Life after a negative lap

[Violet159]

Haven't been active on here for a while but thought I'd offer an update, maybe this might be helpful to anyone who has a laparoscopy that finds nothing. Had my lap in September and felt absolutely awful when they told me they didn't find any endo. I felt like if they couldn't identify the problem, it will never get any better. Pretty hopeless to be honest.

Almost 6 months later, I'm still in a lot of pain and dealing with really bad fatigue, amongst other symptoms. After a conversation with my new gynae after the op, my diagnosis is 'Chronic pelvic pain of unknown origin', but she agreed my symptoms are very endo-like. The upshot is, even if it is endometriosis, if it is so small/subtle/tucked away that it was missed, then I can keep using the hormonal control (I had a coil fitted during the lap and its going ok so far) as that is a key treatment of endometriosis anyway.

Getting a second opinion from an endo specialist is definitely on my to-do list, but with other health issues to deal with, finances and the whole Covid situation this is on a back burner and I've decided to settle on "unknown cause" for the time being, and deal with my quality of life. Then I'll circle back to endo later, once things are a bit more under control.

I've been giving pelvic physiotherapy a go, and its been pretty good. My physio has been really nice and knowledgeable, and so far I've managed to reduce my chronic pelvic pain just a smidge, which is good. I've also been focusing on my mental health. I'd felt really down and hopeless and eventually asked my doctor to try an antidepressant. I was sceptical at first about the idea, but I've actually found it really helpful. Even though the pain is still there, it doesn't bring my emotions down as much, and when I do have the energy I'm much more motivated to do little things like having a shower, or a little bit of crochet (crochet has been my lifeline honestly). I'm coping with the pain much better this way and no longer feel hopeless or depressed.

I'm still battling with my GP for a diagnosis for the fatigue (which has now got so bad I'm struggling with a 5 minute walk) and breathlessness, which were previously put down to endo. I just feel I need to have a name for it, like a label, just something to tell people I have when they ask if nothing else. I've moved area so with a different GP and this new practise has been pretty grim, I've barely been able to see the same doctor twice and they've been very hit and miss. Most have been considering ME for the fatigue but its slow going. Had a particularly awful phone appointment with a male GP who told me that as my tests (bloods, chest x ray and upper abdo ultrasound) were clear then there couldn't be a physical problem so it must just be my mental health 🙃🙃🙃. We've all dealt with this BS at some point eh. Even when I explained how much my mental health had improved where my other symptoms hadn't, he wouldn't budge on the issue and I wound up in tears of despair/frustration. Fortunately my mum was there too, went nuts and put in a complaint. Hopefully we can put this behind us and I'll see a better GP next time!!!

Today was a bad day, I've had a period-thing (which is how I refer to the sporadic bleeding I'm getting with the coil lol) and the cramps, fatigue and pain have been horrendous. I've sat with my heat pad, all drugged up and just waiting for it to pass. Because it will, and maybe tomorrow or the day after I'll have a better day and get something done. I'm doing lots of little crafty things to feel productive, its helping.

So overall, its slow going and its tough, and I might not be able to do the Masters degree I was hoping to start in September, but I do remain hopeful that gradually things will get better and I'll be able to enjoy things a bit more.

Long story short, having a laparoscopy that found nothing hasn't been easy, but its not the big scary end of the world like I thought it was 6 months ago.

If you've read this far, thank you! Sorry it wound up so long. Maybe this might be helpful to someone, maybe not, its just my rambling thoughts.

Take care everyone xx

[Natagee]

Hi Violet, I really hear you and can share your agony. I also have a lot of the symptoms you describe. I do have Endometriosis which was found in surgery. I feel frustrated that the Consultant just says it is something that I will have to live with.☹️. You sound hopeful and optimistic and that is good to hear. Keep going 😊 it sounds like you have a positive attitude and your creative energy is helping you. Thanks for sharing x

[Moon_maiden]

HiSorry you’re still in pain. Gynae can miss endo if they don’t know what to look for, seems far too common at times. It’s easy to find articles as backup for GP.

Is there a different surgery you can switch to? Consistency is key, I learnt the hard way.

You should request your records from the hospital to exactly what they done and said, with photos. I’ve heard similar stories and a more experienced gynae has spotted endo in the photos and original surgeon had missed.

You aren’t imagining this, scans are useless at times for endo, so proves nothing. Ultrasound showed nothing apart from three fibroids and enlarged uterus, couldn’t even get that right as there were far more.

What painkillers are you taking.

I’m currently taking Tramadol, Paracetamol and Amitriptyline and Pregabalin to try and help the nerve supply in abdomen. I get shaky and pain doing things like standing, sitting etc.

Keep pushing, endo uk has great info 🙂

[Violet159 in reply to Moon_maiden]

Hi, thanks for taking the time to reply! I can't switch GP unfortunately as the three in my area have basically morphed into one, something to do with reducing admin strain due to covid. I am however going to insist on seeing the same person from now on and going with someone who was more sympathetic.

I've sent off for my records from the lap, they should hopefully come back soon. Definitely going to get a specialists second opinion as soon as I can, as the person I had wasn't a specialist, but I don't see much chance of getting there on the NHS any time soon so I'm saving money up for a private consultation. Even if its just for peace of mind its worth it!

Currently the only thing I'm taking daily is duloxetine as an antidepressant, it can help with pain but isn't doing much for mine. It's helping me to cope mentally though. I use codeine and naproxen during flares and periods but they make things worse long term so I'm just weathering through most of it with heat pads 🙃. Its not nice but at least the physio is helping.

Thank you for your sympathy and advice, it makes me feel a lot less alone in this nightmare!! Xx

[Moon_maiden in reply to Violet159]

GP surgeries are doing that everywhere, even before covid. It saves them money, they also open sideline business such as ultrasound, not that I’m cynical 😂Definitely insist on seeing the same dr, and a referral.

That’s why I saw gynae, needed to know I wasn’t imagining it as GP’s seemed to think I was. If you do ask for a referral and save as well see which happens quicker.

Amitriptyline is used more for nerve pain these days but was originally an antidepressant, this came from pain consultant. I wouldn’t have taken it from GP due to ulterior motives, they offered antidepressants several times before diagnosis. 🤣

Stick with getting to the bottom of what’s causing the pain, it’s not there for no reason 🙂, it’s good the physio is helping.

You’ll get lots of advice here 🙂

Let us know how you get on.