What do I do next? :(

Posted , 6 users are following.

Hi All,

I'm a little bit lost and feeling defeated with my health issues and don't know what to do. I have been experiencing the following symptoms for 6 weeks now; a permanently swollen abdomen (10 inches), shooting pains and a constant dull ache in lower abdomen, fever and regular bouts of vomiting, a feeling of fullness after eating/drinking small bits, erratic periods and excessive discharge, aching thighs/legs and struggling to pass water.

I saw my GP and he arranged for urine, blood tests and an ultrasound of the upper abdomen. All come back clear. The pain became much worse and more localised to the lower abdomen area so I was sent to A&E. After various tests they decided I probably had ovarian cysts so organised a second ultrasound of the pelvic area and I was prescribed strong painkillers for the meantime. I have just returned from having my pelvic scan this morning and the doctor who performed the scan told me there are no ovarian cysts but the full results will be sent to my gp in 5 days.

Now I'm just totally confused. I've done a lot of reading up about ovarian cysts and feel like my symptoms are text book for someone with an ovarian cyst. I was absolutely sure that cysts were causing the problem and I had kind of put my mind at ease thinking it was because I had researched all treatment/outcomes and prepared myself for the same. Now I just feel like I'm back to square one. I have no idea what is wrong. It is effecting my life severely and I have barely left the house (except for doctors appointments) for 6 weeks.

I suppose my question is do any of you have any experience of cysts being missed on the ultrasound scan? Or has anyone ever had ovarian cyst symptoms but it turned out to be something else? I just know my GP will say "all clear, nothing else we can do", but I'm not willing to accept that. So I would like to know what next steps I can suggest.

Any help would be much appreciated.

Thank you

0 likes, 18 replies

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18 Replies

  • Posted

    Good Morning. I am sorry to hear that you are having all these "worrisome" symptoms and I want to encourage you to request, and even demand, a referral from your GP. You need to see a gynecologist, and you need an MRI or CT scan. My ovarian tumors did show up on the ultrasound and I went for further testing. Your GP should refer you to a specialist immediately so that you can be reassured that the ultrasound was right, or so you can plan for treatment further down the road. I had all those symptoms and it was serious. I have spent this entire summer in a vortex of medical appointments, hospitalization and treatments. I hope that you are well and that it's nothing serious along the lines of what you are thinking it is... but you definitely need the advice and opinion of a specialist.

     

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  • Posted

    Hi Patch8,

    Your symptoms are almost identical to mine except for the vomiting.

    Im awaiting a scan to rule out ovarian cysts. My GP thinks i may have either cysts or endometriosis. If the scan comes back negative for cysts i have to see a gynaecologist regarding endometriosis as this doesn't show on ultrasound, it can only be diagnosed via laparoscopy.

    my GP said both cysts and endo can happen at anytime but its more comman in ladies over 25.

    I hope you get some answers and a diagnosis asap.

    Regards

    Martina

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  • Posted

    I had the same symtoms like you. And thankfully it is not cyst. More test for you so that you are sure for everything and all your doubt must to answer.
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  • Posted

    I haven't had that happen but I'll tell you my little story. I have been in my bed for a couple weeks to because I have pain in my lower abdominal area. Emergency room visit said I had two hemmoragic (sorry i think that is how you spell it) ovarian cyst. I was freaking out because I could not believe that cyst could cause excruciating pain. After I left from the ER I went to get a pap smear. I had bacterial vaginosis also and did not know. I'm still in bed resting getting better for sure. Been eating really healthy something I rarely do. I myself going to go to 100 (OK I'm exaggerating) doctors if I have to until I find a doctor who can do something to take the pain and not masking it with pain killers. Is your body and if it hurts your body is telling you something. DONT LET ANY DOCTOR BLOW YOU OFF AND GET YOU DISCOURAGED find out what it is.
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  • Posted

    My cysts were not easily seen via ultrasound due to fluid from the cyst rupturing and floating around inside my tummy.  The only thing that confirmed them was a CAT scan.  Try to get one of those booked.  It was very easy and confirmed my cysts 100%
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    • Posted

      I'm sorry to keep chiming in, but this conversation is obviously very interested to me. May I ask how you got rid of them? Surgery? Time? Medicine? Natural supplements?
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    • Posted

      No problem at all! 

      Mid-July of this year: got a sharp pain at night following dinner. I threw up very violently about an hour after the pain started so my family and I assumed it was food poisoning.  The pain persisted the rest of the night and the following day.  The following night I went to Emergency at the hospital.  After 2 days of scans (ruling out food poisoning and what I thought it was next - an appendix attack) They booked me in for an ultrasound and CT scan.  Due to the fluid being loose in my abdomen they could not see 100% clearly but they confirmed what they suspected with the scan.  I had two dermoid ovarian cysts, which had ruptured causing the pain.

      My surgery was booked three weeks later (August 7th).  During those three weeks I was feeling pretty much myself minus some discomfort here or there.

      August 7th rolls around - I am scared out of my mind!  I had never been to the hospital for ANYTHING since birth!  My doctor and the hospital I am a patient at is by far the best in the country so that reassured me as much as possible.

      Following 5 hours of surgery - they somehow removed both of my cysts laprascopically.  I was told the chance of this was low (20%) due to the size of my cysts.  One was the size of a baseball and the other was the size of a basketball.  My doctor is truly amazing to have been able to remove something that size laprascopically.  The largest scar I have is about 1.5 inches.  She also saved half of my left ovary (which both cysts were on) and confirmed my right ovary is completely healthy and normal.  I have not had children yet so I was concerned this would cause problems in the future which she assured me wouldn't be the case.

      I had a few complications following surgery but overall I feel great and am off all medication.  I would highly recommend getting them removed.  As scary as it seems it is SO worth it.

      I hope this helps.  Let me know if you have any other questions.

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    • Posted

      Thank you so much for sharing your story RCS88. Im glad that everything turned out to be good at the end. And your doctor truly is AMAZING, he managed to still save half and have minimal scaring, WOW. Hope we can have the great outcome in the end just like you. And that is so good your other ovary is healthy so you can have your baby/babies when your ready. smile
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    • Posted

      It's truly incredible what she did.  I'm very blessed to have found her (in emergency, by accident!)

      Good luck to you.  We are all in the same boat and can be each other support system xoxo

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  • Posted

    Thank you all so much for your replies. It has made me feel much more positive to just have someone listen and to talk to.

    Karen, I'm sorry to hear about your horrendous summer and I hope you're feeling much better now. I was hoping someone would reply with an answer like yours as I just wanted to know that I wasn't being unreasonable to demand further scans (CT or MRI) before I call my gp as I know it won't be an easy battle. As you say, what I want is either confirmation and reassurance that there are no issues or to get to the bottom of the problem and sort out a plan of treatment. I don't want to be told to just 'wait and see' (again).

    Martina, I hope your scan comes quickly and gives you the answers you need. I am 27 and have done some research on endo, so far I haven't spoken to any nurse/gp who has been very helpful in explaining how they would rule it out so thank you for sharing your info with me. It is definitely another thing I will be mentioning to my gp along with the CT/MRI suggestions. I hope you get some answers asap too!

    Dayanara, sorry to hear about the awful time you're having. I have definitely experienced the feeling of doctors dealing with things with a "wait and see" attitude, in the hopes that the problem will possibly disappear of its own accord. I completely agree that you know your own body better than anyone, it is sometimes just difficult to have the courage to persuade others that you need treatment. I'm glad to read you're resting and getting better but knowing an end is insight is definitely much more helpful isn't it. I hope you come across a decent doctor who can help with the pain and your recovery. Good luck!

    Just to add, if anyone else experiences vomiting I have found ginger biscuits to be extremely helpful. Some days they are the only thing that I can stomach and I will go whole days just nibbling on a biscuit. For the pain I'm taking Zapain which is a strong codeine. I'm not a fan of meds but they've proven invaluable in helping me sleep at night as the pain would frequently wake me. Also, rooibos tea seems to help after I've eaten anything to take that initial gassy stinging pain away.

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  • Posted

    RCS88, I can't believe your cysts were so big and still couldn't be seen by the ultrasound that is crazy! For my second scan, the Dr couldn't see properly and told me I didn't have a full bladder - I did, I was busting for the toilet! So I was told to wait in the waiting room and drink more water. I did, very uncomfortably, but when he scanned again he said it still want very clear but he could do it. It was obviously clear enough for him to rule out cysts but I wondered why this happened despite me having a VERY full bladder both times.

    I'll be sure to mention your story when I speak with my GP, I'm building up quite the collection now! I may need a double appointment 😀

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    • Posted

      I made sure to jot down as many questions as possible.  They also tried performing an MRI but I had a panick attack (first time for that too).

      The CT scan will do the trick and it only takes a minute.  It should be a no brainer for them to see what's going on in there.

      Good luck with everything!

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  • Posted

    Hi, just wanted to update in case anyone is experiencing the same issues and wondered what is happening.

    I saw my GP today after having a phone consultation where I asked for a CT scan. He suggested I come in for another examination, so I did. He asked the same questions he has asked every time I've been in, my answers remained the same. I think he could tell I was extremely fed up! He then examined me and found that the pain was more localised to my lower right quadrant, whereas previous, it had been just the left and then both left and right. So he suggested grumbling appendicitis. I now have a referral to be admitted to the surgical team tomorrow, they will 'do a few tests'.

    I don't know know what to think  anymore. My GP said the wait for a CT scan would be long and that my symptoms required treatment now. But if it does turn out to be ovarian cysts, aren't we just prolonging it anyway by not referring for a scan and investigating a different issue? 

    I've now spent 7 weeks house & bed bound, I have missed my university graduation and the start of my postgraduate course. I feel like I look like another person, my skin is grey, hair is thin & dry and my clothes don't fit because of my swollen stomach. I think the worst part though is the feeling that you have to convince people (medical professionals & university, not family/friends) that you're unwell when you really don't want to be but it is so difficult to explain because there is no definitive answer as to what the cause is or what the treatment /recovery time is. 

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    • Posted

      I would see another doctor ASAP.  It seems like he is not listening to you at all.  Can you get a second opinion?  Don't rest until you are satisfied with your care!!
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  • Posted

    Hi,

    Another update!

    I spoke to another doctor who told me I couldn't have a CT scan because of the exposure to radiation. He said it wouldn't be an option for a female of my age (27) unless it was extremely necessary. I was then sent to the hospital (3rd time) to the surgical team as he seconded the first dr's concerns of appendicitis.

    I was extremely reluctant to go as I knew this wasn't the case but went anyway and was told within minutes of arriving that I did not have appendicitis. They did bloods, urine sample and examination to confirm this (3rd time these things have been done). I was then told I'd have to stay in overnight to have an ultrasound in the morning. I said I'd already had 2 that come back clear, if this comes back the same what next and they said they didn't know.

    I was extremely unwilling to spend the night to just end up having a 3rd clear scan the next day, the whole point of being there was to rule out appendicitis. I was on a busy ward with very sick people and got the impression from most staff that I shouldn't be there but they couldn't exactly say that so I discharged myself.

    I know this will probably go against me when I call my gp again tomorrow as it'll look like I'm refusing their advice but as I see it, I've done everything they've asked and it has got me nowhere. I understand the need to rule things out but how many things can be ruled out before we get to an actual diagnosis? And is this even possible now without a ct scan?

    I have no idea what to suggest next, I feel like this may never end sad

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    • Posted

      I'm also 27 and I had a scan no problem.  This is where they confirmed my cysts!  I would insist on having one.  It will make their job much easier.

      Good luck xoxo

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    • Posted

      Hi RCS,

      Thank you for replying again, I appreciate your help!

      Two gp's seemed reluctant (and one outright refused) due to the radiation and suggested they'd only be used in young females as an absolute necessity. I've since found quite a few females our age and younger who've had them as part of routine checks so I really am just at the end of my tether. I don't feel like I can force them to refer me but I also don't know what else to suggest.

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    • Posted

      Would it be possible to look around for a doctor who will let you have one?  It's unbelieveable that they would rule it out when it can find out what's wrong in a matter of minutes.  You should not have to beg to be taken care of properly!

      I hope you are able to have one soon.  It gave my doctors the confirmation they needed when discovering my cysts.

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