Hi! I'm Sharon

Hi, I'm Sharon.


I don't know if I'm in the right place. I have spent the last few months going from GP's having u/s, blood tests, seeing a gynaecologist, having more tests, getting surgery and then more tests again and they still haven't diagnosed me properly yet. The very first u/s revealed a cyst so had another u/s which came back and possible borderline ovarian tumor. Sent to gynaecologist and scheduled surgery but due to extreme adhesions he couldn't access my ovary to remove and test the cyst. If he tried there was high risk of perforation of bowel which meant a colostomy bag. Sent to specialist u/s and still came back saying possible borderline ovarian tumor. Now I have been referred to gynaecologist oncologist. My first ca125 was 6 and next one was 16 so that was normal. I'm so lost and confused and don't know what is going on. Should I be concerned about this, should I not? Am I in the right place? Sorry for the long post.

Comments

  • Hi Sharon and welcome!


    You are in the right place and I hope I don't scare you.  Keep chasing those doctor's for a definite answer.  My diagnosis was borderline and my ca125 didn't get very high so there was not much point in monitoring it.  The frustrating thing about waiting for results that the tests have to go through so many people and it can take a while to get an answer.  If you are feeling stressed and frustrated make sure you let all of that out.  Make sure you have someone there to vent to.  If not just vent here, we all do it!


    Keep us informed.  There is a wealth of knowledge and experience on this forum.


    Nikki

  • Hi Sharon


    Waiting is so hard. We are here to support you any time you need us. Take care.


    Best wishes


    Rachel

  • Thank you ladies! It feels like such a lonely process to go through. So many different reactions from the few people I have told and so hard with having 4 kids aswell. My husband is super supportive so that has been a big help, especially with knowing that having another op puts me at a big risk of a colostomy bag. I still can't deal with the idea of that. My gynaecologist was surprised that I still have this constant back ache. He thought it should have settled down after the first op when he removed the adhesions. It's still there though, all the time, and the aches in my legs! It's like the aches you get when you are getting the flu. Did anyone else get this? Sometimes I feel like I shouldn't been complaining when there are people a lot worse of than myself. Off to the gynaecologist/oncologist on Thursday so hopefully she has some answers for me. Than you again, I really appreciate your replies. Xx

  • Hi Sharon,  How did you go at the oncologist, was he able to answer your question about the aches in your legs?  Whilst I am on chemo, I do get the aches sometimes, usually at night, I think its my body telling me I am tired and go to bed!  Don't worry about complaining, it is good to let it out.  It is a tough journey and even though you have lots of support from your husband, you still have 4 demanding children to manage.  My main side effect from chemo seems to be feeling very flat and tired.  We are all different and seem to be on different chemo regimes.  I would also check with the chemo nurses as they are a fountain of knowledge.  Check out your magnesium levels, as chemo can lower this and a lack of magnesium can be a cause of restless legs.  Take care.  Helen

  • Hi Sharon,


    Have you had any news on the colostomy bag?  I've had a colostomy and iliostomy bag at different times and both were reversed.  They can be very confronting and be a big hit to your self image.  What I did was wear loose tops and dresses or long scarves and threw most of them out when I had the reversal ?.  Make sure you always have a little pouch with a couple of spare bags gloves and wipes in case of an emergency. The stoma nurses are always very supportive and there is always us to talk to.


    Good luck and hopefully you don't need my advice.


    Nikki

  • Thank you so much ladies! It's so hard trying to talk to family and friends about all of this, as much as they try to help, the same answers are everything will be ok. Which is good I like everyone being positive but also frustrating at the same time as it's hard for them to understand how I actually feel.


    The oncologist I saw was so lovely and made me feel so at ease! Oh it was such a relief to have meet her. She is so confident she can do the surgery without any risks of having a colostomy bag, so that is a huge relief. The only thing I forgot to ask about was the aching legs, but Helen you could be right and it's just my body telling me I'm tired.


    Im just waiting for the receptionist to get  back to me with my hospital paper work.


    In the meantime I'm organising a family reunion with a surprise wedding vowel renewal for my husband and I. Something to keep my mind off everything and this whole journey has really reinforced how important friends and family are.


    I hope you are all travelling along ok and again I really really appreciate your replies and advice to me xxoo

  • Hi Sharon,


    I am so pleased to hear that you feel comfortable with your oncologist, they are such an important part of the process.  It is also good news that you will not need a colostomy bag.  Good on you for organising a family reunion, as you say it keeps you busy.  All the best with the surgery.  Keep us informed as to how you are going.  Helen

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