How can I get support following diagnosis... - Endometriosis UK

Endometriosis UK

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How can I get support following diagnosis surgery?

Hufflepuffsoph profile image
12 Replies

Hi,

I hope everyone is safe and well.

I had my surgery at the end of January to diagnose endometriosis. I was meant to have a follow up on 20th April but was obviously cancelled. Other than what I was told directly after surgery (which is a blur from being on morphine) I have had no communication on what was found and what has been planned for further treatment, other than a letter cancelling my appointment. I am therefore on no form of treatment/ pain management other than over the counter pain relief which is not helping and heat pads. How can I speak to someone over the phone about what was found and what treatment is suggested for me to take? My pain has been worse since the surgery and I am really struggling to cope with it.

Thank you so much in advance.

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Hufflepuffsoph profile image
Hufflepuffsoph
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12 Replies
Stacey85 profile image
Stacey85

I had my lap in March.

All I knew was I had an abnormal cyst and endometriosis. post op got cancelled and so did my colposcopy to see what the cyst was.

I put in a complaint to the hospital about a week ago and since then I've been contacted by the clinical director who wrote a letter to the specialists in the city. And I have my colposcopy tomorrow.

Try calling the hospital and tell them you're really not happy getting left in the lurch. Could someone please contact you.

xx

Hufflepuffsoph profile image
Hufflepuffsoph in reply toStacey85

Thank you I will try and find a contact number. The letter I received honestly gave me nothing other than “sorry your appointment has been cancelled”. No offer of a phone call appointment or any form of contact to my doctors.

Good luck with your procedure tomorrow. I hope you get the support you need and keep safe and well.

Xx

Moon_maiden profile image
Moon_maiden

Speak to your GP as well for pain management. It’s likely a telephone call, they should also have had a report from the hospital.

Hufflepuffsoph profile image
Hufflepuffsoph in reply toMoon_maiden

My gp are running an online service of communication so I have messaged them but yet to get a response. Said can take a few days to get a response on non urgent cases.

Moon_maiden profile image
Moon_maiden in reply toHufflepuffsoph

Good luck. That’s the one thing that improved recently, used to be three days, now next working day.

I’d say yours was urgent given the pain factor.

Hufflepuffsoph profile image
Hufflepuffsoph in reply toMoon_maiden

Thank you, fingers crossed I hear back. Possibly is considered urgent due to the pain but I think there’s people worse of than me and rather they get the priority especially in times like this

Woo25 profile image
Woo25

I’m in the exact same situation, diagnosis in Feb and follow up not until July (not cancelled yet) My GP has prescribed me Gabapentin to help with my pain and after discussing my concerns he wrote a letter to my consultant with my questions.

Response back wasn’t ideal but they suggested waiting for appointment to ask question, and if pain is really bad can have injection for temporary menopause until then.

I would try talking to your GP, hopefully they can help you x

Hufflepuffsoph profile image
Hufflepuffsoph in reply toWoo25

I had a phone call appointment today with my Gp and they have given me an appointment for Monday to check BP etc to see what they can give me as a temporary fix until I am able to go back to hospital. They’ve been given no information from the hospital about my operation so that hasn’t helped them know what to do with me. I went on the injection as a trial before my operation and I had horrific side effects from it. My body seems to reject any contraception they try with me so it’s really hard to know what to do.

Woo25 profile image
Woo25 in reply toHufflepuffsoph

I hope they can help you soon. My GP didn’t get any information either, just don’t understand it all!

Fingers crossed your pain starts to ease soon

Hufflepuffsoph profile image
Hufflepuffsoph in reply toWoo25

Thank you 💗

Amywoodx profile image
Amywoodx

Sorry to hear that you're in lots of pain still :( did you have ablation or excision?

Hufflepuffsoph profile image
Hufflepuffsoph in reply toAmywoodx

I am not 100% sure to be honest. I was initially just going in for diagnosis but then they removed some endometriosis from behind my womb. I was very out of it on morphine when they told me so I don’t fully understand what they actually did. This is why I’m so frustrated about not having any communication from the hospital xx

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