Feeling frustrated - Need to let off steam - Endometriosis UK

Endometriosis UK

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Feeling frustrated - Need to let off steam

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I haven't posted here for a while but I've posted in the fertility forum many times recently.

I thought my endo was under control after my surgery and 6 months of zoladex. So I went ahead as advised by my drs with my ivf journey in my hope for a baby.

My first go at ivf in January was successful. I was delighted but always had a feeling that something wasn't quite right. πŸ˜”

I went for my first scan at 7+5 weeks and there was no heartbeat πŸ˜₯. I was heartbroken. A repeat scan a week later confirmed my beautiful baby was gone and I miscarried 2 days later. I was beginning to focus on my grief and looking to the next step when it hit me!

My endo flared up like it's never done before. 2 days following my miscarriage I ended up in a&e with the most horrendous pain I've ever experienced. I thought at the time it was related to my miscarriage. But after the first lot of pain meds wore off and the pain returned it hit me again and I knew that pain and it's location meant ENDO!!

I had an urgent CT scan which showed my left kidney and ureter had grown in size. Something I didn't know could happen coz my left kidney is meant to be non functioning. And the cause was a mass of endometriosis that surrounds my ureter. I went into urinary retention and had to be catheterised and also ended up with sepsis.

The drs wanted to operate but realised it was too complex for them so I had to sit while they tried to control my pain with more drugs than I've ever taken in my life!! 😩

So there I sat for 8 days and yesterday I was sent home still in pain and popping pills!! I now have to wait for an appointment with my specialist which I'm told he has no availability! πŸ˜©πŸ˜”

I'm so frustrated how long things take when our quality of life is so poor. I don't feel I can begin to grieve for my baby until I'm physically well. I'm off work and even if I do go back I can't work in my role of responsibility if I'm drugged to the eyeballs!!

Sorry this is so long but I'm reaching out to you ladies who I know you know how this feels. I work for the NHS so I know how stretched it is and things do happen eventually but my life is on hold now until this is sorted and time is ticking away. 😳

4 Replies
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Can you ask to be refered to a BSGE centre? An endo specialist there might be able to operate on the mass or your uretuer and other tissues.

Hidden in reply to Hidden

Thanks. I've already been referred to BSGE centre last year and it's that specialist I'm awaiting an appointment with regarding this current episode. He had always planned to do surgery but we were delaying it because of my ivf. I guess that means I'm further down the list than ever πŸ˜”

Hidden I'm so sorry for your loss. Can you afford a private consultation and then get referred back to the NHS for treatment?

Hidden in reply to littlebrownbird

Thanks. I've already paid to see him privately when I first got referred to him last year. The NHS is a frustrating system.

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