Feeling trapped

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I am finding it difficult to get my head round the fact that 7 months ago I didn't know I had cancer and now I don't ! (Hysterectomy removed stage 1b, grade 3 cancer).

The surgery has left me with some tricky bladder issues which my CNS wants me to see the urogynaecologist about and has booked an appointment for next month. However, due to CPTSD, I don't think I can face it, the physical exams set me back emotionally and leave me really dissociative after. The medical induced menopause is also giving me major body aches (and annoying hot flushes). 

I am having regrets about having the hysterectomy as the cancer didn't actually scare me it was the treatment and invasive nature of any gynecology investigations and I feel like I am in a worse position now. I feel guilty writing this as I feel like I should be grateful, but the impact of my psychological health has been really hard and that is too taboo to discuss, I had plenty of offers of support when I got the cancer diagnosis, but it is too socially unacceptable to voice the fact that the issues triggered by this are far more difficult to manage than the cancer. I feel trapped by the fear that the bladder issues will get worse if I don't attend the appointment versus the fear of going. 

  • Hi B74

    Am sorry to hear that you are having some bladder issues post hysterectomy. 

    I understand why you feel that the appointment feels too much to handle. I think it is worth asking further questions to your CNS.

    3 thoughts come to mind-

    1) Have they explained what is likely to happen at the appointment? Is there a possibility that it could be talking about symptoms and making suggestions ( I have ongoing issues following my treatment and these are discussed but do not involve being examined- I am examined for the routine check but not for the ongoing issues) Would the urogynaecologist know of your CPTSD and would this help in any way.

    2) If they do need to do further testing, could this be done under anaesthetic or with some sort of sedation?

    3) I have peripheral neuropathy following my chemo and stomach issues from pelvic radiotherapy, however I was originally told that these could settle with time (they haven't really) Is it worth asking whether any follow up could be done later on - if the bladder issues don't resolve. I was told that they would not normally refer on during the first few months as things can naturally get better with time. I don't know whether this would be the case with your bladder issues but it may be worth asking whether they feel they could improve with time or potentially worsen. 

    Just some thoughts. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi B74 welcome to the forum. I don't know what to say to make things any better for you but I hear you as do others and we are here for you as you need us to be. You may be experiencing what happens for many after treatment finishes and people go back to normal lives but yours is changed forever by your experiences. Don't feel guilty, saying it out loud, that's ok, its what you feel and that's important for others to know.  If you have the Internet you could maybe look up the paper Ive referred to and have a look and see if you can recognise any of whats happening to you in there, as many of us have. Its written by a Psychologist called Dr Peter Harvey and entitled "After the treatment finishes" --"then what! Is it possible that you could also speak with your GP and see if there is any possibility of Counselling for you to enable you to start to move forward. 

    Sending some huge big hugs your way for now. 

    gail

     
    Community Champion Badge

  • Thank you, the paper makes a lot of sense. I am currently paying for counselling as I trust this therapist and she understands my defences and I feel safe(er) with her when I do become dissociative. I think that is one of my biggest difficulties, I was at a good point with regards the CPTSD and then came the gyne appointment and it totally sabotaged my progress (that was last June and I haven't had another one since, as the hysteroscopy and hysterectomy were both under general anaesthetic).

  • Thanks Jane, I hate how foolish this all makes me feel. My CNS is going to talk to the urogynaecologist when he returns from leave about whether he would absolutely have to examine me (her sense is that he would want to and I have said I would rather cancel the appointment rather than feel that he may try to persuade me). I feel it would be too much to ask if they could do an anesthetic in order to examine me (I don't think sedation would help). The CNS spoke to the urology nurse and she has suggested things are likely to get worse if left and they also wonder if the back/hip pain could be related to the bladder issues. 

  • Nothing foolish about it. A good plan for the CNS to talk to the urogynaecologist to ask what the appointment would entail. Once you know, then you can make decisions. I wonder whether a scan might be an option to see what is going on and that would be less invasive as a first option.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • A scan would definitely be far better for me.

  • It was just a thought as a scan might show what is needed without the need for an invasive examination. 

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Let's just hope it's an option Fingers crossed

    Thank you for responding 

  • Hi B74

    I know exactly what you mean about being in a worse position after your op. Unfortunately the cancer ops are life saving but some of the long term effects can be difficult to navigate. My op was different to yours and was for jaw cancer. I have rather a long history. I have had 3 major ops and have just had reconstruction for my upper jaw. I went through operation remorse after my reconstruction and found that my functional ability to eat and drink was much worse than before the op although my looks improved greatly. Nothing as difficult as your issue but it impacts on me socially as I constantly dribble from the side of my mouth and when I drink there is a lot of spillage so drinking when I am out is not an option.I am constantly mopping up and go through loads of tissues.  Like you  I have an option of another operation where they do a lip graft and sew my lips together for up to 4 weeks and I have a naso gastric tube. The thought of it makes me rather panicky as I do a lot of mouth breathing now and the thought of struggling to breath really freaks me out although my consultant says 'you'll be fine' but doesn't realise the anxiety I have. Consequently I am putting the op off at the moment but still have to struggle with the drinking, dribbling issue and will have to for the rest of my life unless I have the op. which may or may not be successful. 

    I do not have an anxiety issue like you and am still really freaked out so it must be extra hard for you. Jane's suggestions are really good ones and I do hope that you can work something out so you can get the treatment you need to try and get on top of the bladder issue. Sometimes the thought of something builds up in our minds and is often worse than the actual reality of things but we just have to get to that point of putting our faith in our consultant's hands and going for it. I hope I will eventually get there and I know you will too.

    Sending hugs

    Lyn

    Sophie66