Hey so I’m booked in to have a diagnostic laparoscopy next Tuesday and as it’s getting closer I’m getting more nervous, to be honest I’m not really that nervous about actually having it done. I’ve had keyhole surgery before to have my gallbladder taken out so I kind of know what to expect but I’m really nervous incase they don’t find anything.
I’ve had ultrasounds, blood tests, sigmoidoscopy but they all came back clear. I just wondered if anybody else had felt similar to me in the lead up to their laparoscopy. I almost feel stupid because as much as I don’t want to have something so horrendous wrong with me I just need answers now for the pain that I’ve been experiencing. I’m dreading being back at square one again and having to start the process again of being back and forth to gps and trying to fight to get a diagnosis.
Hope everybody is okay during this very strange time! X
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Chloelouise92
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Yes, I have had those exact thoughts before my laparoscopy. I started to doubt myself and my pain. I think you should just remind yourself of how much pain you have experienced, and how much you need the laparoscopy, to get through the anticipation. I have had all sorts of tests e.g. Ultrasound, MRI...but the laparoscopy is the only definitive way to get an endo diagnosis (if you have the right surgeon, of course). Just believe in yourself and your body. As long as you have a surgeon that you trust and who is knowledgeable, hopefully you should get some answers and a diagnosis! I hope you get some answers and everything goes amazing xx
Really appreciate this message thank you! I worry that they might not found out what it is and I’ll just be stuck in pain not being able to walk properly forever. I just have to stay positive and hope that they find whatever is causing it! X
Hi Chloe, I had my first laparoscopy last Friday. I had the exact same emotions as you and worked myself up a lot before it, I was surprised when I woke up that I wasn’t so desperate to ask what they found! The surgeon came very quickly and showed me the pictures of what they found, and they gave me the answers I wanted. Each day after I felt better and better, I got home the same day and now I’m feeling “normal” again. I wish you all the best and you have every right to feel the way you do 💛 xxx
I know I’m getting inside my own head about it all, I think it’s because I had a few bad experiences with consultants in which she told me the ultrasound was clear so it wasn’t Endo and rolled her eyes at me when I asked if a laparoscopy was a possibility (I mean sometimes I doubt myself then I think no being in pain every single day not being able to be on my feet longer than 15 minutes at a time isn’t normal!) then I had a gp tell me that sometimes women just have pain and we never find out what it is probably didn’t help me either. I’m glad you got the answers that you wanted, more than anything it confirms to us that we aren’t just imagining it and maybe more medical professionals should listen to women when we tell you we are in pain!!
I had a really lovely Male consultant That specialises in Endo but I’m not 100% sure yet if it will be him doing the surgery as it was cancelled then rebooked but haven’t had my pre op yet so I’m hoping so much that it’s him. Out of everybody I’ve dealt with in getting to this stage he has been by far the most understanding and the most sympathetic!
Thank you so much for your kind words makes me feel much better! Xx
Hi I'm in a similar situation. I was diagnosed through a laparoscopy at 18 with endometriosis. After surgery I had hormone treatment and had to wear the hrt patch at 19. Was a horrible experience. I had my kids in my 20s and started to have extreme pain attacks or just constant pain from about 29ish. Im 32 and have an ultrasound confirming a cyst on my ovary that has bled out and adhesions. But the gynecologist are dragging their heels about giving me a laparoscopy because they don't believe how much pain I'm in. My gp is pushing for an emergency laparoscopy but now im worried they won't find anything and it will go against me in the future when trying to investigate my pain. However I have read that because endometriosis can implant anywhere it can be hidden even to the most talented surgeon so doesn't mean to say it isn't there just that that surgeon missed it. So even if nothing is found doesn't mean to say it isn't there or there may be something else causing the pain and atleast endometriosis can be ruled out. Good luck 👍
So sorry to hear the struggle you’ve had. I find it infuriating as women we have to fight to get some people to understand how much pain we are in. I feel like you get a professional onside and feel like you’re getting somewhere to then come across another professional that dismisses you so easily. The amount of time’s I’ve been told it’s probably just Ibs 🙄 because of course ibs causes all of those symptoms I’ve just told you and would cause me daily constant pain! Thank you and I really hope you get somewhere with having the laparoscopy 🤞🏻 X
Hopefully I can get some answers. Think it’s because it’s taken so long to get here as well the thought of it being not what I want to hear is a bit scary! X
If there is anything wrong regardless of endo, they can at least see. I knew something was wrong and the best way is by the eye rather than scan. They won’t just look for endo. That’s what I held onto at the time for going through with it.
Yeah this is my first too, I’ve had keyhole surgery before (had my gallbladder taken out 4 years ago due to pain) but if I’m honest think that’s all connected anyway but back when I had this taken out I only had that really it was only the past couple of years that all the other symptoms started up.
It’s just a scary thought of finally getting the laparoscopy which I had to almost beg for to then if they find nothing I’ll be back to square one.
I really hope it goes okay for you and they find the answers you’re looking for 🤞🏻 Xx
Me too I’m 27 and have suffered with awful periods since the age of 12 which subsided when I went on the pill...the last few years since having a pill break things have been really bad and I’ve had stomach issues which my consultant thinks is due to my anxiety and IBS - I literally had to beg for a lap too! They found what they think is polycystic ovaries on an ultra sound last December, but my hormone levels were fine which is why I’m doubtful it’s that...also found out both my aunties and Nan have endo but my consultant still thinks it’s probably not endo, so I’m scared that they find nothing but also worried if they do if that makes sense! I’ve never had an op before so I’m a bit nervous. What symptoms have you experienced if you don’t mind me asking? Xx
I’m 27 too! Never really suffered much with periods up until past couple of years but I’ve been on the pill since 15 due to my skin being bad. Of course I don’t mind, just not sure where to start haha. It started off as water infections on and off all the time then I thought I had a kidney infection cos had niggly pains in my lower back but it just got worse and worse. From there things just got worse all the time and I’m in pain literally daily sometimes have days much worse than others but I don’t go a day without being in pain and walking is a no go. I’ll just list all my symptoms...pelvic pain (like stabbing burning etc) shooting pains down backs of my legs and bum, painful sex, sometimes bleeding after sex, tiredness like exhausted all the time, pain when walking everyday (can barely be on my feet longer than 15 mins), painful to go to toilet sometimes so bad I stop myself from going because it hurts too much, can also be painful to wee, constipation and diarrhoea, difficulty sleeping cos can’t get comfortable, occasionally chest and shoulder pain which I don’t know if it’s related or not, I get really horrible pain when I wake up almost like my stomach and ribs have been crushed. There’s probably more to explain but it’s a rather long list haha. Sorry to bore you with that really long post! Xx
Hi im 27 too and I was diagnosed with endometriosis about 3years ago and had alot of tests be4 my first laparoscopy and the same thing as u they all came back clear but then I was admitted to hospital in a lot of pain and had a Brill consultant come and see me and he toke me down to therta as a emergency the next day and I was very worried what if they didnt find anything all tho I had most symptoms of endometriosis was still quit worried even had a doctor tell me that she doesn't think that I had the condition but when I was taken down to therta they diagnosed me with endometriosis and a lot worse than they thought it was going to be, so yes hun been there I was upset that I had the condition but revealed at the same time that we had a diagnosis
Hope all goes well for you hun I dont wish it on my worst enemy but I hope they get to the bottom of what it is
Just shows doesn’t it that we do know our own bodies but I’m very glad that you got the answers that you needed. How are you coping with it now if you don’t mind me asking? Did they manage to remove it? X
No unfortunately I have had two laparoscopy and both failed the first one he didnt think I would benefit from it as there was so much there and the second one my bowl is stuck to my stomach so now I have been referred to a endometriosis specialist in Swansea was ment to been seen in March but cuz of this covid lockdown it got cancelled now there is a back log of operation so could be waitting 14months and i have be put down for emergency and as a priority so long wait unfortunately just cant wait to get it done and hopefully this one they will be able to remove it but it all depends on how much it has spread and if any of my organs are damaged, not coping very well at mo in a lot of pain and painkillers anit doing much at all
Oh that’s absolutely rubbish sorry to hear that. Yeah I’ve found painkillers don’t do anything for the pain either. That’s a huge wait, if it makes you feel any better I was told there was a massive backlog and I would be waiting a long time then just got a call out of the blue to say they’d booked me in. I really hope you get somewhere soon 🤞🏻 X
No when I have a flear up painkillers dont do nothing at all for me, I no if it wasn't for this covid i would of probably would of had the OP done by now it's just mad to think that 14months and that's called as emergency and a priority I understand the pressure there understand but my symptoms have got alot worse since I was first diagnosed I have the fast growing endometriosis so makes it that little but worse and when I spoke to my conclusion and told him everything that had got worse he said to me it could of turn into bowl endometriosis and that means if it is my bowl could rupture at any time so praying its not but even still with fast growing endometriosis it grows a lot quicker and will damage my organs more quickly so by the time I have this OP my organs could be so damaged that they could have to remove what ever is to damaged it's so frustrating as they no what could happen and still could take that long. I'm glad they have got u in sooner rather than later just hopefully they will get it sorted instead of leaving it like me even tho I have had two laparoscopy, could I ask where r u from as if ur anywhere near me just to give me a idea if I mite be waitting the 14months and what hospital u having it done in? I hope so to hun thanks xx
That’s awful! I get the impression that for some reason endometriosis isn’t that well known or understood by some professionals which is crazy because it’s really common! I’m in Portsmouth, having it done at spire hospital in Havant. I’ve been on the waiting list since October last year and was originally told 3 months after 4 months of not hearing anything I phoned and was told another 8 months. I decided I couldn’t wait that long and went private, was booked in for April but then it was cancelled obviously due to Covid. I got a phone call few weeks ago to say I was booked in for August 11th but it’s nhs doing it not private, they are just using spire services to clear the backlog. I really hope you get sorted soon x
That's the problem is not really understood as my consultant told me once when I asked him y does it happen etc he said they dont really no and dont have a full understanding of it its terrible to say how common it is ur write and what gets me is there is no cure for it yea ur quit away from me then I'm down in haverfordwest and having my OP in Swansea, same here hun I cant afford to go private other wise I would just hope the 14months turns into shorter time x
Yeah it’s a horrible situation to be in Hun, I got to the point where I’ve had enough of waiting around and just decided to go private and pay monthly but it’s not bloody cheap! Hopefully it will because I never expected to be booked in so soon so hopefully you’ll hear something shortly 🤞🏻 X
I hope so hun really do I have been in so much pain over the last couple of days think I'm having another flear up was that bad last nite I had to call doctors on call the nurse was very nice but when the doctor called me back he was horrendous so rude he was just had enough now will I say that I had enough months ago I will phone Swansea on Monday and ill be telling them straight I understand to a certain point that we have covid but I cant live my life like this anymore sick I being in so much pain all the time i cant do nothing without being in pain it's no life to live i have no idea what to do next and how i can help myself x
I know it seems so unfair doesn’t it, I said the exact same I understand that Covid is a major issue at the moment but people are struggling on a day to day basis and shouldn’t be left to deal with it! Especially when I know people that have had minor operations that don’t effect them hardly at all it’s crazy! Did you get anywhere with that call? X
What with the doctors on call no the doctor was horrendous and so rude I'll call Swansea 2moz now and see if I can speck to my conclusion and see what hes got to say he probs just say oh sorry we have started in own gynecological emergency list at the moment and we dont no when we will be as thats what he said the last time, I dont want to keep on and on at them but hopefully the more I do hopefully the quicker they get me in x
Yeah definitely give them a ring, it sounds bad but sometimes you’ve got to keep on or you just don’t get anywhere. Let me know, got my fingers crossed for you 🤞🏻 X
Hey yeah it went okay thank you! They did find Endo but because it was deep infiltrating they couldn’t treat it there and then so have a follow up appointment in a few weeks and then will probably have to go for more surgery at some point. Have you heard anything? X
Glad it went ok I'm so sorry hun but addlest u no what it is now hope they get u sorted soon and no not really, I have start new meds and I have a video call with my consultant on the 21st of September but they haven't started on the emergency gynecologist list still at mo really think it's going to be the end of next year like he said ruffly 14months I really hope no but still nothing is happening x
Thanks lovely yeah at least I have some answers now! Hopefully I’ll find out bit more information when I have the follow up call. Oh god really hope it isn’t that long for you. Hopefully when you have the call you may find out a bit more 🤞🏻 X
Hope u do to hun not good waitting ages and I'm hoping so to hun don't think I will be I'm hoping so still a bit of a wait until the 21st of September tho but it's better than nothing I suppose just hope they tell me more about when my OP will be x
Thank you lovely, if it makes you feel better mine was cancelled from April (this was privately though) and then I got a call from nhs to say I was booked in for 11th August so hopefully you won’t be waiting much longer 🤞🏻 X
I had a laparoscopy 2 days ago and felt the exact same way beforehand. This is the best step you can take as you have the best chance of finding out what is causing your symptoms and managing them in the most effective way. Even if worst case scenario they don’t find anything then you know that you can rule out certain things which might put your mind at rest in one way and it doesn’t mean you can’t still seek out treatment, good luck and I hope all goes well xx
Yeah I’ve sort of tried telling myself that either way I’ve got to have it done to either diagnose or rule it out. Just hope I get some answers 🤞🏻 How did yours go if you don’t mind me asking? Did they find anything?
Absolutely! In mine I did get diagnosed with Endo but luckily it’s in the early stages which is sort of what I’d hoped for, I had a Mirena coil done as well so the hope is that the coil and the pill together should be the best treatment right now! I was very fearful before the surgery but to know what’s going on is such a good feeling and hopefully you’ll get the same, let me know how it goes! Xx
That’s good to hear, I’m hoping that I get answers and then me and my partner can start trying for a baby. We would have started trying a while ago but until we found out what is going on we decided to wait because I don’t know how I would be coming off of the pill! I’ve been on it for 12 years now so I assume that’s helped symptoms up until last couple of years. Yes of course thank you so much! Xx
I'm in a similar position at the moment- I've had keyhole surgery before but I've not had a laparoscopy but it seems that is likely the next step for me- we'll see what the specialist says next week but I can't really carry on like this! I've had about 3 years of different tests and I'm still no where. I'm incredibly nervous about the possibility of them not finding anything too and what would happen after and whether they'd still try to help me. I just wanted to say good luck and I hope you get some answers! x
Hey Hun I know it’s rubbish isn’t it. Yeah I had my gallbladder taken out 4 years ago but even that went on for years before they done it and if I’m honest I don’t think it was anything to do with my gallbladder but I hadn’t considered Endo until more recently. I know we’re really lucky to have the nhs and some professionals I literally cannot fault they’ve been amazing but some are just so horrible it makes you feel like an idiot. I’m quite strong minded but I’ve left appointments thinking yeah maybe it is all in my mind! No it isn’t we know our own bodies ids just a shame it takes so long sometimes to get answers. Thank you so much really appreciate it. I’ll post during the week to say how I got on! X
I’m having this exact thought! I finally got my date through for two weeks time after 10 months on the waiting list and now I’m terrified Incase I have to start again! I have my fingers crossed you do find out what’s wrong and they can help you xx
Hey yeah I was on the waiting list for about the same time as you! It’s a long process isn’t it. I had mine done just under 2 weeks ago now and they did find deep infiltrating Endo so just feel grateful that I have answers but they couldn’t treat it there and then because it was deep so have to wait for another op now. Hopefully it won’t be too long. Just try not to worry it’s easy for me to say that now because I have answers but I felt the exact same! The relief when I found out they had found Endo was huge. Just don’t doubt yourself because you know your own body. Got my fingers crossed for you 🤞🏻 Xx
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