphine. No follow up no scans no concern. They sent me home in double the pain and still with a tumour in the right ovary. 

  • a few days later I blacked out from the pain and fell down the stairs they weren’t concerned and sent me home. 

  • Throughout Covid my appointments were continuously cancelled or rescheduled until I was discharged for a “missed app?” I didn’t miss it they cancelled it. At this point I’m on thc oil and zomorph for the pains. I learnt to mask and live with it I didn’t think anyone cared.
  •  until recently I noticed the pains persisting, urinating 30+ times a day, full very fast, headaches, dizzy, nausea, I look around 6 months pregnant, pain in my right thigh, pain in my left shoulder/shoulder blade, constipated again, leaking fluid like mucus Vaginal sorry for info !! My gp rushed me through for a 2 week referral for ovarian cancer that being said the lady who done the scan told me it’s complex& my gp Then referred me. 

  • They didn’t get me in for an appointment I had a member  of ovarian gyne ring me and was extremely condescending, told me I was being stupid ? Told me it’s a dermoid and I wouldn’t be getting this pain of the dermoid I said well what can I be she said your IUD ? I said how it’s been in since 2017 and never given me any issues. She told me CA125 isn’t an accurate form Of marker as it can raise with a cold and told stop being dramatic? My appetite has completely gone I’m sleeping around 15 hours a day I feel hungover when I wake and i have seen hundreds of misdiagnosis stories similar to what I’m going to the pain hasn’t decreased I constantly feel pressure and stabbing in it right side… 

is it weird that in my head I know it’s not right and she’s not right ? She said a lot more unprofessional things I’ve complained about … this is my life & I can’t afford to be diagnosed too late when I’ve been pushing them to listen… 

help ? 

anyone else had the same I’m extremely unwell right now… 

thank you xxx

  • Hi and a very warm welcome to the online community

    I'm sorry to read all that you've been through and are still going through.

    I had a different type of cancer to you so don't know what the normal protocol is with ovarian cancer. Do you have a CNS you can talk to if you're having problems with your consultant?

    You could post your questions in the ask a nurse section of the community if you don't get any replies here. Clicking on my link will take you there.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Aw thank you for your kind message I’m at clatterbridge tomorrow so I’ll have answers I’m positive ? Xxx

  • That's good to hear Slight smile

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"