Pain is so familiar: Hello, Does anybody... - Endometriosis UK

Endometriosis UK

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Pain is so familiar

16 Replies

Hello,

Does anybody find that their pain has become such a familiar feeling within their body because I do. Saying this however, I still know when I am in pain and when I am not. It is just that every day when I get the pain, my heart breaks as I realise again that despite all the operations I have endured, there is something not right in my pelvis.

For me, my journey has been one of being told I have endometriosis and then being told countless times after that I don't have the condition but I should seek the opinion of a psychiatrist for my unexplained chronic pelvic pain. How many of us have been there?!

I am not cross with my pain because to do so would be cross with me.

I am just cross and filled with a sense of abandonment out there by so many healthcare professionals that make us feel that the pain is not real.

Thanks for reading

16 Replies
claire83 profile image
claire83

Hi. I know what you mean about the pain - for me its just there all the time, some days not as bad as others but always there. I almost can't remember what its like to not be in pain. I've got my first laparoscopy on thursday and I've just got everything crossed that they do find something because if not am I just Imagining it (although I'm certain I'm not). Nice to see people on the forum have similar feelings and questions though... we're not on our own xx

in reply to claire83

Thanks for your reply and yes it is re-assuring to realise you are not alone. I hope everything goes well for you and whatever the outcome, do not give up. x :-)

Alixxx11 profile image
Alixxx11

I undertsand when you say it's familiar, it's like when I fist had these pains they took my breath away and were so powerful. Now I don't think they have changed I just think I can handle them now, I know when they are coming and have learnt to hide the pain from my face and just get on with it :/

xxx

in reply to Alixxx11

Thanks for making me feel I am not alone. Likewise, I feel my pain has never changed from the first day I felt something was wrong. To be honest, despite being in pain all day, I feel a stronger person as I know I can cope. You kind of have to get on with life, don't you. I feel my pain makes me more determined and I continue to hold onto hope. x :-)

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Kjp1 profile image
Kjp1

Yes understand what it saying. I had a flare up for last three months and the last day or so I've had minimal pain and It's amazing but so so strange. Looking back no wonder I was so low- the pain can be awful! I defo see what u mean.

Versailles profile image
Versailles

I suffered exactly what you describe for 7 years. The pain dragged me down and never went away. I thought I would never get rid of it. I was diagnosed with everything from abdominal TB, Crohn's disease and mental illness. After the 5th laparotomy I did get rid of it because thank God they removed my remaining ovary and uterus. After I recovered from what was a very serious operation because endo had obstructed my bowel and bladder again I began wondering where that all pervasive, constant pain had gone. The only solution for me was a total hysterectomy. I was 32 and of course that meant no children but frankly I was so sick of being sick and being in pain that I was grateful. I can still vaguely recall what that pain felt like. You have to experience it to even try to explain it never mind convince some unsympathetic doctor that it is real. Dont let them tell you its all in your head. Its in your abdominal cavity and its sticking your organs together. If they spent 10 minutes in your body they would sit up and pay you the attention you deserve.

in reply to Versailles

Thank you for commenting and I'm sorry to hear of your experiences too. I'm afraid there is still a long way to go as it seems that still too many women meet these 'unsympathetic doctors'. I live in hope I can make progress one day :-)

Tor666 profile image
Tor666

This is going to sound utterly crazy but I have had my pain for so long now and it is so much a part of me I think I would be at a loss if all of a sudden it was gone. I don’t know if that makes any sense to anyone? It’s not that I want to keep my pain, I want it gone believe me. It’s just I cannot imagine my life without it and I just don’t know what I would do with myself if my life was no longer controlled by it.

in reply to Tor666

I do feel too that my pain is so constant, it forms part of my everyday life. Think I would know if it disappeared tomorrow however. I suppose we just need to live life realistically but not give up in the same breath. :-)

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