Scared: Was anyone else scared their pain... - Endometriosis UK

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lydipage16 profile image
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Was anyone else scared their pain was all in their head before surgery? or that they wouldn't find anything at all? This is my main concern but i can feel that something isn't right and it hasn't been for a long time.

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lydipage16 profile image
lydipage16
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11 Replies
dawnat profile image
dawnat

I know exactly how you feel. A lot of my symptoms aren't the common endo symptoms, for example the pain is more in my hip and back than my stomach. I know something is wrong and I want to know what it is but scared will agree to an operation and be no wiser. I get new pains all the time which makes me feel like i am going crazy and never have a day where I feel 100% . I hope you get some peace of mind soon

Kangalou profile image
Kangalou

Yes! I had a lap two weeks ago and even though the gynae has said he could feel some stuff when he examined me, I was sure he’d find nothing and I’d be back to square one. As it was, he removed a cyst and excised / ablated stage two for me.

So, I’d stick with it my pelvic pain comes and goes, but my symptoms tend to be more chronic in my lower back and sometimes my hip

Catness profile image
Catness

Yes I felt exactly the same to the point where I actually told my consultant before the lap that I felt like I was wasting her time and it was all in my head. First thing anyone said to me when I woke up was ‘a lot of endo was found. It’s not in your head’ which felt like a huge weight had been lifted. I have a friend currently awaiting her first lap and she’s doubting herself and feels like a fraud. It’s awful :( but as I told her, they wouldn’t do a lap if they didn’t think they were going to find anything so you just need to try and stay positive xxx

RainbowBeth profile image
RainbowBeth

Oh I know that feeling well! I was told by my first doctor that i wasn’t in enough pain, had the lap and I have extensive endo! On a scale of one to ten the surgeon said it’s a 13! Had 3 laps so far and waiting for another! I thought it was in my head, clearly not! Trust your instincts if I hadn’t have cried in my first appointment I doubt I would have known I had endo and still be in great pain now!

h_grahh profile image
h_grahh

It's completely normal to feel like that! I remember feeling so so nervous before my lap, just in case they didn't find anything, but I just told myself that my pain was real and even if my lap didn't show anything, we'd gone some of the way to eliminate endo. So just think about that - know that your pain is real and they wouldn't agree to doing surgery unless there was a good chance they'd find anything. Stay strong, all the best xx

foursimplewords profile image
foursimplewords

yeah I've now convinced myself it's all in my head and that I'm wasting time/resources

Yes! I completely understand, I am waiting for my laparoscopy but have been told it is definitely endo as I have visible lesions on cervix, a tilted uterus (it wasn't previously - apparently endo causes this) and a large endometrioma taking over my ovary! Yet I still think they'll open me up and say nope, nothing to see here, off you go and continue your life of pain and misery that is a complete fabrication (I am a little dramatic :o)).

I think it might be to do with the fact it takes us SO LONG to get diagnosed, we are fobbed off continuously with IBS/normal period pain/all women get the same that we actually convince ourselves we are wasting time.

lydipage16 profile image
lydipage16

All these responses make me feel better about everything, I have surgery on the 21st of March, so next week! I will send prayers for all of you guys to feel better too! Thank you for commenting it helped calm my nerves and know that I’m not alone!

I was in your position before my lap in November and nothing was found, I was pretty upset! I cried so hard I hurt my stitches and ended up feeling worse, but a few days later I came to my senses. A lot of times endo can be missed during a lap, especially the first one, so just because they don't find anything doesn't mean there's nothing wrong at all. Often a general gynae will only check your womb and surrounding area (mine told me he thought it was my bowels and then never checked them!) so there are other things it could be, and while it would be nice to get answers on the day, sometimes you wont x

But it will give you a clearer answer, just make sure you don't think this will be the end of it all as there's still the fight afterwards for treatment or for them finding out if it's something else that's the problem, as I'm now having my bowels and pelvic floor looked into x Good luck, try not to stress! x

kitty270 profile image
kitty270

Yes I did back in 2011on my First lap. Even consultant said she'll take me down and if i'm back after 15 mins then they found nothing. I ended up being under for 3 hours!!! It was everywhere. Don't doubt yourself. You know something is not right. You feel the pain. Just go for the surgery and see. I wish I had done it earlier. Maybe I wouldn't be in so much pain today. I really believe if it's caught early and treatment is started you can delay symptoms. But I didn't. Kept thinking it was normal and carried on for 15 years without seeing anyone. I was on the combined pill and switched to progesterone pill as my mum had breast cancer (mum is fine). But then I developed migraines and came off the pill altogether and from then it was really quick. Within five months I was in excruciating pain daily. could not wear any clothes around my waist and could not bend down due to pain. Wish I'd gone earlier. It must have been slowly developing over the years and then I kicked it into overdrive when I came off the pill. Anyway just trust in yourself and have surgery. Good luck and best wishes for the right diagnosis whatever the outcome x

YankeeMum profile image
YankeeMum

Yes! I am scheduled for surgery in 10 days. I am scared that it is all in my mind, but I am also scared that it is not, if that makes sense. Doctor is anticipating draining cysts, but is prepared for everything up to a complete hysterectomy. How did yours go?

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