Fed up of post trach pains

Hi

Sorry I think I’ve posted about this before but my pelvic/abdominal pains after my surgery over a year ago have recently become more frequent including heavy feeling, burning in my thighs and sharp stabbing pains in what feels like my hip bones. I have asked my consultant about this all year and last time in December I just said what are the symptoms of recurrence and she said pain.. Anyway I have my next mri on wednesday but feel like I needed a rant as I think it’s unfair having been left with this for a year with no answers or suggestions of what it could be until I have to be more forward in asking and then I get an answer I guess I didn’t want to hear. 

I know there will be other people who have had more difficult treatments and suffer a lot worse than me so I hope I don’t come across as inconsiderate it’s just getting me down x 

Hi Misstell, 

Just saw this one now. 

Was your MRI today? I hope it went well for you and that you get the results and some peace of mind from it. 

Rant away, I think if you can't rant here then where can you ;)

I am sorry to hear that you have unexplained pain and that you aren't getting much in the way of answers. I explained to someone that after cancer you feel like you've sacrificed more than your physical health. A piece of your mental health and your peace of mind goes with it too and though it's more than likely the pains are nothing to do with cancer but are a post surgery impact that still doesn't help. It's horrid to be in any kind of physical pain and its even more horrid that your mind jumps straight from 'it's nothing' to 'the cancer has returned.' I think that's normal and will never go away but it doesn't make it any less sh*t or make you feel like crying any less. 

I really hope your MRI went well. I'm finding hospitals incredibly frustrating in terms of post cancer care and so its a shame that you've had to press for answers. My fingers and toes are crossed for you! Let me know how it goes. 

Gerry

 

atyourcervixuk.wordpress.com/

 

Hi Gerry

Thank you so much for your reply. The MRI went fine except for nearly fainting when they put the needle in to insert the canula. 

At the end when I was finished the lady asked when I was seeing my consultant next so I explained that my last letter said 4 months as long as my check up with her and the mri were fine. It made me so paranoid afterwards that she was asking cos she saw something suspicious on the screen! 

Yes, I have to agree after care has been pretty rubbish. I just don’t know what’s causing these pains and my gp prescribed me a stronger painkiller but I actually wnat to get to the bottom of this not just be fobbed off with pills. 

Yes I really hope that the results are quick. I am going for a short holiday in a few weeks so I really hope that they don’t call me then :( I’m just so worried. 

X

 

Her asking when you were next seeing your consultant was probably just a random question that she asks, probably to gauge just that - when you're next seeing them! If there was anything suspicious she wouldn't have said either way because the first thing they would do is send it to your consultant and your consultant would pick it up as a matter of priority, they definitely wouldn't be waiting until your next appointment. But if I'm learning anything I'm learning how the post cancer mind works as mine goes to those horrible places too and it's hard, if not impossible, to switch off. 

I've found that trachelectomy's are quite frustrating things. Though they are offered as a fertility preserving procedure there are times when I get so angry at my own body that I tell my partner I wish they'd taken the entire thing out after all.

I think there is a lack of post trachelectomy studies as it is still relatively new in terms of a medical practice and I think the result is that when 'random oddities' occur for women they don't seem to have much in the way of an explanation. I've heard 'it's hormones' used a few times from doctors etc. (not just to me but it seems to other women) and I think 'no it bloody well isn't' and I think it's because a) we're women and so its the damned default even after a reproductive cancer and b) most medical professionals have never even HEARD of a trachelectomy let alone can advise on how to cope with any after effects. 

As they are keeping regular checks on you, you would know the minute they have found something. The odds of it being a recurrence are small and so the pain you are feeling probably wouldn't be that. Sadly, its probably something they can't explain in terms of how your body is responding to the removal of your cervix. But that doesn't help because that sucks. It's shit. 

I'm really sorry that you still don't have an explanation and I can tell you not to worry but that would be the most hypocritical thing I could do because I get one twinge in my pelvis and I'm all aboard the drama express and then am literally seconds away from having a full on anxiety attack. Feel free to vent and rant away to me or to the general forum because sometimes you just need to get it off your chest and be pissed off at it all. 

I hope you can enjoy your holiday. I don't know if this will help but I try a technique where if I know I can't not think about it but don't want it to overtake my life especially if I'm trying to enjoy something - I either vent it solidly to my partner or someone and say 'I want my 45 minutes to rant this out' and then visualise 'locking it up' in a box until tomorrow or I try and write it down on paper to express how I feel and then put it under my pillow. I felt a bit out of sorts with worry over Christmas and so I tried this and when thoughts crept back in I kept saying to myself, 'your appointment isn't until tomorrow.' It worked to some degree but it required a lot of effort and I need to practice it more! It may not help you but I thought I would put it out there! 

Hi

Sorry I took so long to reply, I broke my wrist and sprained the other!

Yes, maybe you are right, I called the secretary the day after the scan 18 Jan and she said she had the results and would pass on to the consultant who would be in the next day. I still haven't heard and I haven't even heard about my normal check up on 1 December yet!!

I agree, nobody has ever heard of them which is frustrating..

Yes rants definitely help! I also went to a group anti anxiety thing nothing to do with cc but bought a useful book afterwards.

Hope you are well x