In pain and feel so ill : Hi everyone, I am... - Endometriosis UK

Endometriosis UK

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In pain and feel so ill


Hi everyone, I am 33 and am due to have my third laparoscopy at the end of the month. The surgeon has done some scans and said everything is stuck together and I may have to have two ops to deal with it. I am in quite a lot of pain most of the time and have recently felt so ill. Today I had to come home early as I just felt terrible. My joints hurt, muscles ache and feel like I am going to faint. I feel so old and like the life has been sucked out of me some days. I find it so hard sometimes as I feel no one really understands. I have an amazing boyfriend who is very supportive but sometimes I feel so alone. Just wondering if other people feel like this physically and mentally. In my head I am just willing myself to get to the surgery date and hope for some respite after it. My last two surgeries involved complications and I am terrified of things going wrong again, but we have tried all other avenues and had no success. This disease is just awful!

2 Replies

Im sorry you feel so low. This is so common with our disease. The feeling like im always complaining and then I don't want to talk about it, but ofcourse no one can help me if I dont reach out. You are not alone. Use the forum to unload all your anxiety,fear,sadness and hope. Its helped me feel not feel so alone. I experienced some very unsympathetic words from my gynecologist this week. Shes working at an endometriosis clinic and yet her empathy was zero. I just reached out to friends and family. I shared on this forum and I started the endo diet again. To the best of my ability.

You are doing great and trust the process. You cant change the future so try to live in the now....and the now....and the now.

When the now sucked, remember in a moment it will change again. Best wishes

LEG84 in reply to TAnd71

Thank you for responding, it's always a relief to know you aren't alone. Some days you think you can do it and others you just feel like you are falling apart, it's so tough. As you say, I also feel like I complain a lot. I now tell my boyfriend the truth about how I am feeling as he doesn't want me covering up how I feel, which is amazing as he doesn't ever get fed with hearing it. He is always there to try and make it easier or give me that little bit of light. But with most people I just paint on a smile and say I'm fine. The hardest thing is when you don't look well and people keep asking whats the matter and you just have to say oh I'm just not feeling great, because even if you did say, most people have never heard of it.

I would try and see another gynaecologist, we go to see these people for help and reassurance. I have been very fortunate with the two gynaes (first referred me to a specialist surgeon) I have seen for this flare up, they are both such wonderful people. They both understand my issues with trust due to the two previous surgeries both resulting in error and have worked with me on that.i feel like they are treating me and. It the disease which is what has happened in the past. Although this time I am private and I guess we get more of their time, which they don't have on the NHS. I also have a fabulous GP, he knows I am seeing the right people to get my endo sorted but he still asks me to go and see him to check on pain levels with pain relief and how I am coping. I feel so lucky in that respect, as I know not everyone is so fortunate.

What are they planning to do for you? I hope you have the sight of some relief soon and you are having a pain free weekend.

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