Laparotomy waiting times?: Hi, I've been to... - Endometriosis UK

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Laparotomy waiting times?

Dinky26 profile image
13 Replies

Hi, I've been to see my gynaecologist today as I've been having really bad pains going down my groin and left leg. I have stage 4 endo and 2 endometriomas on my left ovary. One is 2cm and is inside my ovary and the other is just over 6cm. She's going to try and save my ovary but said she will more than likely take it out along with my fallopian tube. She said due to coronavirus the wait might be quite long! Does anyone know approx how long the wait is? This pain is unbearable and it's 24/7. I've had it constantly since the end of may. Thanks

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Dinky26 profile image
Dinky26
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13 Replies
skeletonclock profile image
skeletonclock

I know it's not exactly the same but I'm having a laparoscopy for endo on Monday and I also started the process of getting it done around May. I did have to keep hassling them until I got the appointment though.

Lindle profile image
Lindle

Why are they doing a laparotomy - is this at a tertiary endo centre?f

Dinky26 profile image
Dinky26 in reply to Lindle

It's not an endo centre she's just a normal gynaecologist that has a keen interest in endometriosis apparently. At first she wanted me to have a full hysterectomy as she gave me a internal exam and it was painful. She said my uterus is hard and fixed in place. I refused (I'm only just 34) so she said she would remove the cysts but would most likely need to take the whole ovary so instead of doing it by laparoscopy and then converting to laparotomy, she might aswel just go straight for the laparotomy! I'm wondering if she gets paid more for the type of surgery she does!

Lindle profile image
Lindle in reply to Dinky26

I doubt she is paid more as it is actually against the law to do this outside a tertiary endo centre.

Dinky26 profile image
Dinky26 in reply to Lindle

Is it? It's just through the nhs. It's a park hospital. Nearest endo centre to me is a hour away so I've just been sent to the nearest one

Lindle profile image
Lindle in reply to Dinky26

Where in the UK are you - which country?

ber_dock profile image
ber_dock

I think the waiting times differ from hospital to hospital atm.Mines 3 to 9 months.

If she didn’t give you a rough date then it could be from a couple of months to 9.Some ladies have reported even up to 12 months waiting time.

Probably best to ring the secretary to see if she can roughly give you a month.

I had to have a laparotomy to remove both Fallopian tubes and to try and save both ovaries.

Unfortunately,like you I have endometriomas on both ovaries.Inside and out at 4.5x5cm.

I feel for you,the pain is absolutely horrific,truly is.Both thighs/Legs and groin are effected and it’s absolutely unbearable pain.Completely disables me

Good luck

Dinky26 profile image
Dinky26 in reply to ber_dock

She just said it would be quite a while :( I'm expecting over a years wait but I hope not!

The pain is awful, it hurts to stand up from sitting at the tops of both legs in the creases. My inner left thigh feels swollen all the time and my left legs feels heavy and stiff, when I walk it feels like i have to swing it round. Sorry your feeling this pain too. Hope you get your op soon!

ber_dock profile image
ber_dock in reply to Dinky26

Aww bless you!

You hang in there girl..It’s awful how long we have to wait..I totally get the leg swing.I feel my thighs are now that damaged that I’ll never be able to reverse the damage.I get really bad deep burning too.

Keep strong and it will soon be here..focus on Christmas and having a relaxing time- pamper yourself with self care.Face masks,Hair masks.Foot soaks..I listen to a guided meditation every night,really helps my mind wander and relax the muscles.

You can do body scan meditations.

Lots of Epsom baths and self aromatherapy massages.

Also yoga that focuses on opening the pelvis and thoracic spine,if you can manage?

Also stretches to open the hips,groin,hamstrings,thighs etc it’s not going to rid you of pain but it will help you persevere the pain in the long run while your waiting.

I’m just experimenting with castor oil packs..it can be a little messy but I’m trying it bcus I have nothing to loose.

Good Luck with everything,wish you happy health and a bright future.

Moon_maiden profile image
Moon_maiden

Ask your GP for an urgent referral to the pain clinic, it might tide you over. The amitriptyline helps, but nothing seems to work completely now.

I completely understand and in the same boat waiting for a hysterectomy and endo removal

Check for cancellations as well, and let secretary know re pain is constant. I spoke to the secretary yesterday and said she’d try to get back to me next week.

Dinky26 profile image
Dinky26 in reply to Moon_maiden

I tried amitriptyline but it didn't work for me. I'm now on pregabalin which helps dull it a bit but like you nothing takes it completely away. I'm also on zapain which does nothing but it does make me feel sleepy so I take it before bed to help me sleep

lizzyxx profile image
lizzyxx

I’ve been waiting for my lap since 2nd January and been on the emergency waiting list since July and still no date yet

Dinky26 profile image
Dinky26 in reply to lizzyxx

That's awful you've been waiting ages! Hopefully not too much longer for you

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