Waiting for 18 weeks on Monday - Endometriosis UK

Endometriosis UK

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Waiting for 18 weeks on Monday

Kellywright21 profile image
14 Replies

Hi everyone , I’ve been waiting for a diagnostic laparoscopy through the NHS for 18 weeks on Monday and I’m going to contract PALS to try and quicken the process. Has anyone got any advise of good things to say or any tips ?

It would be much appreciated thank you

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Kellywright21
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14 Replies
brokenbladder profile image
brokenbladder

I stupidly didn’t think about contacting PALS (even though I waited 10 months for my diagnostic lap). I would tell them about your symptoms and how they are affecting your day to day life. Good luck!

Kellywright21 profile image
Kellywright21 in reply to brokenbladder

Thank you

I was facing a wait of 30/35 weeks for my third laparoscopy ( it’s on my bowels so I’m having surgery with an endo specialist)

My symptoms became much more severe and had a huge impact on my physical and emotional well-being. I saw my GP as the endo specialist wasn’t taking it seriously and she wrote to him. I don’t know what she put in the letter but it worked!!!! The next day of receipt of the letter I was offered surgery date within 2 and a half weeks which is this Monday! It’s considered urgent now. In total I waited 15 weeks from referral to endo specialist till my surgery.

If the GP letter hasn’t worked I was about to go down the PALS route.

See your GP explain your symptoms and get them to write to the specialist 👍

Good luck sometimes we have to push 😏 xoxo

Kellywright21 profile image
Kellywright21 in reply to

Thank you , fingers crossed xx

DizzeePuke profile image
DizzeePuke

I’d recommend calling your consultant’s secretary and letting them know you’re happy to take a cancellation. I’ve had most of my laps done within 2 weeks going down this route. Ask what number they’ll call from and answer straight away, NHS policy is for them to keep calling until someone answers, they’re not allowed to leave a voicemail. Good luck!

F10NA2 profile image
F10NA2

I would contact the consultants secretary definitely and if you don’t have any luck with that tell them you are going to speak to PALS as it’s making your anxious waiting for a date 👍🏼 Hope you get sorted xx

MaloushkaPat profile image
MaloushkaPat

Hello, I was going to post about it actually! Does anybody know when the clock for the 18 weeks starts? Is it when we have the first appointment with the specialist or is that even before when we book the appointment via chose and book until the actual lap? If it's from the appointment booking I'm nearing the 18 weeks too and considering contacting PALS!

Thanks in advance! X

in reply to MaloushkaPat

Hey lovely.

The clock “starts” the date you were referred to the specialist 👍Definitely chase them up! I got my GP to write as my symptoms are so awful and got a date sooner within 2.5 weeks of the letter 👍 Other ladies have also had success with PALS. Good luck xoxo

MaloushkaPat profile image
MaloushkaPat in reply to

Thank you! That's what I thought, I'll be reaching 18 weeks next Wednesday! I'm already on the cancellation list but my symptoms keep getting worse every month (for example today was a complete write off that I spent on the couch either in pain or sleeping because I'm physically drained!). I might consider seeing my GP first before I contact PALS then! Thank you so much again! Xx

in reply to MaloushkaPat

All the best. Hope you get a date soon xoxo

MaloushkaPat profile image
MaloushkaPat in reply to

As an update: went to my GP last Friday to tell her how much I was in pain and how it's been impacting my work and mental health, she said she was going to speak to my consultant...got my lap date in the post today! Going in on 10th September!

in reply to MaloushkaPat

It’s funny how quick they can get you in when a GP gets involved?! 🙂 Really happy for you! xoxo

DaisyThoughts profile image
DaisyThoughts

I would also try and get the phone number for the waiting list and call them directly. That's where I got the best help from but still not a date. I've been waiting over a year now for an operative laparoscopy for severe endo. It's been upgraded to urgent now. I hope you hear soon.

Sagada profile image
Sagada

In December a specialist confirmed I must have laporascopy done ASAP to remove an ovarian cyst and of course to check the endo. She assured me it would be done shortly after Christmas, as by than I was in a lot of pain. My operation was cancelled several times, sometimes due to really ridiculous reasons, every time my lovely GP writing a letter and doing everything to help me. Finally, two days ago I had it done and I'm recovering now. In April, when they canceled for the 4th or 5th time and rescheduled for July, I wrote a complaint to PALS, naively thinking it would change something. PALS contacted me after a month, apologising that the investigation will be done by 19th of June... guess what... on 24.06 they wrote again saying it will be done by mid-July.

I'm wondering if my operation last Friday would be so severe if it was done quicker than with 7 months delay. I'm recovering now, facing a whole lot of emotional and financial problems after this whole stupid battle. And I don't believe that PALS "investigation" will change now anything.

I'm sorry for this negative comment, but I believe it's better to share my story to make people aware.

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