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Endometriosis sufferer re:biopsy results on "cancer pathway"

MrsCoffs
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Hi

This is my first post. Im 38 and suffer with endometriosis.  I had a hysterectomy in june to help syptoms but since then have lost three stone and suffered chronic bowell issues.  Ive always had bowel problems but previous to hysterectomy it was put down to endo.  My endo specialist at our last follow up immediately sent me for blood tests and called later that day to inform me she had referred me to her colleague and i was on the "cancer pathway".

At colonoscopy five lolyps were found and removed and other biopsies taken, there didnt seem to be any cause for alarm for medical team, although they were surprised to find polyps as a female at my age.

My dad died of bowel cancer two years ago and had had several colonoscopies to remove polyps previously so i appreciate that famil y history plus endo means that they have to rule cancer out quickly as part of pproce ss of finding out cause of symptoms (chronic dirhhea, sickness, no appetite, exhaustion/fatigue, unintentional weight loss, constant  need to wee, abdominal pain, im on calorie drinks as struggle eating) but due to all these elements "fitting" cancer symptoms, Im eager for results!

They said it would be two weeks for results, it will be two weeks sunday.  Can anyone share their experience as to how long results took and how they were contacted?

my family and i hav e been through so much sincd endometriosis diagnosis fiv e years ago, (ive suffered all my adult life)its affected all my abdominal organs, my bowel has bbeen stuck to my pelvic wall at every surgery and endo removed from external bowel, plus my spin e and ivd undergone nine surgeries in four years to attempt to allieviate symptoms.  Im on opiates to relieve pain and clased disa ldd and was made redundant on health grounds and now medically unfit to work.  After the hysterectomy i thought Id get some relief, but now this!

any advice on what this process, good or bad, is like wou ld be so welcome as at te moment im behaving to my family that all is fine and im not worrying,but really i cant think of anything else but i feel I have to be strong for them.

id like to know if other conditions are testdd for from biopsies, such as, colitis, endo, diviticulities (my mum and gran have this), woul d it be inappropriate to contact consultant to ask given their chronic shedules due to backlogs?

i think im just overwhelmed and any shared experiences, regardless of positive/negative results would be most welcome as I dont want to worry family and as soo n as 'c' word mentioned everyone shuts down and changes topic!

apologies for the ramble, thanks in advance.

  • Hello, and thank you for contacting us.

    I am so sorry to hear about everything you have been through with your endometriosis and now polyps in your bowel and I can understand you wanting to hear from others who may have been through similar situations. What I will say is do remember that anyone who comes forward with their story is going to have an experience that is individual to them and may cause you unnecessary distress.

    My understanding is that things like diverticulitis and colitis (inflammation) can be seen during a colonoscopy, but I am not so sure that endometriosis always is although I think it can be and biopsies would be able to confirm it. 

    Bowel polyps are common, and usually benign (non cancer), but they have to be biopsied and checked thoroughly just in case they have started to change and develop into cancer, but most never do. Here is a link to some information you may have seen already about them.

    The results of this biopsy will hopefully be with you soon, this may be by phone call or a face to face appointment it is difficult to say, as every hospital is managing this sort of thing differently at the moment.

    Endometriosis unfortunately can cause problems within the bowel, and the surgeries that can be used as treatment can have their own side affects. Chronic pain, pain that has been present for a number of years, can be difficult to manage. I see from your email that you are on opiates so I wonder if you are known to a chronic pain team already who may be able to help once you have heard more about the polyps.

    Here is some information on endometriosis which you may have seen before and I expect you know about Endometriosis UK, who provide information and support for those with it. 

    You have had a very emotionally difficult and medically complex few years, and this will of course be taking its toll on you and your family. And when we lose a loved one it is difficult to not think about them when we are unwell ourselves. 

    At the moment you are in the hardest part of all this which is waiting for results.  Until they come through there are many unknowns which unfortunately won't be found online. Trying to keep yourself busy until you hear from the hospital is the only way to help the time go quicker but I know this is far easier said than done.

    Take care, and if you want to talk any of this through further then you may find if helpful to chat with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah.

  • Offline in reply to CRUK Nurse Sarah

    Sarah, thank you so much for your time and a wonderfully supportive post.

    I found it so helpful just airing my worries in a "safe" place.  Im trying my best to follow my own advise and not worry until there is somethijg to worry about!

     

    thank you again for taking the time to resp ond to me.

     

    C

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