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My experience of huge complex ovarian cyst

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clareyscarey
clareyscarey

More of a story than a question in case it helps some of you get through the scary waiting time. I know that it is really hard as if you have this problem you will be looking for information and realising at the same time that your situation is only yours. I am telling you so that you can hope for a good outcome rather than expect the worst.

I am 50 years old and was still having regular periods.

I noticed my tummy looking a bit humpy on the right side about 3 months ago. I pushed the lump and the hump moved to the left. Trapped wind moving I thought. However it started getting bigger and when I tapped it sounded like a watery whump. It grew up and over to the middle so I looked pregnant. My insides gurgled, I was constipated and had bad backache every morning. My whole back was sore andI felt a bit out of breath. It got better when I stood up.

I could not get an appointment with my GP. Rang many days but missed the available slots. Called again and said I would have to use A&E, which I would rather not, if I couldn't see someone. Pain!

The GP sent me to A&E gynae assessment. Ultrasound revealed huge complex cyst. The registrar said they suspected cancer. sad

Two days later I saw the gynae oncologist who said the CA125 result was hardly significant bearing in mind the size. It was 70. I was booked in for surgery in 2 Weeks as he wanted to treat it as suspect cancer; respect it. I had a CT scan and overheard he technician saying he had never seen anything like it in his life. sad

I had a total hysterectomy and removal of my appendix.

After surgery the consultant told me he felt the cyst was benign. I know he would have to feel confident to say that and he does expect the pathology to confirm.

It was a mass of mucus filled chambers with very thin walls and he had to scoop it out as it had become a mush. The appendix was also filled with mucous.

So here I am 5 days post op, gone through the fears, made a will and died many times in my head. Now I just need to get the confirmation of pathology and get the HRT. I will make sure I get testosterone as well so that I do not lose all my pubic hair.

YAY! smile

9 likes, 178 replies

178 Replies

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  • clareyscarey
    clareyscarey

    Posted

    I used to get the stabs too. If you have a cyst it will be putting pressure on your bowels. Red blood rather than black or brown blood points to it being benign from constipation. It obviously needs checking because cysts cause mischief. They cause pain, so on reflection I would say you are right to recognise the effects, but if there was a suspicion of anything naughty going on I really think they would do more, more quickly. Get on that phone! X
  • clareyscarey
    clareyscarey

    Posted

    Plus tho may suffer from anxiety buy that does not give your doctor the right to dismiss your symptoms or concerns when you are trying to deal with an actual issue. That is a separate matter for later.

  • Sboverly
    Sboverly

    Posted

    Well, I go today for my ultrasound for my Right ovarian cyst!! I can't wait to know more about what it's doing and this time I'm going to ask my doctor a TON of questions since they have been very vague about telling me anything other than "you have a cyst in your right ovary, they are common and we'll do a follow up ultrasound in 6 weeks to see if its shrinking on it own or even gone".

    Yesterday, I woke up and peed and my urine was really dark. So, I drank water and it cleared, but I would feel like I had to pee a lot!! So, I went to my GP and they did a urine dip, I stopped drinking water for about 2 hrs before drinking some milk and decaf coffee, it felt when I got there like my bladder was full but I could only get enough out to fill the cup half way and it was again pretty dark. They said the dip test looked good and there was nothing in it. Got home and felt like I had to pee like crazy, only a dripping came out! I don't know what this is, but, at least knowing more about this cyst should help!

    My GP office I think is frustrated with me because I call them with all these symptoms but I just really want to just feel like me again!! Wish me luck!! Ill post when I know more, hopefully today and I will get the exact size and type of cyst from them this time. Thanks for the information clareyscarey, I know more of what to ask about now smile

  • BabsNY
    BabsNY

    Posted

    Hello Everyone,

    I have been reading with interest as I am scared to death right now.

    I am in the States, age 53 and been in menopause for almost 2 years. This past week, I have been spotting with period like cramps and left side sharp pain that goes to back.

    Saw GP yesteday who called and got me to GYN same day. I had not been to GYN for 5 years of more (yes, naughty me) but current with GP and with mammos, colonoscopy and such.

    On exam he feels a "cyst" on left ovary and allready said because of age that will likely have to come out. Now scheduled for Pelvic Ultrasound, Saline Infused Sono-hysterogram, and Endometrial Biopsy.

    Funny thing, I am not scared so much about the outcome, but more about how I am going to manage surgery, treatment etc as I am the sole caretaker for my 70 year old husband who has advanced parkinsons disease. He is dependant on me for everything...food, bathing, bathrooming. he is in a wheelchair as well. Have you ever heard the phrase "Ain't nobody got time for this?" On top of all this, we have a friend that moved in with us 7 months ago when she fell on hard times (love this economy) and the arrangement was for her to assist around the house so I can focus on my spouse and have a bit of respite.Well, she had a mastectomy 2 weeks ago and is beginning treatment for advanced breast cancer, and her emotional and physical state is yet more of a drain.

    I have had abdominal surgery in the past, and it was no picnic. split from above navel to pubic bone to remove diseased part of colon from severe diverticulitis. My family thinks I am nuts to be thinking this way but I just cannot fathom how I am going to take care of him. He is my best friend, the very light of my life.

    I am grateful to have found this forum as it seems to be a great place for encouragement and support. My tests and Endometrial biopsy are scheduled for April 28. In the mean time, I am sitting here with cramps, scrambling to find the long unused kotex and trying to Breathe.

  • Sboverly
    Sboverly

    Posted

    Well, after my 3nd ultrasound, I found out it is a complex cyst. I asked more this time and found out that it was originally 4.2cm at the first ultrasound and this time it was 2.6cm. So, they said its good that its shrinking on its own. That is significantly smaller right? So, the GYN just wants to do another follow up ultrasound in 3 months to see where it's at then. This worries me because of it being 3 months away, but, I hear that for my age (29) and the fact that its already shrunk this is completely normal and it probably will go away on its own...thoughts....

  • BabsNY
    BabsNY

    Posted

    Sb: It is my understanding that bad things do not shrink. Great news!
  • clareyscarey
    clareyscarey

    Posted

    That is a very good sign. It is the waiting that is hard. I have to go with the thought that is there were any suspicion of a problem they would do a CA 125 blood test as well. There is no way they would wait if there was any realistic possibility of a problem. I have to conclude that they think it highly unlikely. This is reassuring for you.
  • clareyscarey
    clareyscarey

    Posted

    Dear Babs NY

    How amazing that the GP could tell it is a cyst rather that a recurrence of diverticulitis, just by feeling it from the outside. Is it possible that he or she might have made a mistake? I hope you get scanned before they start all the other procedures. Did you get a CA125 blood test?

    Does your friend have family that she can go to if necessary? You ought to talk it through as the original premise for moving in with you is possibly totally defunct and unsuitable, at this moment. See if she has any suggestions. Having said that, apart from the emotional drain, is she being helpful practically? This might be useful still and if she were to attend external support groups and buddy up with others in a similar situation, she may not need to burden you with the psychological side. You may reserve your home as a place where people are not allowed to talk about illness. If she wants to talk, go out for a coffee with her, pre arranged.

    You still need help in caring for your hubby, but now you need it more because you are not well yourself. Your family may think you are crazy for thinking like that because they want to keep you "up". They may be right, first you don't know what has caused your symptoms yet. Then you don't know what the treatment plan will be. Perhaps you could ask whether they would be willing to discus it with you when you know the facts. See if they can help then too. XX

  • pams5kidds
    pams5kidds clareyscarey

    Posted

    Thank you so much for starting this discussion! It's the first thing of it's kind that I have come across on the web.

    I was just thrust into the same circumstances...exams, ultrasounds & cancer blood tests 2 days ago. CT scheduled for tomorrow & hopefully, good results on it all from my physician the next day.

    Your comment about the "gurgly tummy" caught my attention because it has been a big concern of mine since they did a colon cancer screening too! I have had lots of gurgling as well!

    It is all a bit overwhelming, so finding these posts from you gals out there has been a comfort. smile 

    So, the gurgly tummy... How did they explain that? Did they mention colon cancer to you as well? I'm trying to keep up the positive thinking.

    Also, if anyone would be willing to share, I was wondering about the effects on libido after you recover. What have your physicians recommended? Has this been a difficult issue for anyone so far? I'm grateful for a happy marriage of almost 30 years & I'm just wondering what kind of negative impact might happen from having ALL the parts gone!

    Praying for all to go well here... and for all of you gals out there too!

    Thanks so much for sharing!

    smile pam

     

  • fiona10097
    fiona10097 clareyscarey

    Posted

    Hi Claire

    Thanks so much for your post about your story,I hope youve completely recovered by now.MY own experience is so similar it was very helpful to read yours.I had a CT scan last week which has shown a 16cm complex cyst and some fibroids am now just waiting for an appointment with the gyneacologist to decide on what the next step is.Once again a big thank you for sharing.

  • mavis75447
    mavis75447 clareyscarey

    Posted

    Hi I recently got hold of a copy of my US Pelvic TA and Transvaginal Scan results for my Gynaecologist. As Im under investigation for menstrual problems, I was alarmed when I read that i had a 55x50x50cm cyst (vol 70ccs) in the left ovary and the right ovary appears small with no free fluid. As my next appointment is not till August I was wondering should I be freaking out as this could be urgent or is this appointment time frame normal? My GP has had this info from the end of January 2014 and I had to insist on seeing a gynaecologist due to pain/other symptoms but bloating is dreadful.. I read some of previous posts and some info is already reasurring, helps ease the mind a little. So thanks for the previous posts.
    • clareyscarey
      clareyscarey mavis75447

      Posted

      Dear Mavis

      i just think that that appt is way too slow. Cysts on the ovary of that size should be treated as urgent, 2 week wait. The small ones are usually the most serious, but my huge one WAS a type of cancer. Not ovarian. it migrated from my appendix and I should be OK, at least for a long time. But this wait you have is NOT acceptable. The size of it and the pressure it ill be putting on your bowels as well as anything else....it is unbelievable that your GP has sat on this so long. Don't get all worried, but for functional reasons, I can not see how it is safe to leave you. X

       

    • Kellers
      Kellers clareyscarey

      Posted

      Hi there, been reading your posts and you seem very positive and knowlegable.  Like everyone else, the not knowing is really scary.  I have had intermittent pain in my groin for about a year, not really pain, more of an ache and not there all the time.  Anyway had an ultra sound at the test, doctor report right overy two piont someting and left oveary 5 point something.  GP said test revealed small cysts in right ovary and what has been described as a 'bulky ovary' on left, the one giving my jip so  I have to have a ct scan to find out more.  Bloods tests were normal, no sign of the cancer market but obvioulsy terrified its cancer.  
    • clareyscarey
      clareyscarey Kellers

      Posted

      Dear Kellers

      Don't panic! As said on Dad's Army. The signs look good that you will be fine. I do understand the worry as nobody can be sure without all the evidence. Just as I can not be sure that if I go to town this afternoon, about whether I shall be mugged. I might see somone approaching who looks a bit dodgy (like your ovary) and worry that he might get me. Only to find out another day that he works for charity. I am making light of it I know, it is scary waiting. My motto is only to worry when I need to, as much as possible. The temptation pulls the other way so don't blame yourself for being scared, you can't completely avoid it. Soon you should have your discomfort sorted out, your brain set straight. Don't forget to write back and say how it has all gone will you. X

       

    • Kellers
      Kellers clareyscarey

      Posted

      Thanks.  I know, I think we are all programmed to think the worst aren't we?  The mind is so powerful.  I had some discomfort now and again but as soon as the doctor said there was a problem, i was in permanent pain!  They I thought, no it's a cyst, so pain goes!

      I don't have my scan til 4th June but will share by good/bad news as soon as I know anything.  Thanks for getting back in touch x

       

    • mavis75447
      mavis75447 clareyscarey

      Posted

      Thanks Clare 

       Your not frightening me but I was dumb founded when I read the report. So I will try and get into my pratice has this is there mess, but my life. I was not sure on time scale for these matters. Thanks for the reasurance, I will even insist they email the report to my gyneaocologist. Has he has no medical evidance that a cyst exists so he could not help me in April. Its terrible what we go through but grateful for this forum and ladies like yourself who take time out for others... Thank you all for sharing... 

    • clareyscarey
      clareyscarey mavis75447

      Posted

      It is their mess indeed. I had trouble getting an appointment with my GP even though is was obvious that something was seriously wrong. I threatened to go to A&E so they fitted me in (the cost). The two week wait is for suspect cancer, not saying you have cancer in the sligtest, but they HAVE to rule it out quickly. Rather than rule it in slowly. If you see what I mean. I cannot believe that your results are not with a specialist, how negligent is that. Hugs to you Mavis, get them sorted!
    • mavis75447
      mavis75447 clareyscarey

      Posted

      Dear clare

      So I went to see my GP today and the measurements are right he said I've slipped through the net as I was due a second US Pelvic TA and Transvaginal Scan at the end of April for comparison so decisions could be made... He was not happy with my treatment I could tell as he was making additional notes. I watched him put the request through but all he could do was apologise. He was forwarding all cyst information to my gyneaoclogist and he said I also have endometriosis. So I will await what comes next. If I never came on this site I would not of gone back, I would of gone with the flow. My life time GP has left my practise due to his high demand he was brilliant and not all the others are as sincere and thorough as he was. Thanks again plus I will update with my journey... It's a shame this as happened I pray thats the end of mistakes. Your an angel smile

    • clareyscarey
      clareyscarey mavis75447

      Posted

      The positive is, now that they have messed up, you should get especially attentive treatment. I am so pleased to have helped, it makes the experience I had, meaningful.  Even though I would rather not have had it of course.

      I do worry about the NHS and the stresses on it. Take nothing for granted and if you hit any quiet patches chase things up. I have had to. x

       

    • mavis75447
      mavis75447 clareyscarey

      Posted

      Still waiting for my results from second scan! Pain is really uncomfortable wish I had money would go private..... Feel like I'm being looked after by clowns.  Just hope this cyst ain't growing....
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