Endometriosis UK
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Hi all, a bit of back story. I am 25 and had bad painful periods from the start, due to this my GP put me on the pill since 15. The last couple of years my pain worsened and became unbearable. My friend who had endo suggested I could have it so I pushed my gp to send me to a consultant.

I was the. diagnosed with endo on the womb after have a lap in April, was taken off the pill and had the Mirena coil fitted, then started 3 months of zoladex. My consultant stated that due to the amount of pain I was having and the small amount of endo she found that there was a strong possibility that I had endo in my bladder or bowel.

During these 3 months of zoladex and the Mirena, I had constant pain and spotting/light bleeding and also started having period type bleeding from my bum. I spoke to both my consultant and gp who were not concerned and simply stated it was common with endo. My gp thought that when I saw my consultant again that it would be probable I'd have more surgery to see if I had endo elsewhere. He prescribed me naproxen for the pain, and I also continued with codeine and tramadol when needed.

After seeing my consultant at the end of July, she suggested that the Mirena could be making the pain worse and decided to take it out. She then suggested a further 3 months of zoladex and does not wish to do further surgery at this time. I told her how the pain had increased and since last seeing her I had been diagnosed with fibromyalgia, she said the conditions and linked and suggested my gp gave me gabapentin for the combination of the two conditions, which he has since done.

There was a slight gap between the 3rd and 4th zoladex, which I presume is the reason for having a period and I have continued have slight bleeding from my bum and pain, although much less than before.

I was extremely frustrated and angry and felt as though both my consultant and GP believe I have endo elsewhere, but they are prolonging surgery. I next see my consultant again in October after completing the course of 6 months zoladex. I have tried talking to my GP about what will happen in Oct when the zoladex ends but he said try not to worry about it for now.

My question is have any of you ladies been through this? What will happen after the zoladex finishes as I've reached the limit so they can't give me more? Can they give me more zoladex after a break, if so how long will the break be?

I am really not looking forward to October when the zoladex ends as I dread going back to normal periods, on or off the pill. I am really struggling with the pain from fibromyalgia and the thought of period pain on top is just too much. At the moment I cannot work because of the pain and am signed on to ESA, I feel like my life is passing me by and dread thinking of what will happen in the future financially because of the pain.

I have a supportive family and partner, but they do not understand the pain or conditions and I start to feel very depressed about it all. How have you overcome this?

Thank you, love to you all for being such amazing strong women xx

1 Reply

Have you tried duloxetine? It was a miracle for me. Used for chronic pain and depression as well as other conditions. I am on 20 mgs a day and have only mild pain that I can control with acetaminophen. I used to take lots of meds that were so hard on my body. Hope this helps!


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