Feeling low after diagnosis

Hello :)

I had a laparoscopy on Weds and was diagnosed with extensive endo, chocolate cyst and large fibroids. They separated my bladder and uterus out but were unable to do any more at that time.

I've been in pain and trying to be heard by doctors for 15 years who repeatedly told me it was IBS, depression, anxiety or all in my head. This seems like a ridiculously familiar story.

I'm really struggling to come to terms with it. I've had to give up so many things over the years because of the pain and fatigue. I've felt so much guilt and blamed myself and have had many periods of depression.

I wondered if you had any ideas for how to cope with diagnosis? I was told I'd get given an appointment with my gynaecologist in 6 weeks but this feels like a long time to wait to speak to someone.

Xx

8 Replies

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  • I also had this low feeling a few weeks after my diagnosis. It's an awful feeling and I also felt so lonely.

    I think it's completely normal. It's a huge thing to come to terms with after doubting yourself for so long.

    Perhaps try talk to family and friends about how you're feeling. They may not understand exactly how you feel but it's nice to have a listening ear.

    Everyone on this site is right behind you. :) if you need a chat I'm just a message away.

    The feeling does fade and you will find strength again to deal with this awful battle. Take care xxx

  • Hi Nicole, thanks so much for your kind reply :) I'm very sorry to hear you felt so awful too after your diagnosis. It's a comfort to know it will pass in time though.

    I have been talking to a few friends but I tend to worry about bothering people with my problems. It's an old habit I think because I've alway wondered if I'm just weak and unable to cope with things the way other people can. I think one big positive to come from the diagnosis is that I won't be wondering why I feel bad any more.

    It's a great comfort to know there's a community of people here that are kind and can offer support and advice.

    How are things with you these days? x

  • It's great that you have friends you can talk to. :) completely understand what you mean by feeling like you're bothering them but you'll be surprised by how understanding people can be :)

    You will get through this, just remember how far you've come!

    I'm doing much better. It's still a lot to come to terms with and the pain can be relentless sometimes. It's a lonely battle at times but one step at a time. :)

    Take care lovely xxx

  • Hi again Nicole :) Please message any time you feel lonely and in need of someone to talk to. The pain is very difficult to deal with, isn't it. I'm starting a mindfulness course that's supposed to help people with chronic pain. If it's any good I'll post details on the forum.

    You take care too xx

  • I would absolutely second what nicole has said, after everything you have been through its not surprising you are feeling low. It's horrid to have this diagnosis but at least now you know what is wrong, rather than being fobbed off with lots of other things. I was devastated when I git told, had a couple of weeks of feeling so cross and upset and then started to research as much as possible and started using this site. Those two things gave me back a feeling of control and really helped. I have come to terms with it now, if that makes sense! As for waiting to see consultant, 6 weeks will fly by, but you can call and see if they have any cancellations. My appointment after my diagnostic lap wasn't for 4 months! I couldn't wait that long so paid to see the consultant at his private practice which helped me to get the next step moving along. Take each day at a time and come on here if you need support xxxxxx

  • I can't believe you were told you had to wait 4 months! That's unacceptable. I feel very much like getting things moving by seeing someone privately. Do you think it was worth doing? My friend who has endo too is seeing someone in Guildford who has a good reputation. Is there a list of endo specialists that you know of?

    I'm sorry you felt so low too when you were diagnosed but it's great to hear you have come to terms with it. Hope you're feeling OK today and are having a good weekend :) Thanks so much for replying, your words are very comforting xx

  • For me is was very worth while, as I still wouldn't have had my follow up appointment (it's not until June!) I have now seen him, talked through what they found, had another scan as there a few issues he wanted to check, then got diagnosed with fibroids and adenomyosis as well. I then had to trial a pill which didn't work so am being put on the waiting list for exsercion and hysterectomy. All of this in the time I would have still been waiting to have my follow up! As he works both nhs and privately he has been able to access all my notes and put me on his nhs waiting list. He was t the one who did my lap, I did some searching on line to see who was best for endo at my local hospital, which is an endo centre xxxx

  • I'm so glad that you've moved things along like this! I'm going to take a leaf out of your book and start researching this week. I hope the wait isn't too long until your next surgery :) thanks again for writing back and letting me know more about your story xx

    (also sorry for the slow reply I can't seem to reply on my phone so waiting to get on the computer)

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