Worried and Lost

Hi everyone, not sure if I am posting to the right place but as the title suggests I am a little lost. My journey began in Oct 17 three months after the birth of my son following IVF. I began experiencing loose stools, going more often and noticed blood. I visited the GP who could not identify any piles or fissures and I had two stool tests that came back with raised calprotectin levels. GP was reluctant to refer me for further investigations at this point so I went private for further advice and had a virtual CT Colonography and CT abdominal and pelvis, which showed nothing apart from a small amount of fluid in pelvis but could not rule out endometriosis to which I was then referred to a gynecologist. I was experiencing right sided pain. Waited to begin medication however a further gynecologist felt that it was not cyclical therefore did not feel it was endo but to try meds. Waited to begin those to discover I had fallen pregnant naturally. I contacted my colorectal surgeon who advised that if I was still continuing to experience rectal bleeding he would consider a flexible sigmoidoscopy in my second trimester to see if it was endo within the bowel. I chased up my appointment in second trimester which had not arrived and was advised that if I was still having trouble to call and arrange a further appointment to which I did as my bleeding was continuing and was troublesome. I had made a few visits to GP but ended up having to make an appointment myself directly with the colorectal consultant. I gave birth in September 18 and was scheduled to have a colonoscopy. The colonoscopy was incomplete as I could not tolerate the pain. Consultant ant dvised that all biopsies he took were normal for as far as he got but that my upper anal canal was inflamed so perhaps it was inflammation causing the bleeding and it was nothing serious to go and enjoy my family and that he would see me in six months time if it remained the same. I lost count of amounts of calls, consultations with the GP I had in October 18 as I was experiencing drenching night sweats. As bloods were ok again it was advised I was being anxious. I then paid for a GP second opinion who wrote to my GP requesting she undertook further tests due to now having right sided pain under rib cage. My GP arranged for a CT scan of pancreas which showed enlarged lymph nodes near to small bowel and mesenteric panniculitis (inflammation in mesentery). Bowel Consultant requested Consultant Radiologist to take a further look at the CT images who felt although enlarged, looked innocent. My private GP then arranged for a referral to endocrinologist to explore my horrendous dripping night sweats. All blood work was normal apart from a little low on iron and a raised Ca125 therefore referred to gynecologist again. Ultrasound normal. This brings me up to May when I had a further appointment with my bowel consultant who said he felt things had been over investigated the CT of pancreas he felt had been an OTT approach, again to go and enjoy my babies I was fit, healthy and it was nothing serious! I explained my anxiety is now through the roof as I needed to know where the blood was coming from. He agreed to take another look and booked a flexible sigmoid for July again reassuring me nothing serious! I told him of low iron and he advised nothing of concern all women of childbearing age with heavy periods are. Even though I told him I had heavy periods and had never been anemic before! Here into June 19 I visited a different GP who didn't load me back to my existing GP as I had low mood and explained why I was feeling the way I was . He thankfully listened! He arranged further bloods to check iron levels which had fallen to 6, iron efficiency anaemia and a fit test which returned positive numerical value 74 (no idea of the meaning of this) and now on an urgent 2 week referral for gastroscopy and colonoscopy!!! All of the symptoms and all of the requests have fallen on deaf ears so far! I'm feeling alone, scared and lost with babies to look after and terrified that this is so far advanced I've no hope, I've had symptoms for nearly two years! Has anyone been in a similar situation and it turning out to be nothing sinister?!? Is there any where I can get support from during this time to manage this rollercoaster? I'm 44 by the way xx

  • Awwww bless you, I'm sure someone will come and give you some reassurance....I myself have been referred for a 2 week wait and to have an endoscopy and colonoscopy due to being anemic too.  The worry and anxiety is unbelievable isn't it.

    I'm 43 and have two children, and its hard to stay positive.  But i know how you feel hun x 

    Sorry I cant give much more x but heres a virtual hug x

  • Thank you for your post. Virtual hug to you too. There is no other feeling like it. I'm trying to stay strong but it's very hard as I've gotten so low with things been dismissed for so long. My youngest baby is only 9 months and it's crippling me. Fingers crossed for us both sending love xx

  • Forgot to ask you. Did you have a positive fit test too? Xxx

     

  • Hi DCD

    Not sure what that is, dont think I did....I had a full blood count which showed elevated white blood cells and anemia, which I've had since I was young.  I did have a CA125 done in January and had to have an urgent ultrasound,  but that came back fine.... 

    Hate worrying so much.... Think I've aged 10 years already with all these health scares! 

  • Snap I can totally understand that completely. Yes same for me with the Ca125 has been raised twice but had normalised. Ultrasound was clear but i've been saying, it's not gynae! I've not had anaemia not even in pregnancy. A fit test is a stool sample test that detects blood and that came back positive for me which I thought it may, as I've been having blood in my stools for over 18 months. I now have major anxiety with trying to get someone to listen to my concerns when I knew something was not right. It's so hard to getting to dates of the test nevermind waiting for results. Worry is just on another level. Wishing you well xx

  • Hi I've been reading your post and wondering how you got on in your recent test. X