Have you asked for surgery date to be mov... - Endometriosis UK

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Have you asked for surgery date to be moved forward??

harrietkatie profile image
13 Replies

When I saw my consultant he said he would get an endometriosis specialist to be with him for my laparoscopy. He said it would most likely be end of October.

My pre op has been moved a week on now, so it’s 3rd nov.

I called up a week ago and the lady said she can’t give me an exact date but my surgery will most likely be around end of novemeber. I can deal with that.

Then I called up yesterday as was worried with my pre op being rescheduled, my surgery will

Be moved too. She’s now saying it won’t be until the new year!

Apparently the only way to get it moved closer is to go to your GP. I am in so much pain, and missing so much time off work, which is leading me to lose a lot of my wages each month.

I have an emergency app booked for 10am this morning to see what other pain relief I can take, but I also want to ask for my surgery date to be moved forward, has anyone been successful with this?

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harrietkatie
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13 Replies
dawntildusk profile image
dawntildusk

you could ask your dr to write to them asking for your date to be expedited however in some cases where the procedures are multidisciplinary this is not possible. i had to wait 9 months so they could organise 3 surgeons together. also in view of it coming upto the winter months from experience this also may knock things back. its definitely worth an ask. sometimes its who shouts the loudest. what medication are u on and what are your symptoms?

harrietkatie profile image
harrietkatie in reply todawntildusk

Thank you for replying. Yeah I understand that, and she did say it’s trying to get the two consultants together. But then I wonder why can’t the endo specialist just do it solo?

I’ll ask today and see what the GP says. I am experiencing anxiety along side it.

I was prescribed codeine and that didn’t help, then recent I have been prescribed tranexamic acid and mefenamic acid but these aren’t doing anything either!! So I’m going to go in today and ask what is next

dawntildusk profile image
dawntildusk in reply toharrietkatie

no problem. all i can think is if you are under for example a general gynae they will use their slot and the endo spec assist otherwise you may really need a referral direct to the endo specialist. if it is suspected that you have severe endo i would say you need to be under a bsge specialist anyway but this will take time :-( it is usual to suffer anxiety along with this condition. ive never had it myself until this journey started. i have good days and bad days but the most important thing is to keep talking to people about how you feel. that has been the best medicine for me and has got me through some dark days. when it comes to medication everyone is different. are your pains continuous or just during your period? what dose of tranexamic acid are u on and when/how do u take it?

harrietkatie profile image
harrietkatie in reply todawntildusk

It used to be just around and during my period. I am now 9 days past my last day of period and I’m struggling. I’m off work today because the pain is radiating down my legs. Also have had such a bad headache last two days but unsure if that is related. I can get very nauseated also.

Sex I think is a no go because it hurts so much, I can’t even wear tampons. Last period I had plum sized clots which was really horrid. I’ve not had clots like that before.

It’s seems that every cycle that passes, my symptoms are getting worse.

Regarding the tranexamic acid, I stopped taking it during this last cycle because i was really sick on it. So just have been sticking to the mefenamic.

dawntildusk profile image
dawntildusk in reply toharrietkatie

i used to get the pains radiating down my thighs too. i also had adenomyosis which we think may have been the cause for this. i used to take naproxen which is also an anti inflammatory too. its important to take it with food. i would usually start taking this a couple of days before i was due on so it was already built up in my system as recommended by gynae. it was the same for the mefanamic or tranexamic. dont wait for your symptoms to start. i had an allergic reaction to mef acid so stuck with the tranexamic however the endo specialist doubled my dose. im not sure a gp can do this?

dawntildusk profile image
dawntildusk in reply todawntildusk

just had a thought, not sure if mefanamic acid is an anti inflammatory too??? so would need to check with gp????

sometimes it isnt that the medication isnt suitable but that it just needs using in a more effective way.

The problem is that with any surgery, they need more than just your consultant - there's the anaethetist, the recovery team, the nurses, the operating theatre, the ward bed. It only takes one of these things to not be in place and the surgery can't go ahead. With complicated endo surgeries it then becomes even more difficult - for my last surgery back in March I had my endo specialist and his team, the specialist endo surgeon, the bowel surgeon and his team, and the urologist and his team. It was crazy. It was a very long wait for the surgery and I was the only patient on the list for that day. If an emergency had come in or any of the people on that list had been unable to be there for any reason, they would have cancelled my surgery.

It pains me to say this, but endo surgery generally isn't an emergency so although we are horribly ill and the wait is very difficult, I would be prepared to be told that there is nothing they can do to bring your surgery forward (sorry).

BTW traxenamic acid is not for pain relief, it reduces bleeding and you will need to take all the other pain relief along with it. Are you taking the codeine and mefenamic acid together?

harrietkatie profile image
harrietkatie in reply to

Yeah I completely understand that, it still is frustrating though isn’t it? I work at a behavioural school where I am constantly being kicked etc and it’s the worst when I feel like this.

No not together, the gp didn’t recommend that to me.

in reply toharrietkatie

You can take them together. You are most likely to get best results if you combine pain relief - you can safely take paracetamol with an NSAID like ibuprofen/diclofenac/mefenamic acid plus an opiate like codeine. Your GP should have explained that to you. I was using codeine + paracetamol + mefenamic acid + diclofenac suppositories. I had tried more powerful opiates like oramorph and tramadol, but I have 2 kids and my husband was working away a lot at the time and I had to be reasonably functional and able to drive.

I have found that getting decent pain relief has been the single most difficult thing. It is a nightmare. Might be worth trying a few GP's at your surgery to see who is most helpful or asking if any of them specialise in women's health or pain management.

harrietkatie profile image
harrietkatie

Dr has given me a sick note for a week off as she thinks I shouldn’t be at work right now, also prescribed me tramadol which she said for the first week whilst my body is getting used to it I shouldn’t be at work. But I am so unsure what to do as I can’t afford a week off and also don’t want to piss anyone off at work as we are short staffed !!

Tillyfloss profile image
Tillyfloss

Hi. Yes it is very frustrating with the constant waiting. I did get my surgery bought two months forward as I was admitted into the local hospital who were really concerned at how quickly my cysts were growing ( I'd been really poorly with a ruptured cysts 5months earlier) so they chased the bsge centre till it was bought forward but if I hadn't had the local surgeon chasing I'm don't think my mithering his secretary would have helped. Hope you get a date soon. Xx

Lucylight89 profile image
Lucylight89

Hey,

You could get yourself added to a cancellation list for a lap. I did this when I had mine last year. I didn't get much notice for it but I was desperate to have it done. The hospital called me on a Friday to let me know there was an appointment and then I arranged the pre op for Saturday and I was in on the Monday for the lap.

Obviously there's no guarantee that it will be any earlier but might be worth doing if you don't mind the short notice.

X

harrietkatie profile image
harrietkatie in reply toLucylight89

Oh brilliant thank you, I’ll call the gynae department and ask Monday x

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