MRI-really worried!

Posted , 7 users are following.

Hi Ladies,

I think i just need some reassurance.

I'm 35 years old and have recently plucked up the courage to go the doctors as I have a really swollen stomach- (I look 6 months pregnant!)which has slowly got bigger over the last couple of months. I'm not in any pain apart from my back but I seem to be losing weight everywhere else except my stomach. The Doctor suspected a large Cyst so sent me for blood tests which all came back normal except the CA-125 was rasied-around 90. I went for an Ultrasound and she also did an internal one at the same time but wouldn't tell me anything. I then went to see the Gynaecologist who did another scan and said it looks like a large cyst and has requested more blood tests and an urgent MRI. I'm now really panicking and thinking the worst and scared as I don't have kids yet.

 

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  • Posted

    Hopefully my story well help.

    I'm 39 and have been trying to get pregnant.

    I had my right ovary removed in 2004 because it was engulfed in scar tissue. This was because ten years earlier, I had a cyst with a fertilized egg in it, in the wall of my ovary and it blew up like a grenade. I had two kids after that, though. After my second baby in 2000, I had my tubes tied.

    In 2013 I had major surgery to repair my one remaining fallopian tube so I can get pregnant again. It's been about a year and a half and my belly is still numb in a large area surrounding the incision. This is because they cut through a nerve. I highly doubt it'll ever stop being numb.

    In December of 2014, on ovulation day, I started having excruciatingly sharp pain in the area of my only ovary. The pain shot into the tip of my hip bone and radiated along the top of my pelvic bone, down the back and ended at my tail bone area. It also shot down my thigh on the same side. I went to the ER many times and all they saw were two small ovarian cysts.

    About two months later, a horrible burning pain started and this was in addition to the already severely sharp pain I was experiencing. This burning pain caused the hip bone pain to radiate down the front if my pelvic bone and ended in my pubic bone.

    After being pawned off from Dr to Dr, I finally found the most wonderful OBGYN surgeon. She was worried and did another ultrasound. One of my cysts had all of a sudden gone from being one inch to the size of a lemon. In the ultrasound, it looked like it was a hemorrhagic cysts. But, with the severity of my pain, my surgeon was worried my ovary was possibly twisted and dying. So, she got me into surgery the very next day. This was now three months after the pain started.

    She went in laparoscopically and found a little bit of a lot of things. The cyst was fibrous, caused by endometriosis. My fallopian tube was suck with adhesions to my bowel. There was a bit of endometriosis on the right and left side of my uterus, but luckily not inside it. My bowel had some scarring and a little endometriosis. Along with all that, my one remaining tube that was repaired in 2013, had been blocked by scar tissue.

    My amazing surgeon removed the cyst, scar tissue/adhesions, endometriosis, and unblocked my tube. She cured my pain, she's my hero!

    One reason why I wanted to post all of this is to let you know that it's possible to actually get rid of the pain and save your reproductive organs so you can still get pregnant. If course, there are different circumstances for some, but not for all.

    My surgeon was specially trained to remove ovarian cysts THE CORRECT WAY, with little to no damage to the ovary. Apparently, in medical school they're taught to just rip the cyst from the ovary wall, which will cause damage. My surgeon was trained to gently tease it away from the ovarian wall and stay away from the egg reserve as much as possible. It takes a long time to do such delicate work, but if you still want kids it's definitely worth it!

    One other thing I want to mention is, each month when an egg is developing in the ovary, it develops inside a cyst. But, at that point it's called a follicle. Once you've ovulated, the follicle is then called a cyst. They typically go away on their own. I've had them linger a little, sometimes for months, since I started puberty.

    Anyway, my first period since my surgery started a couple days ago. For the first time, I'm feeling cramps the way normal women do. I am having ovary pain, but that's normal this soon after surgery. Also, my period is heavier than I've ever had, insanely heavy. But, that's normal after this surgery as well.

    I hope this info helps any of you put your mind at ease and educates you a little about what you may be going through. There's hope! I personally recommend the laparoscopic surgery, but only if you find a surgeon who specializes in this sort of thing, one who's had additional training in making sure they're as careful and gentle as humanly possible

    • Posted

      Thank you for your reply.

      Sounds like you've really been through it but thank God you had a brilliant surgeon!

      This reassures me that they may be able to save my reproductive organs as the thought is terrifying me!

       

    • Posted

      I'm so glad I helped, even if just a little.

      My step dad is a surgeon, so I have a little more knowledge than some, about surgeons.

      Just make sure your surgeon is specially trained to "tease" the cyst from your ovary, as opposed to ripping it away. And make sure they will only cauterize any incision in your ovary if absolutely necessary. It would only be necessary if they need it to stop bleeding, but any burning causes scarring. My surgeon had to cut open my ovary, but when she reconnected the incision, it stayed closed on its own except for two tiny points about the size of the point of a needle. Also, if your surgeon hasn't had that specialty training, you really have to find one who has had it. Remember, this is your life and your future children's lives at stake here. Listen to your gut, that little vice in your head. If you feel weird or off about anything, at least consult another specialist and see how you feel after that.

      And, write down every single question you have, no matter how small you feel the question may be. That way you won't forget to ask anything and you won't leave your appointment still wondering anything. Like, ask about your surgeon avoiding as much of your egg reserve at all costs and that sort of thing.

      Tracy

  • Posted

    Hi Sarah

    In a funny way I'm pleased to have found you here.

    I'm also 35 and have just been diagnosed with a large ovarian cyst.

    Went to see the gynae last week, thought it would be a simple case of booking me in for surgery but like you I have also been referred for more blood tests and urgent mri.

    I have 4 kids so am not having the same worry as you with regards to that.

    Since diagnosis 2 weeks ago I am just going through the motions, not eating much, have lost a bit of weight which makes me worry more and am on sleeping tablets now as I was getting about an hour or two a night and I love my sleep!

    Absolutely dreading the mri, I am anxious enough about things as it is, on the other hand just need to find out what this is now.

    Would be nice to keep in touch, let me know how you are getting on, think we are very much in the same boat at the mo

    Clare

    • Posted

      Hi Clare,

      Yes it sounds like we are very much in the same boat!

      Have you got a date for your MRI? Mine is on Saturday and I'm petrified!

      im trying to stay strong but when I see the worry that my family is going through it destroys me.

      Do you have any pain anywhere?

    • Posted

      Hi,

      No date as yet, on one hand would like it this week as this waiting is getting me down, on the other hand would like after the weekend so I get to spend some nice time with the kids before some more stress.

      Haven't really had much pain, the odd twinge here or there but nothing major, which I find strange.

      I first went to gp after I missed a period then the next was really long and really heavy, thought I may be miscarrying at first.

      Oh and please no more googling, I made that mistake, think it has added to my anxiety, wish I had come across this site first.

      Clare

  • Posted

    Dear Clare and Sarah, It is such a scary time - I think the hardest part of this is from finding out your cyst is not so simple to finding out what it actually is. THe past 6 weeks has been the longest of my life. Sarah I am about to have surgery tomorrow and I am sure that the rumour mill has gone into overdrive that I am pregnant! It is so uncomfortable. As far as the CA-125 goes, mine is sloghtly raised but they really only worry when it is in the hundreds and thousands. An ovarian cyst just on its own can raise so can the time you have the test in your cycle. The MRI isn't much fun but it really a great test to have done - you know that you are getting the best treatment! And when they do come to remove the cyst, make it clear that you want to preserve your fertility ... these days they do everything to do that ... unless you are older like I am and then they just take the lot!

    Anyway, I am just coming to the end of the waiting, after 6 weeks tomorrow I am having a hysterectomy with overarys. I have had ultrasounds, an MRI and CT scan and about 5 lots of bloods taken ... i feel so uncomfortable now I am just looking forward to having it out and moving on! My surgeon has sadi that the worst case scenario is a borderline tumour and I am 48, so much older than you! (I am not sure how he can be so sure though!). I am just taking deep breaths and wanting to get tomorrow over with! Try not to worry - it doesnt help and until you know anything it will rob you of living while you wait. Try not to google too much!

     

    • Posted

      Hi Bex,

      Thanks for your reassurance.

      Bless you, I'm sure your surgery tomorrow will go well, it will be such a relief when it's over and you will have no more discomfort. 

      If you don't mind me asking how long had your stomach been swollen for before you went to the Doctor? did you have any other symptoms?

      ive been googling all sorts of things and really scaring myself, I know I shouldn't but I just can't belive this has happened to me-how did it get so out of control and why didn't I get it sorted sooner, instead I just buried my head in the sand and am now terrified.

      How long were you in the MRI scanner for?

      Sorry for all the questions, I'm driving myself crazy! x

       

  • Posted

    MRI is this afternoon, had the phone call yesterday, I am absolutely dreading it. Everything so far has seemed so rushed and I cant help thinking the worst.

    Think tomorrow will be worst when I am waiting for the phone to ring with news.

    Desperately, desperately trying to stay positive but I'm finding everything so difficult at the moment.

    Clare x

    • Posted

      Don't worry it will be fine. I'm so glad you've got an appointment- you are on the way to getting it sorted and you'll be back to normal in no time.

      I know, waiting is the worst part but try and stay positive. I will be going through the same emotions come Saturday.

      Please let me know later how it went and how long you were in the scanner for etc

      Good luck you will be fine x

    • Posted

      Thank you Sarah, will let you know.

      Just be glad when its all over really.

      Clare x

    • Posted

      Wasn't the nicest experience I have to admit, but then I had worked myself up into quite a state before I even went in.

      Had an injection before it started just to stop the bowel moving about etc, put some earphones on me asked if I wanted to listen to the radio, which I did, but could still hear the machine over that. Gave me a panic button, which I didn't need because the radiologist had to come in and calm me down as she could she me shaking from where she was. She calmed me down and the scan took about 20 mins, but it felt more like 20 hours!

      It is worth sticking it out as they will get the best idea of what is going on.

      I'm getting myself all stressed out now waiting for the phone to ring as I think they might be discussing me at mdt meeting today.

      Anyway that was how it was for me, hope you are ok.

      Clare x

    • Posted

      oh bless you, well done!

      I'm getting really nervous about mine now.

      So do you basically take everything off and put their gown on?

      I will be a nervous wreck afterwards too i think, waiting for the call. Just keep thinking positive, it will be fine.

       

    • Posted

      Yea, everything off apart from pants and socks, really wasn't bothered about that at all though!

      Honestly when it was over I couldn't get dressed and out of there quick enough to pick the kids up from school!

    • Posted

      So, I had my MRI on Saturday and like you I was a nervous wreck and seemed to be in there a really long time!

      Now my anxiety is out of control waiting for news.

      Have you heard anything on yours yet Clare?

    • Posted

      Hi Sarah,

      I have follow up appointment with consultant on Thurs, nervous but don't want it to come. Kids are off school so busy keeping them occupied. I guess waiting will be over then as will find out what the next course of action will be.

      Hope you aren't getting too anxious.

      Clare x

    • Posted

      I'm not doing too good, didnt sleep a wink last night. Majorly stressing out.

      Just can't wait another week to find out but at the same time I dont want to find out if that makes any sense.

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