To have lap or not?

[Telli686]

Hi, I'm new to this so bare with me! I am seriously stuck. I have been suffering with practically all the endo symptoms for ten years and was determined endo was the cause! But after years of negative tests and doctors either fobbing me off with IBS or telling me its all in my head, I was determined to get a laparoscopy to prove them wrong and finally get answers. However, the lap is booked for next week and i'm freaking out! I can't decide whether the pros are more than the cons, I've been scared off by the risks and the niggling doubt is creeping in, what if I don't have it? Deciding whether its too risky and leaving alone wouldn't be such a bad idea? Then left with scarring for the rest of my life to find I didn't have it? But then what if i don't have the op and am risking my future fertility by not investigating and potentially treating now? Please help, i'm running out of time to decide what to do! x

[lisams88]

Hi Hun, I definitly understand your concerns. Just to try and reassure you the scars are minimal, mine are barely visible. I had the exactly same thought before my first diagnostic laporoscopy Hun but it’s the only way it can be diagnosed and at least you will know for definite sweetie. Keep smiling xx

[Telli686 in reply to lisams88]

Thank you, it's so nice to hear from someone who has experienced this. That is what I keep telling myself, that if I don't have it i'll never know, but I just can't get the idea of things going wrong out of my head, no matter how small the risks are But it is good to know the scarring isn't too bad, the idea of going through the op and finding nothing but still having scars really scared me! I am useless at decisions so one as important as this is horrid, but I keep telling myself I have a few days yet, I need to make up my mind! xx

[cmbxm in reply to Telli686]

My scarring is virtually non existent, I had my op in october and they just look like silvery slits now and will continue fading xx

[Telli686 in reply to cmbxm]

Thank you, that's reassuring to hear xx

[princessk09]

I know how you’re feeling, I’ve just been put on the waiting list for a lap. The thought of being put to sleep and the small risks do freak me out but you have to think about how you will finally have answers whether it’s endo or something else.

The best thing to use on scars is bio oil once they have healed. So maybe try that for a few months afterwards.

[Ken1370]

I understand how you must be feeling but only you can make this choice. With this said personally I would do it if it is causing issues and anxiety over not knowing what is going on. I’ve had 4 laps and the scarring is so little you can’t really tell and it’s apart of my journey to a happy and healthier life. I’d write down all pros and cons. Wish you the best and hope they can find the cause to give you peace of mind. Peace of mind has always been huge for me. If you don’t mind me asking what have your symptoms been?

[Telli686 in reply to Ken1370]

Hi, that's the problem I'm way too indecisive 🙈 I suffer hugely with anxiety and overthink everything, the idea of not finding out and potentially risking my fertility kills me, but the idea of putting it at risk through the diagnosis scares me even more. When I'm suffering a bad flare up all I want to do is know, but other days (few but there are some) where I'm ok I think it's ok I've survived, I don't need surgery to tell me something is wrong and put myself at risk. This has been going around my head for weeks, all leading up to an op I may or may not have in 5 days time because I really can't decide. The stress is torture. I have very heavy periods and debilitating pain that will dull with plenty of painkillers, but then I also have severe IBS symptoms that seem to be cyclical which does not go with any form of pain relief at all and can last days. Doctors have told me it's just severe IBS, my scans have all been normal for ten years and I feel like I'm going insane. Xx

[Ken1370 in reply to Telli686]

I’m so sorry I also struggle with lots of anxiety but I’ve come to believe it’s due to my hormones. I can honestly tell you that my scars and surgery haven’t effected me negatively. I had my 1st lap when I was 21, 2nd at 25, 3rd at 28, and my recent one 2 months ago. All surgery’s went good and they found a great deal of endometriosis each time. I do not regret any of my laps. My only mistake was not getting on birth control after to keep it under control. Listen to what your body is telling you and you will make the correct choice. Happy to answer any questions you have. Just don’t want anyone to feel alone as we struggle through the unknown of health.

[C765]

I was fobbed off with IBS for years also and I had the exact same thoughts and feelings as you about the lap. The thing that made me decide was my fertility, that was the most important thing to me out of all the scenarios. I know I want children and I knew something was wrong with me down there. I needed to know if it would affect me having children or not. Either way I thought I needed to find out for definite what was wrong. If not then at least I would know someone's had a look down there and all looks good or if they do find something they can treat it before it gets worse. I also wanted an answer for my pain and I wanted it to stop. I was so close not to doing it but I'm so glad I did it cos he found it and said I would have struggled getting pregnant easily and now it's been removed I have a much better chance.

Ive had two laps, the first one was just diagnostic (he couldn't do the op properly cos I needed bowel prep to make it safer) and the scars from that were so small and neat, I had one inside my belly button and one next to my left hip. So those would have been the scars if he didn't find anything. (ask your guarnatolgiest what scars he does for just a diagnostic)

I worried so much about the risks as well and convinced myself at first it was too risky. But then you take risks everyday in your life without realising. They have to mention the risks to cover their backs if for some reason something went wrong. This community gave me confidence cos I thought well everyone's talking about their laps and I saw nothing about any of those risks I was told about.

Hope this helps, I know how you feel xx

[Dee11]

I know it’s scary thinking about going for surgery, but have you also thought about what your future could be like if you don’t? They don’t make the decision to operate lightly, and if it means finally finding out what is wrong with you then at least this way they would be able to treat it.

I’ve just had my second lap, and I’ll be totally honest.... from my first lap, I had two incisions, one which wasn’t stitched that neatly and so I can still kinda see it, but it’s tucked into my belly button so you really have to search for it. You can’t see the second one now, except maybe the faintest of lines in certain lights. From my second lap, I’m hoping they’re going to heal much better as they just seemed so much neater looking afterwards than my first. But they’re so small that they could never really stand out and be obvious.

Only you can make the decision, but don’t let the fears of what will happen during a relatively short amount of time on one day affect how you could feel for the rest of your life x

[semitone]

I just had my first lap on Monday after putting it off for a couple of years. The first consultant I was referred to didn’t seem to think I would have endometriosis because despite my other (really severe) symptoms I didn’t report pain during sex. This made me question whether I should go through the risk of surgery just to be told there was nothing wrong. I decided against it at the time for this reason and because I didn’t feel comfortable with the team at the hospital I was referred to, but then my symptoms became a lot worse.

After my bad experience with the first hospital I asked to be referred to a specialist endometriosis centre for a diagnostic laparoscopy, rather than then standard gynae department I was referred to last time. I was really nervous about going in, but the hospital were fantastic and all of the staff put me at ease, the anaesthetists and surgeon were all great and I felt very safe.

My incisions are still healing and quite scabby but they are very small. I have one next to my left hip, one below my belly button and one inside, but I had quite widespread endo. My belly button does look different at the moment which was a shock but I’ve been told this is due to the swelling and gas they use to inflate the stomach and will go back to normal. It’s a personal choice but I’m so glad I eventually did have the surgery as I now have proof that I have this condition and it isn’t all in my head! It feels like such a relief.

Just remember if you really don’t feel comfortable having the surgery at the moment you can have it later, and if you don’t feel confident with the hospital you’ve been referred to you can request another referral. It’s your health and your choice. Good luck!

[JOSANDY40]

Hi Telli, In the early stages of the disease sometimes the Endo can't be seen. If you have the symptoms of Endo and its every month, flooding, extreme pain, long periods, bloating, tiredness, sleep loss for a couple of years. Taken painkillers and not managed. With serious forms a Vaginal Ultrasound will shown distortion or cysts, some called chocolate cysts as they are made up of old blood and liquid. A Lap might give you the answers and you can have treatment. Unfortunately IBS is very common and the doctors will opt for that but myself I have Endo on my bowel badly therefore have lots of problems . I wish you luck and hope you don't have Endo. x

[Telli686 in reply to JOSANDY40]

Hi Josandy, thank you for your response 🙂

I asked many times about endo on the bowel and it's always been dismissed as I show no signs on any tests from ultrasound to MRI absolutely nothing, I have heavy and painful periods to the point I cannot get off the floor and want to call an ambulance, but then other periods are bearable so it's very up and down over the years. I have bad hip pain always when I'm due on and terrible bowels again the week before and often during a period. Unfortunately despite it being cyclical and clearly linked to my period most of my pain is categorised as severe IBS so they won't listen. After all these years I'm starting to doubt myself! I don't want to go through surgery to find out it is IBS after all xx

[JOSANDY40 in reply to Telli686]

Hi Telling, IBS doesn't normally only happen when a period is due. Have you tried taken a progesterone only pill and taken it continuously? Endo effects woman in different ways. On a basic level it's the same. End I comes in different colours, yellow, black, red or invisible. Some woman have no symptoms and only when a c section or other that they find they have the disease. Some it stays within the pelvis or like me other organs including lungs. Mine started as soon as my first period at 10. But only discovered when my bowel blocked. I was treated for stomach issues/ bowel, lung inflammation. By the time I was 28 my lungs bled for 3 days of my 7 to 10 day periods. I now have symptoms on and off almost daily. I feel if you have exhausted all other things, diet, etc. Then is appears you will have to follow your gut feeling. If you decide to go in this direction you will need to be with a Clinic that is for Endo where the specialist isn't just a Gyne! You can find one online. Get your doctor to refer you to where you want to go provided you know the specialist and Clinic. The knowledge about this disease even by some doctors is not up to date. Even it has now been found in men's prostates! Diet does help. Anti-inflammatorys, Anti-histamines, Fennel Tea and Belladona help with cramps. Best wishes Joy

[Telli686 in reply to JOSANDY40]

Hiya, thank you for replying! When you say to be referred to a specialist is this private or nhs, as the surgeon I'm booked in with is a Gyne with an "interest in endo" and to be honest no I don't fully trust the hospital but getting referred to any hospital was hard enough and I'm worried if I cancel they won't take me seriously next time? I know I could leave it and have it done another time it just scares me that I might be leaving something that could progress that I could have caught earlier, but then the risks of surgery are seriously putting me off. I'm still in such a predicament and it's booked for Thursday! I need a sign 🙈 I tried three different pills one was progesterone only I believe and they either made me very sick, and I had to come off it within days or did absolutely nothing even after about a year so I came off them, I was eventually put on one that stopped my period intermittently every three months I'd have one instead of monthly just so I could get through my a levels without time off school but it wasn't safe to be on them for longer than 4 years so that wasn't a great solution was only temporary . I hate the idea of finding out I have it just to be told to go on another pill Xx

[JOSANDY40 in reply to Telli686]

Hi, Mine specializes in Endo. They are NHS but have private clinic as well. The drugs do help but you may have side effects. The laps help reduce pain. I've had too many with nerve damage, years of treatment, become bedded down. Eating 6 small meals a day helps. I use a TENS Machine, took a bit of time getting the frequency right but it's been wonderful. Yes the pill was difficult for me, but it got me through like you 4 years. I found excepting the disease and working around it stopped me getting stressed out. The hardest thing for me is the tiredness. I go to bed 9 to 10pm and need about 10hrs sleep. Relaxation and meditation has been calming. Also try to find a NHS Pain Clinic some have Reflexology, Alexander Technicians, Exercise Classes, mine does a discounted Council Swimming Pool and Gym rate!

Best wishes

[KatMT]

Definitely go through with it. I was in the same predicament about 3 weeks ago. My symptoms were what I would consider light, except on the first day of my period, so I was nervous they would find nothing. But, I got it done, and they found extensive endometriosis and removed what they could. The next week after surgery, I got my period and it was the least painful period I've had in years. I almost cried.

It's always good to get an official diagnosis so doctors stop treating you like you're crazy. All my scans, ultrasounds, and colonoscopies were clear and they told me I had IBS. You already have it scheduled, so you might as well go ahead with the procedure. Good luck!

[BBBOA]

I've had literally 5 laparoscopies over the years. They are a bit uncomfortable after, and the consultants undercook the recovery time, but the best thing about it, is they can actually see what is going on. I felt almost relieved when a consultant said that he really didn't expect to find anything, but he did.... Felt exonerated. I'd gone round in circles with varying diagnosis.

[Hannah5198]

I had my lap only on the 6th March. I had the same worries and concerns. My main reason for fertility issues too. The thought of being told or them doing anything that would jeprodise my future of having children was really scary.

I'm now awaiting my results and what route to take next....For me finally getting a diagnosis was a relief and now im awaiting help to move forward and learn more about the condition and what fertility routes (if any I need to take)

Before my op I wrote down all my questions and concerns. Don't be afraid or feel silly to share these.

I hope that helps.