Still waiting: Hi, I've been waiting for... - Endometriosis UK

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Still waiting

T1dlife profile image
15 Replies

Hi,

I've been waiting for my first lap to see if i have endometriosis but I've been waiting almost 7months for a date for surgery. Is it normal to wait so long? I also feel like the GP doesn't understand how much pain I'm in. Paracetamol and ibuprofen don't cut it when I really need it. What do people use?

Many thanks x

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T1dlife profile image
T1dlife
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15 Replies
Cazywazy profile image
Cazywazy

Hi mine was done yesterday I waited 6 months but it got expedited as it was affecting my bowel. Ask for zapain and naproxen and use a hot water bottle. I really feel for you the wait is so long. Give the admissions team a call they can give you a rough waiting time. What area do you live in? X

T1dlife profile image
T1dlife in reply toCazywazy

How are you feeling? Did they put a coil in? I had on once before and hated it and they want to try again when i have my opp.

I've already had one lap surgery because they thought the pain was my appendix. The worst bit is I have type 1 diabetes too and if I relax on my control the pain never seems as bad but if I stay healthy and I really good control it's like pain all the time, a continual battle between pain and ruining my health. I'm waiting for a call from my gp so I'm going to ask for something stronger. I have one of those ems machines which helps when the pain is manageable but this morning the worst flair up started at 5am and again at 8am. I just laid on the floor crying.

The hospital originally said April but I'm on a 45week waiting list so could go on till September.

Has anyone tried raspberry leaf tea?

Someone suggested it as a herbal alternative.

Thanks for your messages x

Paigelouisex profile image
Paigelouisex

Hey, Keep ringing and emailing them constantly. They told me the wait was 10 months, I called every day and emailed constantly.. I then asked for a contact person to make a formal complaint - 10 mins later they called me with a date for the following week. It’s sad you have to keep going on but sometimes it’s the only option! xx

Cazywazy profile image
Cazywazy in reply toPaigelouisex

I’m glad you have a date, I also complained to PALS and got my date moved forward. Hope all goes well x

T1dlife profile image
T1dlife in reply toPaigelouisex

It's crazy that you have to shout 24/7 just to be noticed. It's taken long enough for them to take me seriously now it feels like I'm waiting for a call instead of getting on with my life!

Have you had your opp now? Xx

Paigelouisex profile image
Paigelouisex in reply toT1dlife

yeah i’ve had mine now, had it on friday xx

T1dlife profile image
T1dlife in reply toPaigelouisex

Did they put a coil in? Xx

Paigelouisex profile image
Paigelouisex in reply toT1dlife

yeah, they burnt off the endo, took a womb biopsy & put the coil in xx

Cazywazy profile image
Cazywazy in reply toPaigelouisex

Hi I was just wondering if you’ve had the results from the biopsy yet. I’m not sure how long all this takes. X

Paigelouisex profile image
Paigelouisex in reply toCazywazy

No i’m not sure if i’m meant to call them or just wait for my follow up appointment in september x

Cazywazy profile image
Cazywazy in reply toPaigelouisex

Yeah it’s a bit confusing on my discharge letter it said she would contact me with results. My follow up is in 3-4 months seems so far away.

Paigelouisex profile image
Paigelouisex in reply toCazywazy

my discharge letter is SO confusing.. doesn’t say anything about removal of ends which he told me he did doesn’t say anything about the biopsy they took

Cazywazy profile image
Cazywazy in reply toPaigelouisex

It is really hard to understand, did they talk to you after surgery as I had so many painkillers I can’t remember what she told me.

Paigelouisex profile image
Paigelouisex in reply toCazywazy

Yeah they came and spoke to me but I don’t have a clue what was said either, they literally put morphine in my drip then he come round - my mum walked in half way through and she said he told her they took a biopsy and cut the endo out otherwise i wouldn’t of had a clue x

Cazywazy profile image
Cazywazy in reply toT1dlife

Yeah they put a coil in. I’m feeling pretty awful at the moment I had cyst/Endo removed and bowel was stuck so they released that and also took biopsy. It’s really uncomfortable at the moment and I’m feeling really sleepy. I know how you feel about the wait, your life gets put on hold. Put an email into the PALS team they really are helpful. X

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