Is it time to give up?

I think I’m finally reaching breaking point. I used to have the slightest bit of hope that one day someone would finally diagnose me and care for me and that I could live at least a semi pain free life.

After my laparoscopy I got a letter saying that they did not find endometriosis. A one sentence letter. No follow up, no discussion, no nothing and now I am back at square one.

Some people might think that I should be grateful and happy but as I’m laid in bed for the third day crying with the unbearable pain and I don’t feel like I can carry on for much longer, I don’t feel that lucky.

I have to be honest, I am still 100% convinced I have endometriosis. I have ALL of the symptoms and even had an adhesion they had to burn away, with no prior surgery or anything it’s bizarre. According to this journal, “positive histology confirms the diagnosis of endometriosis; negative histology does not exclude it”.

I’ve read so many studies and papers on it and it is completely possible to miss it, it can be microscopic, in another place they didn’t explore and although they took samples to test histology, they took those from the “common areas” and no one had told me where so I can’t even see if it correlates with my pain. It can also be that due to my age the lesions are clear or pink and not visible to someone who is not an expert in endometriosis.

There is also the fact that this journal says that you should not use hormonal contraception 3 months before laparoscopy or it can give false results and they took mine out on the day of the operation.

The reason I am so disappointed in not receiving a diagnosis is that I now have to deal with the common (but always) heartbreaking phenomenon of both doctors, family, friends and strangers believing it is “all in your head”. After 13 years of suffering and asking doctors for help, the first time some people actually believed it was bad was when I told them I had to have an operation. So I’m dreading their response when they find out the results were negative – “amazing, you’re fine then, you must be so happy”.

One man I spoke to after my operation, asked what it was for, I replied “endometriosis”, his response was “oh that’s fine then, you’re lucky it’s not something serious, I know people that have had cancer”.

I just nodded along because I was too exhausted to say anything, but what I wanted to say was “you do know that it takes around 7.5 years to be diagnosed with this? It can mean infertility, chronic pain, not to mention all of the other devastating affects. Women are actually ending their lives due to the pain and lack of support”.

2 thoughts on “Is it time to give up?”

  1. Please hang in there Millie. It’s not all in your head, it’s just not diagnosed yet. Until Western medicine figures it out, mindfulness-based stress reduction helps for chronic pain, even undiagnosed. I wish you the best getting to the bottom of this.

    Like

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