I had my laparoscopy on Monday last week, by the time I came round the surgeon had gone home. I asked if there was anyone else who could talk to me about the op and a doctor who hadn’t been present read my discharge letter and literally repeated what had been written down; no evidence of endometriosis and cauterisation of cervix. I do know that they didn’t check my bowel as a bowel specialist wasn’t present and the consultant originally suspected it on my bowel.
Due to the lack of info I was given after the op I rang the secretary today to see if I could find out anything else. She told me that on my notes it says they have written to my gp as there was more gas in my bowel than should have been?? And I need to make an appointment with my GP so I’ve done this and have one today. They also said that gynaecology are happy for referrals to be made in future if necessary but I’m discharged for now??
I’m so confused and emotionally drained. I left thinking it was nothing and now I’m doubting it and catastrophising. Has anyone had a similar experience? Or have any idea what this could mean?
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LT1602
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Hey, sorry it all sounds awful and you don't need all that stress while you're recovering
Was it a general gynae surgeon whom performed the laparoscopy? If so they often won't look at the bowel or bladder as they're only concerned with our reproductive organs. It's not great I know. What was the cervical cauterisation for? did they say? I had that for cervical ectropion but it can't be done via your lap it's done by going through your vagina. Which should have been on your notes you signed before the lap - some aren't detailed which doesn't help.
So what next? Things can be done. Firstly focus on your recovery for the next few weeks at least, until you have enough energy to do a bit of research. Check out the NICE Endometriosis website; this has the process doctors should follow when diagnosing and treating endo. It means you'll have something to push doctors for.
You'll need to make sure either your GP or gynae refer to you to an endo specialist, they will be more specialised and thus will know to check for endo all over your abdomen including your bowel. The endo specialist may want to see you first before adding in a bowel specialist (more resources)- I had two appointments one with my endo specilaist and one with the bowel (colorectal) specialist whom he works closely with to discuss my bowel endo.
Check out the BSGE website for a list of specialist centers; it helps with starting your search. If there's on near you give them a call and explain to the secretary what you've had done, and see if they'll consider seeing you which means you can ask to be referred there by your GP / gynae
I'm not saying you have endo or that you want to look up the above it's just there's a few women on here whom had the all clear from general gynae only to find they still had symptoms and upon seeing an endo specialist some was missed by the general gynae in places they wouldn't have looked.
Thank you so much for all of this information it’s really helpful. It was a general gynae surgeon and up until about two hours before I assumed they would be checking my bowel however when I asked they said there isn’t a bowel specialist so they won’t be doing this. My uterus, tubes etc all looked fine I’m just wondering is it possible that I have endometriosis on my bowel and they have missed it? I don’t know how it works in terms of spreading.
The cauterisation was for cervical ectropion yes, I’m getting period symptoms now so expecting a heavy bleed any time now which I’m dreading!
Yes it is possible; which is pants if they missed it. I had endo on my bladder, uterus and just one bit on my bowel right round the back, so it can just attach anywhere and doesn't need to be all over it, which is why endo specialists know to be more thorough. General gynae just aren't experience / skilled to check anywhere else.
It's annoying that they didn't tell you sooner like weeks before than there wouldn't be a bowel specialist present, that's unfair on you.
Aww no, *hugs* rest and lots of hot water bottles to get you through it.
Keep a log of your symptoms as you recover specifically the ones you think could be bowel endo, so you have something to push for once you're a little better. x
For the past week I’ve felt reassured and relieved thinking I don’t have it and now I feel like I’m back to square one I get every symptom of bowel endo and know that can be very common. I will do that thank you x
Yeah any endo needs to be formally diagnosed via a lap with an endo specialist. Endo centers will have those of course but endo specilaists can just be in a normal hospital. It's just with the centers they have the other specilaists around / easier to get in touch with an have appointments.
I am having another lap on 26th, I am hoping they will be looking at my bowel although I haven’t seen a colorectal surgeon. I am at a BSGE centre seeing a specialist for endo. I have had a hysterectomy 3 years ago because of fibroids and endo on pouch of Douglas and uterosacral ligaments so not much of the reproductive organs left to look at apart from ovaries. I can’t cope with anaesthetic so I am hoping for some answers. I get what you mean when u say you feel drained it’s awful living through this. Hope things improve for you soon x
I hope it goes okay for you and you get the answers you need. Do you think it might be on your bowel? It really is. I feel totally back to square one x
I feel it’s on my bowel and maybe appendix/ovaries. I have been told there is a fibroma on my left ovary but most of my pain is right sided from groin to hip to under right rib. I just hope lap won’t be cancelled due to this panic over corona as I have waited so long for it x
Just an fyi when you sign your papers to say whats included in your operation make sure your discussion about looking at your bowel is on there, also you don't want any +/- things as that is a bit iffy, ask for it to be expanded on. It's your body you want to be sure you know what they're doing or not doing, so only sign it when you're happy it's what you want done; if somethings not listed on there they won't do it.
The thing is you can have bowl symptoms but it’s not always on your bowl but next to it I went to a specialist with bowl symptoms after examining me internally he said the nodule is next to my bowl which explains me bleeding from their but he does not think it’s on my bowl and to know for sure I have to have a lap it doesn’t sound like anything has been done in your lap and then saying gas in bowl sounds like an excuse because you’ve kept asking for a bowl specialist that’s what they do fob people off .if you didn’t have a meeting with a bowl specialist then you won’t be seen by one in surgery or if your surgeon did not talk to a bowl specialist and show proof of this it’s not happening you must make sure you see all the paper work before going to surgery I understand it’s easily persuaded when you get accepted for surgery I got offered surgery and it felt too good to be true firstly I was offered it at my local hospital where no endometriosis specialists are based and two the gynaecologist they referred me to wasn’t specialised you must research the name of whoever is doing your surgery for the future reference I’m not digging so hope it doesn’t sound offensive I just want you to get the best care possible to do that you must follow a few steps like really read the paper work before surgery and ask questions before surgery and really be specific it’s a bit late for that now but for the future for now concentrate on recovery I don’t want to put a downer on it but I hope you get more answers I’m sorry you are going through pain and had a lap like this hopefully you will get more answers x
Thank you for the advice, I think I was just so relieved to finally be having a lap after 8 years of going to the doctors I just didn’t think it through and as they’d told me they thought it may be on my bowel I assumed a bowel specialist would be present until they told me on the day that one wouldn’t be. I’ve now been referred to a vowel specialist for the issues do you have any advice on what I should do when I eventually see one? I’m going to monitor my symptoms in the mean time and write it all down so I have a log x
Just to make sure it’s an endometriosis specialist and a log is a good idea !even if you turn up for an operation dressed in a gown everything and they say bowel specialist is not here say your not going re schedule you’ve signed paper work saying there is one.i got offered a lap and I had to decline I now have to wait up to a year to see a specialist of my choice but it’s worth it cause I won’t have put myself through unnecessary surgery which is what you’ve done not intentionally but in these situations I’m guilty of it too we have to speak up I’ve found it hard myself I’ve only just got a referral after going to my g.p almost a year nothing compared to you but every month my pain gets worse and it’s not hurting them who’s not going through it but it’s hurting me and I can’t let them walk all over me like that my instinct told me I wasn’t going to get the right treatment you can tell by language they use and how they write your paper work and they may even ignore some things you say you must put your foot down in person it’s hard to do but you must be brave and strong .they told me it may be on my bowl but I saw the specialist who thinks it’s not but only a lap will tell me .
That was how I managed to finally get referred to the gynaecologist before but even today when I went to my gp about the letter the consultant had said he completely dismissed my symptoms seemed absolutely certain it was ibs however didn’t hesitate to refer me to a specialist which makes me think there was something in the letter that suggests it could be something else. I’ve requested the photographs from the surgery and I’ve also requested my full medical history which will be interesting as I’ve been so many times over the years to my gp about my problems. I have just been referred to a general bowel specialist I think however I’ve been reading NICE and I’m going to push for further tests as I’m still not convinced. I’m so so emotionally drained this has been going on for years and I thought I finally had an answer but turns out I don’t
It’s good you get to see the pictures yourself you could take them to a private endo specialist who works on nhs see what they think if it’s in your capacity to do so.it sounds like it’s gone on far too long for you!if it was me I’d demand you want a referral to an endo specialist and if they don’t change g.p or you could even go to PALS tell them your surgery didn’t go well you still have bowl symptoms and your almost certain you have endo your bowl wasn’t checked after they said you want a specialist to check it and treat it.x
Hey, I can 100% sympathise as I’m going through the same.. I was seen by a specialist (on bsge), but since they didn’t find any endo on my reproductive organs they would not check my bladder and or bowel. Like you, I feel very strange about this as I can’t completely be sure then. Originally when I was referred I was told MRI would be discussed with me to look for bowel endo but was told today that won’t happen since they didn’t find any where they were looking. They also kept mentioning referring me to GI if I wanted and it made me so frustrated. I am 100% sure it’s related to my period. Without a doubt. I am, of course, happy in many ways that they didn’t find any endo, it’s not a disease you want. But having all the symptoms and no label or understanding of it... it’s killing me very slowly.
Sorry for the long rant on your post, I truly hope you will find some answers especially since you say it was a general gynae and not a specialist 💛
It’s so difficult isn’t it my emotions are all over the place! Do you think it will be worth me asking for an MRI when I see a bowel specialist? I’m certain mine is related to periods too as i have all the symptoms of endo on the bowel but I’m going to closely monitor it from now as I’m coming off contraception which has previously always controlled my periods to an extent. Are there any other steps you can take? I would think about going to your gp to request a bowel specialist referral x
Hi, I think an MRI only shows endo if there’s quite a bit of it but at this point I wish I had gotten one. I might get one done privately later just to see if there’s anything that looks off, as I want to be 100% sure but don’t want to do a laparoscopy again unless it’s necessary... I’m trying to regain some mental strength as this completely drained me and it’s hard to know where to go from here. Having all the symptoms but no cause, super frustrating 😞
I will just have to see how it goes! I feel exactly the same totally mentally drained and to be honest I just can’t be bothered right now but I know if I don’t push for it now I will just keep putting it off and the issues will continue. I definitely do not want to have to go through a laparoscopy again, I’m hoping they do tell me it’s something like IBS although I’ve taken medication for this in the past and it didn’t work thank you I will keep you updated xx
That’s great. They told me they aren’t trained to look there, but if the endo was widespread there would be a follow up laparoscopy with a general surgeon there. I think it’s uncommon to have it in the bowels only without having it somewhere else
I’m assuming that I don’t have it and trying to stay positive but they did tell me that they weren’t able to touch my bowel, mostly feeling frustrated that they still think there’s something wrong but failed to pass this info on to me, I only found out when I rang up seeking more info
What I think they're saying is its not on the outside of your bowel or anywhere else in your pelvic cavity which makes it extremely unlikely you have it inside the bowel. I'm sure you should follow up with a colposcopy see if the pain and issues are ibs/coeliac or something similar. You haven't explained your symptoms so I can only assume you were there due to pain? I saw a neurologist for my endo as the gyno felt surgery would be ineffective. The neurologist explained that the pain is actually in my muscles and nerves and they have a memory, so even if we laser the endometriosis off I will probably still have the pains after . So they are referring me to physio and I'm having a steroid and local anesthetic injected into my lower abdominal muscles behind the public bone. I feel very positive. It's taken me 14 years to get to this point. I know it's frustrating looking for answering because I've been there but keep positive and don't give up on finding answers.
I used to have very heavy periods but these are controlled now with the injection but I’ve decided to come off this now and monitor them properly, I still have a lot of lower back pain and abdominal cramps and I go to the toilet A LOT and often get the symptoms of ibs but this isn’t all the time and tends to flare up occasionally. That’s really positive and I’m so glad you’re finally getting somewhere and they’ve offered you some kind of solution to the problem, really hope this works for you! As a young woman I feel we’re not taken seriously by a lot of doctors and it’s frustrating that it’s taken so long for you but I’m glad you finally have an answer x
Thank you. Maybe you would benefit from the same. I get a lot of pain around my pelvis and even in cervix and my bum (tmi) and they said that the whole pelvis has become sensitised to the pain from my pcos and endometriosis... Like a burn on my hand that is very small, but the nerves around it are sensitive. But imagine having that same burn for 15 + years. Added to my muscled trying to protect the area they have been in spasm for years. Hence the pain
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