So I finally got my appointment with the specialist. He asked me some questions, gave me an internal exam and said he thinks it's endometriosis and could quite possibly be on my bladder and bowel but they'll see once I have the lap as I'll need to have a separate one to address the bowel. My problem is not that I'm a lil scared of the surgery itself, though I am a little, but that they'll actually find nothing at all. Because then what? One scan I have a 'big nasty' endometrioma, the next they don't think they can see it, I am in so much pain. When I have manageable days I think 'it's not great but It's bearable, am I fussing over nothing?' But then I have days like all this week where I feel as if my insides are being stabbed up repeatedly and it aches inside of me and even my bottom and I cannot possibly go to the toilet, and on top it's like I'm having a massively painful period but I'm not at all actually.
Has anyone else felt like this? I just want answers. If it's not this I don't know what the next step is, I've been left to suffer with this long enough.
If you read this thank you for letting me rant! I hope you are well.
Xx
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Veronica_star
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Endometriosis is very hard to diagnose and on average takes 10 years to confirm. I've had previous surgeries and they found nothing! I had another surgery last week to remove my fallopian tubes it should have took 40 minutes but I was under for 3 hours. They found old scar tissue and endometriosis everywhere they took one of my ovaries and peeled the other off of another organ ! I've had horrendous pain since the age of 18 just after I had my son I'm now ,38 ! I've been in hospital 11 times due to pain and countless scans and internals it wasn't ever picked up . If you have your surgery and they don't find it don't give up . Insist they get to the bottom of it .. endometriosis can hide behind your organs anywhere so it doesn't mean it's not there . I personally think there should be more research into endometriosis and why it's so hard to diagnose . It ruins lives . I hope you get the answers you want and need let us know how you get on x
I also had the same kind of pain as you and even in my bottom it felt like someone was pulling my insides out . Useless doctors make you feel like it's in your head so find a female doctor with experience x
It's so nice to get some understanding thank you. I can't believe how much you've been through in getting a diagnosis that's insane. I've had the most trouble since my youngest who's now 7 so I should count myself lucky I suppose. Thank you so much for the confidence, I'll definitely keep pushing if things don't go to plan, I can't live like this. I hope things improve for you after this most recent surgery and tgat you are recovering well. Thank you for your reply it means so much, I'll keep you updated! Xx
That was so amazing to hear you say that. Just because you cant see it doesnt mean the endo isnt there. Your so right about pestering the doctors. Ive been going on and off for 25 years and they did nothing but fob me off. From when my first son was born to even just last year. Im now in menopause (so they think!) And have less periods and relieved the endo pain is so much better. But the menopause is awful. I work for the nhs (im a nurse) and i have annoyed some of the useless gyne drs at our local hospital at their lack of support for women. My daughter is only 11 and i do think more research is needed. I met a really old school dr once and he told me periods are not meant to be painful and pain means something isnt right. I stick by that today. Got another scan next week. Xx
I am 2 weeks post op from my first laparoscopy now. My biggest fear, 100%, was that there was nothing there and it was all in my head, I’m sorry you’re feeling like this too but it probably is a normal emotion to have. You’re in pain, the lap seemed a light at the end of tunnel and you don’t want that hope to be taken away by being told it’s not endo!
BUT, you are in pain! Your mind isnt going to play tricks on you and the doctors won’t give up on you. So if it isn’t endo, they will find what is causing it and help that! Your symptoms very much sound like endo to me though...
These were my symptoms to a tee! I have always had painful periods (or so I thought) and then I had my daughter and everyone said "oh, you're periods will get easier after childbirth" boy were they wrong! Over the last 8 years they have slowly got progressively worse to the point of it's no longer just unbearable pain when I'm on my period it's symptoms all throughout my cycle. And they're random and unpredictable. I caould be stood at work absolutely fine and then it feels like someone has run a steak knife across my abdomen and the only thing you can do is crouch down (not easily explainable haha). I had my first diagnostic lap on the 6th June and they found endometriosis on my uterus and two cysts on my ovaries (none of which showed up on a scan). It's totally normal to be nervous, I was petrified but honestly you know nothing about it and hopefully you'll have the answers you're looking for the other side. I was so relieved to have a diagnosis as it meant it wasn't all in my head. Xxx
Thank you so much for your reply and reasurrance , that really does sound similar to me! I'm so glad you have your answers, fingers crossed that happens to me and I'm not just plain crazy! Xxx
I had my pre op in September last year I only had the surgery 3 weeks ago! So you may find it will still be months but at least the ball is rolling . just prepare yourself it can be very emotional after the surgery so make sure you have the support of your closest and someone to talk with and sit with you etc because you will need it during the weeks after x
Oh my god really! I thought they were only viable for 4 weeks? That what I've been told anyway. That's absolutely ridiculous I'm so sorry you had to wait so long, I'll be having a melt down if that happens!
Thank you so much for the advice, I'm probably going to be a mess. How are you feeling? I hope you're recovering well x
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First lap tomorrow, nervous but relieved that it's finally happening 
Just been diagnosed...
Anyone had endo grow back after having it removed? 
Symptoms really all endo related? 
Toilet troubles!!! 
