Frustrated by system

The post has finally arrived from the hospital, so I thought I'd finally find out properly what the results of my biopsy are.  I'm gutted with the contents, it's just a standard letter To inform me of a new colposcopy appointment which is at the end of May!!!! It has no results and no indication of what the purpose of the appointment is.  I've waited eight long weeks for this and it's driving me up the wall with worry.  

how long is this going to take?

its my own fault I know for not attending my smears for the last few years.  I went for a smear following heavy bleeding during sex and pelvic pain.  The smear in January showed cin2 and I freely bled on contact.  The colposcopy showed extensive lesions.  I had expected to be treated there and then, but they said they didn't do that, so they took a number of biopsies.  After weeks of waiting for a response I began phoning the hospital to get an indication of progress. I know it needs to be removed and I just want it over and done with.  Two weeks ago I got my gp to look up my records, she didn't understand most of it but said that cin2 cin 3 was mentioned and I noticed it read that for gland involvement the response was yes.  Do I really have to wait til the end of May just to go in and be told what they found and then have to wait several more weeks for an appointment?  If they plan to do the treatment at this next colposcopy appointment surely they would inform me so I could be prepared?  It's all just so vague n frustrating.  Has anyone else been through this long drawn out process?  I'm 45 and completed my family.

That's terrible... they should inform you of the outcome of your treatment. My clinic lost my biopsy results a couple of years ago - I had to actually physically go into the colp clinic to find out what was going on as they wouldn't reply to calls etc. They HAVE to write a letter to your GP, so I would contact your GP and chase it up that way.

 

Space bunny thankyou for your reply.  thats a great idea, I hope there is something there this time that they can understand.  When I asked my go to look up my records there was nothing but the biopsy report which they didn't understand.  Do you think I could ask for the report to be printed out?  Do you think the consultant will inform my gp what the planned treatment is? You've given me hope for answers ... So thankyou xxx 

Need for life, you can ask for a copy of the report. I get copies of everything these days as im alwayd parannoid something is being kept from me lol with good causetho-was told my last smear was borderline eith hr hpv 16.  They didnt even mention the 'other high risk hpv strains evident' part!  Try calling the clinic as well and asking if you will receive treatment that day-i expect that you will tho... also you can give them a phone number and ask for a call if there are cancellations although 4 weeks thankfully isnt too long! I wish they would do more to keep us informed of whats going on...it seems like theh think keeping us in the dark is for the best when it just drives us crazy!!

 

Lol thanks for making me laugh ... you reminded me of an old saying ... We are mushrooms, kept in the dark and fed a load of a&/£!!! Lol 

thanks to you ladies I'm determined to get a copy of both my smear results and my biopsy.  I will also take your advice and leave my number in the clinic for a cancelation and to ask if a procedure will be done on the day.  as far as I can see it should be and luckily appears to be a quick simple process of smear colposcopy treat For most people.  That's all I ask. So why do they make it so drawn out, impersonal and cloak n daggers??? I'm sure I'm not the only woman who just want the facts, want to be made aware of the process, and allowed to prepare and educate our selfs to deal with it.  It's hard enough knowing your body is doing things out of our own control, but I'd like to be treated with respect by the people I have no choice but to put all my trust in.  (Rant over)  

I got my biopsy report through yesterday... i felt so much better once I could actually see what the lab had reported and it wasnt just words in my head that id heard on the phone... now if im having a wobbly moment I can look at them and see that its ok!  Im constantly thinking 'what if they missed it etc' but as the report states it was a 'good ectocervical sample confirming the view at colposcopy' im not even sure what it all means but the few words I understand are like gold to me! Haha! I must sound crazy!

Alexs if you sound crazy then everyone on here must be crazy. I totally get the need and reassurance of seeing things in black and white.  I'm hoping I'll be in the same situation soon. Xx

That's so so frustrating need for life!! I can't believe they wouldn't just treat you then and there. So strange how places differ across the country. How do you go about getting lab reports? I didn't get a letter with my results, just a phone call. I thought a letter would follow but it has been over a week now and nothing. I still don't fully understand what's going on in there!

To be honest lemoncat, im still waiting for my letter about my smear results n im already 4 weeks post colp!!! I just went to the clinic and asked for the lab report for those. With the biopsy, i phoned up to get it sent out. I havent received the consultants letter about those either and its been almost 2 weeks since he called with the results but i have the lab report and i can google all the terms until my heart is content!  Ive lost faith in my doctors recently and i just cant help but double check everything!

I agree lemoncat it is strange how much the procedures change depending on where you are.  I would've thought there would be standards and waiting time deadlines for treatment times.  I never even considered my smear test results or know what they even checked for?! It's so sad that you have lost faith in your Drs alexs but I can understand why you feel this way.  I think women have to give up so much control over their own bodies throughout life, n have to hope that our Drs see us as human beings n not just a number.  but what choice do we have but to believe that they are doing their best for us?

 

im asking my gp for a printed copy , not sure if they can or will do it, but nothing ventured nothing gained!  I'll let you know how it goes I suggest you try the same, it'd be interesting to see if we get the same response. 

 

My consultant told me that the doctor cant refuse to print your results for you so hopefully you get that easy enough!

It is sad that ive lost faith... i totally appreciate the fact that we are so lucky to have the nhs system, it is a wonderful system but lately, all of the regular doctors at my surgery have retired and the 'fresh' blood seems to treat us very much as a number...its impossible to get an appointment and they only run an open surgery in the mornings for a max of 60 people-i was queued up outside at 8am last week and as we all filed in, we were given a number and were called by number to the reception.  So yep, i am definitely feeling like a number rather than a human being who sometimes just needs someone to listen and reassure me-at the minute its like im on a conveyor belt and the aim is to get me in and out of the office as quickly as possible lol!

My practice no longer has any open surgery times.  Everything must be done on certain days n times.  To get an appointment for next week I have to ring at eight thirty along with everyone else trying to get through.  We can't even make an appointment at the reception when leaving an appointment.  Results again must be phoned for on Thursday afternoons only ... N so it continues.  So frustrating at times, so I feel your anguish Hun x I'm just going to torture them from here on until I get satisfactory results from them.  We as a nation are useless at complaining and telling when a service is just not good enough! They have unleashed a formidable beast now!!! Lol if you ever need to talk I'm here for you, along with a flock of many more ladies in the same position on here, so don't ever feel alone.

Had no luck phoning the hospital for a cancelation appointment, they arent allowed to keep a list of people waiting for cancelations!!!! They couldn't tell me what the appointment was for, but guessed it would be to discuss my results but maybe the procedure would be done then also.  Guessing and maybes ... Really?  If no one will tell me the results and they won't send them by post, does that mean I should prepare myself for bad news??? 

on a plus note I managed to get an appointment tomorrow Morning with the practice nurse so hopefully will get my printouts then.  

Really?  you would think there would be one set of rules for all the hospitals ahhhh! If i remember correctly, your in N.I. like me? I was referred to Antrim and they took my number and said they would call of there were any cancellations.  Hopefully u get somewhere with the practice nurse... tbh the clinic didnt seem to want to give me the smear printout but by the 3rd visit I think they just wanted me to stop!  We also have the problem with advance appointments-2 weeks in advance here and Im sorry but I cant predict illnesses in advance haha! Im switching practices soon-i moved house and all my friends in this area seem able to get dr appointments within a couple of days which just seems like a total luxury to me!

Yes I'm in the northwest Alexs so attending [name of hospital removed].  The only thing I can put this delay down to is the staff being overworked.  How did you get transferred to Antrim? I'm getting increasingly worried and trying not to take every ache n pain as something sinister, I've started running to the toilet a lot and a constant heavy bloated sensation.  We ask about them tomorrow.  I know it's probably my imagination overreacting.  For a person who only ever saw a Dr when pregnant I've seen more of them in last few months than I have in my lifetime and to be Frank I really don't want to see much more of them.  Trying to stay positive but struggling.  I'm on my own and haven't told my family about this.  I figure there is no point worrying them unnecessarily.  My dads family have all died through cancer related diseases over the last five years.  right no more self pity I'm luckier than most!! Sorry x

It was the lab that referred me to Antrim... I guess thats the closest to me in their eyes although I think belfast is closer...apparently I could have asked my gp to request to change the referral though...i went privately in the end.

The mind is a crazy thing isnt it, ive had every symptom possible over the last 2 months. Ive also been at the doctors more aince the start of the year than id ever been! Ive been on 5 different antibiotics since January-i hadnt had antibiotics since I was about 5 years old! My body has been turning against me!  I probably wouldnt have told many people but I was supposed to leave the country for 6 months and when I didnt leave, people started asking questions!  I think we are all entitled to self pity when it comes to these things! I definitely indulged in quite a few little pity parties with a bottle of wine and lots of chocolate while I was waiting for everything to happen! We are all here for you :-)

Just back from appointment with practice nurse.  No sign of anything on their system from the hospital.  She couldn't find the biopsy report either. I explained what has been happening and she agreed that it wasn't good enough.  She rang the hospital but. Couldn't get a reply either.  as it was her that asked for the urgent referral she is as frustrated as I am and has agreed to phone the hospital to see what's going on and determine the purpose of the next appointment.  She will ring me when she gets any information, this afternoon hopefully. And so the story continues ...