Awaiting Diagnosis - Feeling helpless and scared

Hello Mummyoftwo

I am so sorry that you are being pushed from pillar to post by various doctors, this just isn't good enough when none of them have given you a definitive diagnosis of exactly what is going on.  It is quite probable that it is nothing to be alarmed about, nevertheless it should be checked out properly.

In your shoes I would go back to your GP and ask for an urgent referral for either a colonoscopy or a CT scan.  Tell him/her your fears and don't be put off.  And I must stress again, it doesn't mean that you have anal cancer, just that you should be on the fast pathway to be absolutely sure.  You certainly shouldn't have to be paying for all of these checks either.

Can you book your appointment online?  Otherwise ring very first thing tomorrow.  

Please come back and let us know how you get on.

Irene xx

Hi Mummyoftwo ,

Welcome to the Macmillan online community.

As Irene has mentioned you should go back to your GP & personally I would ask for a referral to the lower colon team, these are the Dr’s that biopsied & subsequently diagnosed me, they can do a flexible sigmoidoscopy, colonoscopy, scans etc., if they feel there’s a need. Whatever this is the way you’ve described it it must be extremely uncomfortable & you need something doing regardless so I would make sure they know that being dismissive, as the GP’s have been so far, absolutely isn’t an option!! 

Let us know how you get on. 

Nicola 

Oh no no no no no.

They don't get to push you off like that. 

I had TWO YEARS of deferred diagnosis and treatment (yes, partly due to the pandemic but not wholly) and I plead with you to march right back to your GP and demand a gastroenterologist referral. Probably NOT anal cancer but it is sure as hell something and to send you away to try and push the lumps back into your own backside and carry on is unacceptable. 

I too accepted all those 'maybe's and kept soldiering on while things got worse and worse.

Bullshit. It sucks that you have to advocate for yourself to this degree, but for your sake, and the sake of your littles and other loved ones, go pound your fist (figuratively) on the desk and don't let them fob you off!

Please update us as to how you're getting on. Wish I were there to storm the battlements with you.

Hugs

Suz

Hi Suz,

Thank you for taking the time to respond. I’m sorry you got the run around too and I hope you got all the necessary treatment for your diagnosis!

It really does suck that we have to advocate ourselves to this degree. The doctors only seem to be interested in slapping a bandaid on the surface, they don’t seem to be interested in finding the root cause of the problem or pain. 

I have been feeling miserable trying to push the weird lumps back in everyday.

I will call the surgery tomorrow and see if I can get another appointment.

Hugs x

Hi Irene and Nicola,

Thank you for taking the time to respond.

I will try the surgery again tomorrow, I just feel a sense of despair whenever I reach out for help as I’m made to feel like I’m wasting their time. 

I would have quietly accepted it had the diagnosis from the different doctors been the same, but none of them sound sure but want to just treat it as haemorrhoids. They refused to send me for any test and said I’m too young for it to be anything sinister (I’m 35).

I will try and hold my ground tomorrow.  

Wish me luck x

Hi again Mummyoftwo ,

Yes stand your ground & insist on a referral to your local lower colon team! Do not let the GP use the reason of ‘being too young’ as an excuse to not investigate further. Explain that this is causing you great distress both physically & mentally & the Dr’s you’ve seen previously have all given a different diagnosis & you’re not satisfied with that. Hopefully this isn’t anything sinister but you DO need it investigating further. 

Good luck for today’s appointment & let us know how you get on. 

Nicola 

Hello Mummyoftwo

I am hoping by now you have an appointment to see your GP again.  Do you have anyone who can go with you and help put forward your case for urgent referral?  I am not suggesting that you can't speak for yourself but sometimes if you are the person in the midst of it all it can become too emotive and difficult to make your case especially if the doctor is being dismissive.  Even if it is 'just haemorrhoids' they sound bad enough to warrant more medical intervention than a GP can provide.  I am so fired up on your behalf!

Wishing you all the luck in the world, we are all waiting to hear how you get on.

Irene xx

Hi Mummyoftwo this sounds similar to my mis-diagnosis of hemorrhoids.  Initially had external lumps appear, one a cone shaped bulge that protruded from rectum over perineum (pointing up to vagina area) and there was a lump (marble sized) under skin on perineum.  The lump on perineum was not initially seen by GP due to the way they inspect an individual for hemorrhoids from back passage & on side - this is something I've bought up with GPs and surgeons since as they also need to examine someone from the front IMO! The cone shaped lump was covering the marble sized lump.

Eventually the pain got worse over a period of couple of months, and by 5 months I was in excruciating constant pain.  I also had radiating nerve pain start protruding down my inner left thigh - I kept saying it's stemming from the external lumps but I kept being told it was a separate sciatic issue ( I knew it wasn't).  I was sent for a fast track 2 -week wait clinic and a sigmoidoscopy but it all landed at Christmas and the 2 week wait turned into 6-7 weeks.  I was in agony by this time, not eating due to pain on bowel movement, unable to walk properly and hardly sleeping, plus there was no way any camera could have got passed me unless I was to be knocked out.  So out of utter desperation in early Jan I had to see a private specialist who sent me immediately for surgery via NHS. On surgery an internal mass was found - the external lumps were 'tip of the iceberg' to what was going on internally as the surgeon put it.  I knew something else was going on but of course did not expect it to be cancer! It has been pinching on my sphincter so that's what was causing the nerve pain.

I am saying this not to scare you but to encourage you not to have any doctors waste your time any more than necessary.  I was too sore to have a sigmoidoscopy and couldn't wait that long but from all I know it is likely this is what you'd need to investigate your matter further.  The external lumps never went away with anything I tried.  I attempted to push back in once in bath and I was in too much pain, I realised from that point it was unlikely to be prolapsed hemorrhoid. I even thought it was a thrombosed hemorrhoid due to the pain I was in. 

A few months prior to surgery a GP put me off going for surgery as she stated "ooh you want to avoid surgery, it's the very last resort, believe me I've seen it" she basically put fear into me. I spent a lot of money on many different hemorrhoid treatments, natural and over the counter.  Of course none of it worked, but i thought I had to somehow fix it all. Hands down I would have had that surgery at the very beginning - it was nothing in comparison to the pain I experienced which only got worse over 5.5 months.

Apparently a hemorrhoid, even a thrombosed one, with proper treatment should clear in approx 6-8 weeks (another GP told me this which left me in shock as if only I'd spoken with him first I may have had action taken sooner).  Since I have felt a hemorrhoid by rectum and the difference is obvious!   So yes as others have stated, please go back to your GP and ask to be referred to the colon team / colorectal specialists asap for further investigations.  If go privately, seek an initial consultation with a specialist and they will advise on the scans/investigations needed.

Sorry for my waffle ... guess it still annoys me how it all panned out, of course in hindsight we see things differently also.  Please do keep us updated, wishing you all the very best and keeping fingers crossed that it all gets resolved soon Xx 

Em44, a really informative reply for Mummyoftwo and any other future readers whose fears are dismissed by their doctor.  I'm not surprised you are still annoyed, it sounds as if this should be escalated (once you are recovered from treatment) so that your concise account filters through to all those who let you down and most importantly they learn from it.

Irene xx

Em, my tale of woe is long and miserable, but yours is just as bad if not worse! We spend far too much time trying to be easy and kind and not a bother. In retrospect, it's so ridiculous.

I'm so glad you put this out there for others to read and hopefully avoid the prolonged fear and misery that we did.

Hugs

Suz