Endometriosis UK
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Laparoscopy worries/regrets?

Has anybody thought they had endometriosis, had the lap and then told it wasn't that? Did you then regret having it done?

I've pushed for the lap for ages and now I've been told I can have it, I'm scared I've got it wrong and will regret it. I don't want to end up coming out with no diagnosis, even more questions and recovery...

Also worry that I may end up doing more harm than good routing around in there for no reason...

Is it normal to be this worried?? Or am I over thinking it! I have never had surgery before and a bit worried about that too do could just be that haha.

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I feel the same! Had longer to wait for op than expected and I’m thinking about it all the time - usually worst case scenarios. I’m so scared of operations 😩

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Hey, oh you sound so much like how I did in the lead up to my lap! It's a lot to decide and I think ultimately there's no right or wrong way to do it... You've just got to do what feels right for you. I'll share my 'story' and see if it helps.

My symptoms started 4 years ago - mostly really disabling fatigue and intense abdominal pain & swelling. My periods were normal & have never been an issue. I was tested for all sorts of autoimmune & stomach related things and nothing was found. Then in Dec 2015 a new GP suggested blood test & ultrasound. I was told I had 2 large fibroids and my CA125 levels were raised. The GP told me I was showing all the signs of ovarian cancer, this was 3 days before Christmas so I had to wait weeks before this could be followed up, where I was then told by another Dr I didn't have cancer as it would've shown on the ultrasound but I could have endometriosis. They referred me to gynae. I was terrified i did have cancer and wasn't convinced by this conflicting info. I met with the gynae who was not very pleasant, dismissed all my issues as IBS but said she'd be willing to do the lap to rule out endo. I was advised by her and my GP that having the lap was not a wise decision as it's surgery which comes with risks & it could cause lesions. The gynae said she was certain I didn't have endo. But I just felt so uneasy after the cancer being brought up & wanted it ruled out so I went ahead with the lap. I had my lap and was told no endo & all was well inside and that my difficulties were psychological. I then felt like a total idiot for having unnecessary surgery. I backed off all the medical side of things and looked at more alternative options like chiropractor, Chinese medicine etc. I did a lot of yoga and my hips started to cause me pain & weren't moving the same, they kept 'sticking' and started to get a lot of bad lower back pain. I went to my gp and was referred to orthopaedics, 9 month wait later, I had an MRI, with the thought I could have arthritis but no I bloody have severe endometriosis throughout my pelvis! I was only told this a week ago, 2 years after the all clear lap, so I'm still coming to terms with it all.

I think my advice to you is that really you don't know what lies ahead and what way it'll all go. Despite what Dr's say, no 'all clear' is 100% definite and any test has an element of error within it. I think the best approach is to be as open as you can be and to really think about what you feel is going on inside your body and use that to guide you. I always felt 'inflamed'. It was the best way I could describe what I now know is an endo flare up. It felt like my insides were inflamed, and well, they were! There's a medical approach that may help me but there's also a whole world of alternative options that can benefit me hugely. I actually didn't need a diagnosis to tell me that.

I hope what I'm saying will help and not make you feel even more confused. I think what I'm trying to say is that you'll never know the outcome of the decision you don't make. Just trust your instincts, not only in this decision but in your whole health. Really listen to your body. I think when we do that, we often do have a pretty good sense of what's going on and what might help.

I hope this helps! Xx

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I had the same psychological suggestion and IBS suggestion and my lap in November was all clear except 1 small adhesion but they are still treating me now with prostap but still no diagnosis xxxx

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I think it's just what they say when they're stumped! I'm sure anyone with chronic health issues has *some* psychological issues but it's quite harmful to just put it down to that every time they can't find a diagnosis. It's so dismissive. I've been a year in therapy now, I certainly understand myself better and I've worked through some issues but my health is pretty much the exact same 🙄

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If I had not of changed doctors surgeries I would still be on anti depressants, tramadol and mefanamic acid. I did counselling to talk through some things and I am glad I did but it obviously did not stopcmy ovaries from feeling like they were on fire and bleeding like a waterfall. I was just about to give up on perservering when my new doctor helped me to stop taking all the tablets that were not doing anything and got me referred to gyno. Il be forever thankful for that DRs support xxx

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That's awful, on all those strong medications unnecessarily! That's so good you've found a good Dr now.

The laughable thing is, I'm a clinical psychologist so if it's suggested to me that something is psychological, I'll buy into it. I could have a broken finger and I could be analysing it thinking that perhaps my pain originates from unresolved issues with my mother as she was always pointing her finger at me! 😂

Sometimes pain is just because your tissue is actually damaged! 😂

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Hahaha it sure is! Xxxx

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Fantastically well written account of your struggle- I'm so sorry you've been handed around like a hot potato. But the sense of your own control growing is beautiful. I've had disinterested docs, only interested in cutting docs and one good 'let's approach this holistically' doc. Sadly, I've moved area and my new doc has the cancer blinkers, but I am slowly improving on my own soothing dietary programme, supplements for stomach, liver, thyroid and adrenals, plus gentle movement exercise and self massage. Trusting my instincts is the most powerful thing this condition has given me, and a commitment to proper self care. That chimed with your story- I just wanted to say thanks for sharing. It made me feel more assured to follow my hunches, and I hope it does others.

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Yes absolutely! It's one thing to realise we need to really tune into ourselves but when we hear other people are doing it too, it really helps to know we're not alone (and not just a crazy crystal lover! 😂) xx

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I’m in the same boat now I had a small bit of endo found in 2014 I was told after the surgery it was only small so the surgeon didn’t think that was what was causing my symptoms but luckily I was symptom free after that. I got referred back to gyny by my gp in jan because she thought I had endo 100% went to gyny he was very dismissive but then decided he wanted an mri to look for deep endo. I’ve just had mri results which were clear he doesn’t think my endo is back again because it was so small but is sending me for 2nd lap anyway and for them to look into my bladder aswell sorry for the long story but I’m lying in bed thinking about what if it’s in my head what if I wake up to be told I was wrong and I’ll be left deflated. But on another note everyone knows there own body and most women on here even me first time round before surgery have most probably doubted them self’s at some point! I really hope u get sorted and find the reason for your symptoms. Good luck with lap xxx

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I had the same worry and my worry came true. They found only 1 adhesion. However, I am still being treated as tho it is endo with prostap injections and they work. No pain, no bleeding. So my gyno is confused but I am relieved - they now think it still could be endo but just not on the surface. He mentioned peritoneum surgery at my last appointment depending on how my next 2 injections go - it is not definite he will still suggest it again but at least he still trying to think of ways to prolong the good effect prostap is having for me.

So don't be worried about what they will or wont find - if they are good DRs they will help either way xxx

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It’s completely normal to be worried about surgery. I also hear this fear a lot on here re. not finding anything.

They wouldn’t put you forward for surgery if they weren’t confident your symptoms might be endo. It was their decision to do surgery based on their experience and assessment of your symptoms. You don’t need to worry about a thing in that regard. It’s their professional choice.

Post-Surgery:

• Please take a pillow for the car journey home. It will sit between you and the seat belt.

• You’ll be bloated and constipated after surgery which can feel uncomfortable. Try Milk of Magnesium, psyllium husk. Avoid bananas.

• It can feel very tender, like being punched in the abs, after surgery. It helps to have someone on hand to cook for you while you’re in the early days of recovery.

• The surgery itself is a breeze. You’ll get the anaesthetic, fall asleep within seconds, and wake up in the recovery room. It feels like only a second has passed between falling asleep and waking up in the recovery room, where a team of kindly nurses will be waiting to look after you.

Good luck!

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Heya, I had the same went in for a lap last year and they found adhesions, they said it was PID, I haven't had an STI so I'm not sure how it could be this, now they have ruled out infection but I'm still in a lot of pain today and fighting for a diagnosis. I keep getting told its just IBS. I'm going to ask to be put forward for a second lap with a specialist at my next gyne appointment. I know how you feel though, it is scary that they wont find anything. Hope you get the diagnosis you need :)

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Yes I feel the same too, I only get pains a few days a month and worry if I get nerve damage or sepsis etc things will be worse!! I am having diagnostic lap next week and am so anxious!

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I had my lap last Tuesday after suffering for 17 years, you can imagine how devastated I was when they told me nothing was found when I woke up in recovery. I had a complete breakdown and was borderline hysterical! My surgeon did come and see me and suggested some other options it could be. He was really nice and I think he was generally sad himself that the lap was inconclusive. I'm a very positive person and I think that has massively helped me in the last week. I have a plan of action now where I've found a endo specialist I'm going to see privately. We know our bodies and I'm not going to go the next 17 years in pain! I think my surgeon may have missed it especially as no biopsies were taken and even though my surgeon said nothing found, in my discharge notes it says I have abdominal adhesions? I'm also going to push for tests for adenomyosis. I was more worried that people would think I was being a drama queen and a liar if my lap was clear as its taken me this long to finally be taken seriously. However I keep telling myself this level of pain 2 weeks out of my cycle is not normal! Let alone when my actual period comes! New symptoms have been appearing in the last year too (my periods have now gone very irregular whereas before they've been like clockwork since I started them at 9). I haven't been using contraception either for the last year and we've had no little 'oops', so I am worried about my firtilty especially as my mum has the exact same symptoms and had multiple failed IVFs. She was told she was extremely lucky to have me and my twin sister. She tried to conceive again but it never happened. You may have your lap and they may find something but there is a chance they may not find anything and prepare yourself for that situation. If it does happen that they couldn't find anything, don't give up! I've read countless stories of nothing being shown up the first time round and then find it everywhere the second. Also do as much research on your surgeon, I'm kicking myself I didn't go straight to a specialist and I had a few alarm bells ringing when my surgeon said only 30% of his surgeries he finds something. My journey is not quite over yet and I'm not resting till I find an answer! Good luck xx

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I had a round of abdominal pain. A general gynae did a lap and said I had adhesions latched to my bowel pulling it out of shape and that had caused the pain. He said they can just develop and cause problems!

Cue a couple of years later and more abdo pain, a specialist went in and found endo in my Pouch of Douglas, adhesions and pelvic congestion. He said the adhesions are caused by the endo bleeding and causing this scar tissue to develop. He also said that a general gynae would have been likely to have missed my endo, it would be very unlikely for me to have developed it after the first lap.

Now 2.5 years on I have pain back and am waiting for an appointment with the specialist again.

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I totally understand how you feel! My lap is scheduled for next week and i’m So nervous. I was referred to the gynae by a dr who was reluctant to refer me in the first place when I told her that another Dr had suggested endo. When I went to my gynae appointment I was told my symptoms didn’t present as endo but he wasn’t sure what else it could be so if I wanted a lap done I could do. I’ve never felt like such a drama queen in my life- although i’m In pain every day and the only explanation anyone’s given me without diagnosis is possible endo. I feel like i’m Going around in circles! Once my lap is done next week i’ll Update you!

Good luck!

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I had my lap last week- they didn’t find anything abnormal. I was okay with that at first (probably because I had so much general anaesthetic and painkillers that I was quite happy!) but a couple of days after was quite upset that they didn’t find anything because it just means that there are still no answers to my symptoms.

Having said that, I don’t regret having the procedure done at all- I was really nervous about it but it was quick and pretty painless and the recovery has been quite quick too! It’s good I suppose to rule out endo because if you didn’t have the laparoscopy there would be no way of knowing😌

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Oh my I had exactly the same situation a few months back and I ended up freaking out and cancelling my booked lap for exactly the same reasons! I admit I totally regret my decision, I now think it would have been wiser to have a look even if just to rule it out, I now must go through the whole process again to fight for them to reconsider giving me the lap after I backed out! Don't make any rash decisions like I did xxx

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You may have made the right decision. My Lap caused a hernia and now I am in even more pain than before I had it. Your instincts may have been right. I wish I had listened to mine. x

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Yes! I had a lap 2 years ago and the doctor said that my ovaries were completely normal and I had no gynae problems.

10 months later I saw an endometriosis expert and he told me I had a 6cm endometrioma on my ovary.

Best of all the lap caused a hernia and now I need another operation to repair the hernia. I have been in constant pain for the last 20 months because of hernia. I really regret having the lap.

Surgery should not be taken lightly. The ultrasound results should guide you as to whether you need surgery or not.

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I’m just recovering from my lap last week. The consultant was sure I had endo, and so was i. She didn’t find any endo, or anything else.

I had mixed feelings at first as I did feel almost like a fraud to be honest post op. But i’m happy now that it’s not that, and we can move on to looking at anything else and a management plan. Before the lap I felt in constant limbo.

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I've just had a lap about 2 months ago and was told I had the all clear and they thought it could b something to do with my bowel.

I 100% am so glad I had it. It's so important to know what's happening in your body and it gives you piece of mind.

If something is wrong, you'll know and hopefully they can fix.

If nothing is wrong, you'll know and you'll feel better before you know it. The recovery is much better than I thought! X

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Laparoscopy is the only way to definitively diagnose endo so if you suspect you have it then you need to have one. That's it. It's not really a choice. I've had 12 laparoscopies, all for endo, and they're really not that bad. The actual surgery part for you is simple- they knock you out, do what they're doing and you come round, that's it. If it's just exploratory it's not that painful and you'll be back to normal in a week or so. I've been back at work 4 days after one of those. One of the most uncomfortable parts about a lap is they use gas to inflate your belly- while they 'deflate' you afterwards some does collect under your diaphragm which will irritate a nerve that you'll feel under your shoulder blade- very strong mint tea is your friend here, mint tea, mint oil capsules, basically just mint, mint, mint. And a hot water bottle on your shoulder. If they excise it at the same time then that's a bigger deal- you usually get signed off work for 3-4 weeks with that. They should discuss with you first what the plan is anyway. There are loads of things you can do to help yourself get over it. Firstly, although it's tempting to put your pjs on and take it easy on the couch for weeks on end, this won't help. You're not ill, as such, you're injured and recovering. Give yourself a couple of days of that but as soon as you can you need to start walking- I'm not talking hiking up a mountain, just make sure you're moving about as much as you can- it's really more a shuffle to begin with. This helps things to heal by keeping your blood moving and prevents you getting too stiff but most importantly is crucial for avoiding constipation, which is absolute not what you want at all, but is a side-effect of anaesthesia and of opiate-based painkiller (morphine and codeine).

If they think your bowel is involved they may give you an enema or an industrial-length laxative (bowel prep) before the surgery so your bowels will be feeling strange anyway. They also get moved around a lot during the lap so there's that too. Drink A LOT of water (small amounts regularly- your bladder will feel bruised and you'll probably have had a catheter too which puts you at risk of a UTI, so aim to pee small and often), eating things like cooked/stewed apple and tomato and soup can help too. Also, alternate your painkillers so you're taking your NSAIDs at say, 8, opiates at 10, NSAIDs at 12 etc- this will give you better coverage. NSAIDs work better if you take them regularly, like you would antibiotics- because of the constipating effects of opiates try to rely on these as your mainstay and opiates as a plan B.

The external incisions are tiny- you'll have cut yourself worse in a kitchen accident- but they do go all the way in so make sure you keep them clean and follow the advice you're given about bathing/showering (they heal pretty quick though and the scar is something akin to an old insect bite), and sex (you won't want it anyway). You'll feel generally bloated- loose, drawstring, jersey pants are your friend here. Not leggings because they're too tight round your hoochie and it'll get irritated- it'll have been manipulated enough during the procedure. You'll need to wear a pad/sanitary towel for the first few days- again, big knickers are essentially really. You know like boy shorts?- buy some the next size up to what you usually wear just for this.

If you've not had an anaesthetic before you won't know that it's normal to find your sleep patterns disrupted- I always find a day or two after I've got bags of energy as if I've slept for a month- try and have something to do to fill the time, recovery is boring as hell and you'll find yourself awake/asleep at weird times. It also helps to make a distinction between day and night- my way is to wear clothes in the day and only put my pjs on at night, you need to keep a regular pattern to your days if you're going to be inactive for a long time and this is the easiest way of doing it. They can make you weirdly emotional as well- a lot of people I know say they're teary after a GA, I know I am.

Basically, don't worry. It's a very, very commonly performed op and the people doing it will have your best interests in mind the whole time. With a bit of preparation (shopping for food, comfy clothes, books/crafts, films, whatever you like to occupy yourself with), it's a slightly uncomfortable, drug-addled few weeks (or just a few achy days if it's just exploratory) and you will know one way or the other. There's no other way to diagnose it. I know how frustrating it is when they tell you everything's fine and you know it's not but that doesn't mean they won't continue to investigate, or potentially treat you with a drug/hormone anyway- for some people the deposits are literally microscopic so they just go with the assumption that it is endo. But honestly don't be scared, it's really not as bad as it seems.

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Stop worrying and just do it ;) I am in the same boat, I went through 3 gynaecologists who didn't diagnose me with endo, and my fourth and last one was excisional specialist gynae who said I do have endo stage 3. I also went to numerous other specialists with no results. My operation is in June, and I don't have private health cover, so ill be self funding it, I know it is a risk but best knowing than not, and I do know a 100 per cent if it's endo it will be found, as I picked a surgeon specialising in this field, all other general OBGYNs are not good for your first surgery as they have very limited knowledge of endo. Best of luck, x

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