Recurring dermoid cyst, should I push docs?

Posted , 5 users are following.

4 years ago I had a 29cm dermoid cyst removed , it was 16cm when they first found it, grew over 12cm in 6 weeks from finding to removing(taking left ovary n tube).

Now they've found one on my right ovary measuring 26cm already!! I'm tired a lot, my hip and lower back hurts and my thigh keeps going numb. Gp says tiredness is depression n hip is a trapped nerve. But could it be to do with the cyst??

I've been waiting 3 weeks for hospital appointment n now I'm scared of the size it may grow to waiting.

Should I go above my go n call the hospital number on my referral letter or try to wait patiently?

Thank you

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10 Replies

  • Posted

    Katie,

    Not sure why it takes so long to get scheduled for surgery there. If you have a number to call I would, just be firm but respectful.

    The phone number would not be on the letter if you weren't supposed to use it.

    Based on your previous history and the current size of this one it is likely the longer it's there the larger it becomes. Since they don't disappear on their own.

    Everyone I know that has had large cysts suffers from fatigue. I did. It was like being pregnant. The cyst is sapping your energy. The hip pain and numbness could easily be from pressure from the cyst.

    The more I read issues hear all pain GPs dismiss goes away once the cyst is removed.

    Dr. sounds dismissive and not a gynaecologist correct? They should've given a gynae referral also. I hope the surgeon you are being referred to is a gynaecological surgeon? Hopefully LEAD Clinician with good cystology skills to try and preserve your remaining ovary.

    Did you get a script for pain?

    Don't be shy, your health is foremost and you sometimes need to fight to be heard.

    Hope this helps.

    xxx

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    • Posted

      Fatigue is very common. I had a 26cm cyst that was just removed last week, and I had a swollen belly - looking 6 months pregnant. My cyst was also 29cm tall so it was pushing on my diaphram, making it hard to catch my breath sometimes.

      I second the recommendation to be referred to a gyno onoclogist surgeon. That's who did my surgery and I'm so glad. Originally they thought they would need to do laparotomoy, cutting vertically from my bellybutton to my pelvic bone and might have to remove my right ovary and fallopian tube. When I woke up from surgery, I had a measly 5 inch vertical incision on my bikini lin, and they were able to save all my reproductive organs. The surgeron said "it was as close to a keyhole surgery as keyhole surgery as she could have possibly done with it still being called a laptarotomy."

      I'm not sure where you're located but with mine being so big I pushed for a consult asap, recieved one in two days as my referring GP marked my case as "urgent" and then I was booked a surgery 12 days after that and I had my procedure done at a very well respected teaching hospital so I'm sure if my cyst was smaller my surgery wouldn't have been so prompt. I would definitely explore your options with gyno oncologist surgeons and press for some faster deadlines. Good luck!

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    • Posted

      Hi

      You are right its gp, I'm only at referrals stage, this is to the gyne at the main hospital.

      No pain script as to gp its depression lol I'm stuck popping paracetamol.

      Thank you for advice and everything, I'm going to call in the morning and hope to get some news.

      Oh I'm in Leicester, slow place!!

      Katie xx

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    • Posted

      Hi

      Thank you, I'm so tired n feels as you said like I'm pregnant, nice to know I'm not going crazy n lazy in my old age (just turned 30)

      That's what happened with the first for me they were going to cut upwards belly button down, but woke up with 5inch cut on bikini line. But I wasn't lucky the ovary was destroyed for me so full removal. Think what's going to happen this time too sadly.

      Thank you

      Katie xx

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    • Posted

      I'm only 24, so I understand.

      When they opened me up, they found the cyst was not attached to anything. It probably was at some poing, but did not cause any major damage to my ovary, thankfully.

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  • Posted

    I suggest you do what you can to further your appointment. I was polite and waited only to discover the gp had not responded to an email requesting more information on 3rd July. My hospital appointment is now 19th sept. Be polite but firm and assertive.  Good luck. 
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  • Posted

    Katie,

    Hopefully you made contact. Be sure to stress your desire to save your remaining ovary if that is your desire.

    You're only 30 and shouldn't have to deal with the loss of your remaining ovary. Dermoids are often on not consuming the ovary.

    Like justfromerica said hopefully you get a specialist surgeon with skills to disect the cyst from your ovary if necessary. But you must ask/push for the specialist. Even if you're covered by NHS the specialists operate on those patients too, not just private insurance patients.

    Best of luck, update your progress please.

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    • Posted

      Hi

      Called them and went on the online referral list, got 12 October, but turns out the consultant not seen the referral letter yet or the scan!!!!!! So lady I was talking to sent it over to them again n hopes I get a call soon.

      Also told me to call next week again if not heard!!

      Thank you x

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  • Posted

    Katie,

    That's great. The world is moving so fast these days. Seems only persistance gets a response. Keep up the good work.

    Keep us posted. Pulling for you. Hugs to you!!

    Pat

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  • Posted

    Finally getting somewhere, been consultant today and I should have surgery in next 8-10 weeks to remove cyst n hopefully save my ovary!! Just another waiting game
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