I have written to PALS, what do you think? - Endometriosis UK

Endometriosis UK
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I have written to PALS, what do you think?


Good afternoon,

After 9 years of pain and back and forth to doctors and hospitals, I was finally diagnosed with Endometriosis almost 5 years ago. This was under a general gynaecologist who told me that I had mild Endometriosis and she lazered it off.

This operation did not help me and my pain only got worse, so I went back to this hospital and asked for another operation to check if my endometriosis had either grown back or had been missed, she advised it had not grown back and fitted the mirena coil.

After a year on the coil, which helped ease my symptoms for the first 8 months, I had it removed as it stopped helping and all of my pain came back.

After my own research, I discovered that women with Endometriosis should really be treated at a BSGE centre such as yourselves. There were lots of women with deep Endometriosis that had been mis-diagnosed under general and had proper exploration with a BSGE specialist. I finally thought I had found my answer and asked my GP to refer me to your clinic, which she did.

Unfortunately I feel very let down. I was referred to the pain clinic who helped my numbness/nerve pain that I experience but nothing was done about my agonising Endometriosis pain. I felt like no one listened to me. Every letter and phone call I had with the specialist felt like the focus was on my nerve numbness that I experience. I wrote countless letters explaining my symptoms which after my own research, I am certain is from deep Endometriosis, and I got nothing back from the specialist. When I had the opportunity to discuss an operation with him, he told me that he probably would not find any Endometriosis. I was left once again feeling unheard, frustrated, confused and annoyed. I have been suffering with this pain for almost 14 years, I am only 26. I was diagnosed with Endometriosis and I believe that the pain I experience, which is only getting worse, is down to this condition.

I have now asked my GP to refer me to another BSGE centre and I am hoping they will help me and listen to me properly. I had no tests done, only one examination, and the focus was purely on my leg numbness which isn't even a main symptom for me. I feel pushed to the side and I am so disappointed. What about the daily pain that I get in my back, hip, stomach, vagina and bottom? What about the pain and bleeding I get during and after sex? What about the excruciating ovulation and period pain I experience? What about the fatigue I get? What about the horrible pains I get when I pass urine and stools? None of these symptoms were addressed.

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