Laparoscopy made everything 1000x times worse, anyone else?

[Mia843]

Hi all,

I wondered if anyone else had, had a bad experience with their laparoscopy?

I have suffered with endometriosis for 18 years ((I am 34 yes old)) (constantly misdiagnosed, gas lighted, not listened to, told it was normal period pains and to "just get on with it" - you know the usual story for endometriosis sufferers), only diagnosed 2 years ago when I had my laparoscopy performed April 22".

I was diagnosed with severe stage 4 endometriosis, kissing ovaries, 6 endo masses ranging from 4cm - 9cm, POD sitting behind uterus with endo inside and endo found reaching my diaphragm. No wonder I was in excruciating pain.

The laparoscopy, I was told by a random nurse went well, she showed me some before and after photos of my insides, but was able to explain anything to me and that the actual surgeon, doctor was unable to see me as he was busy. (Fine NHS are busy) But I never actually met the surgeon that performed this surgery until 6 months later (just as a side note for anyone thinking they will be able to talk to the person who actually cut them open, I didn't get to). When I did finally see him, he told me he removed what he could, I stuck my ovaries, flooded my tubes with tie (tubes fine) but he was unable to remove the endo on my diaphragm as it was too delicate. (So who knows what state that's in now and how much it has grown since 2022)

That first night I had a morphine drip and was able to self medicated with a button and later on I was given syringes of the stuff, going to the loo was so scary I was walking on tip toes to the bathroom to avoid any vibrations from even my heels touching the floor as I was in an immense amount of pain.

I also had a drainage bag hanging out of my left side which they told me they had to remove the next day. This was probably the most traumatic experience of the 48 hours, I had in hospital.

The next morning, I had two nurses wrenching this tube out of my stomach whilst I screamed and cried out in pain. It took them a good few minutes to actually release the thing out of me, for what ever reason it had got stuck in there and no matter the pain I expressed they continued to tug it out forcefully. Anyone going for this surgery I urge you to be prepared for this, if you wake up with a drainage bag attached. Horrific.

The week after I was in so much pain and spent most of it bed ridden. Peppermint tea is a must, as you will probably read on here by others. I drank smoothies and soups slot and stayed on the codine they sent me home with. I was never given a follow up appointment. I read online that the first two months after mat be worse when you come on your period but after that it should begin to get better. So I understood this and was prepared, but was I was not prepared for just how bad it was going to be and what is worse, it never got better. It got worse.

Every month I have come on my period since this opposition, I have been doubled over in pain, for around 5-6 days. I find it hard to breath and catch my breath because of the pain, I shake and vomit, I have even passed out from the pain.

I have been in and out of the doctors almost weekly with issues, ranging from random sharp stabbing pains throughout my body (any time of the month) which cause me to grab at the area and completely catch me off guard, I have to sit down holding it trying to breath through it until it subsided. Random chest pains and shortest of breath which have interfered with my love of running and the gym (which I can hardly do now) I have been told again and again " it couldn't possibly be from the surgery" even though I never had any of these types of issues or pains prior to the surgery. I get these nasty pains in the top of my legs it almost feels like intense growing pains and I find it difficult to straighten my legs out sometimes because being in a fetal position is more comfortable for them.

I have had to cut down my days from work to 3 days, and working as much as I can from home when I can, which is obviously having a huge financial impact on my life. I have become increasingly hormonal and emotional since the surgery and have crazy mood swings which I try so hard to control. I am fatigued by the constant pain and anxiety that each month brings. Mentally it has been awful.

Last week I was admitted to A&E with intense pain on my right side (outside of my usual cycle pain) I was given blood test, urine tests and finally some internal and external scans (amazing lady who did them, very informative and friendly). But unfortunately the scans now show I have not only endometriosis but also adenomyosis, kissing ovaries (one ovary 7cm one 6cm) 5 large masses largest 11cm, my bladder and womb have been shifted to the far left and do not have enough space to function properly which is why I have been having issues registering when I need to pee, as I feel I have a constantly full bladder and need to go so frequently with only a small amount leaving me.

They wanted to book me in for emergency surgery but I am getting married in 8 weeks and didn't want the recovery time to ruin that. Although I am so overcome with worry that I am going to have a flare up over my wedding, I cannot risk complications and missing it completely. They have booked me in for the 15th July and said I really have no other option and this needs to be sorted as soon as possible.

I am so nervous to go through this all again and await the outcome. It is with a new team in a different catchment area as I have moved house since the last surgery, so my only hope is that this surgery will be different. And I might experience some relief...

Has anyone else had a bad experience the first time around? Any suggestions, any help? I am so worried I will end up even worse off and I'm not sure I can deal with that.

Thank you for taking the time to read this, and I hope all you strong women out there, suffering too, find your peace and pain free journey much easier than mine.

Side note. I take a combination of: (depending on what's pains/issues are going on) tranexamic acid, mefenamic acid, ibuprofen, codine/ tramadol paracetamol, naproxen, Diclofenac sodium, Propranolol (for the anxiety) Omeprazole. Personally I find the naproxen and codine are usually best, for me.

But the best thing for pain relief I've found- absolutely scorchingly hot, hot water bottles!!!!!

[MummytoM]

Hey sorry to hear you’re suffering so much after surgery☹️ my laparoscopy also made things worse my periods are now much more painful and heavier since the surgery and I get excruciating lower stomach/pelvic area pains and pain in my bum too but back to square one now and will have to get more ultrasounds and MRIs for them to tell me there’s nothing there😒

Wishing you the best with the wedding and hoping you don’t have a flare up🤍

[Mia843 in reply to MummytoM]

Hi MummytoM,

Thank you so much for your reply,

I'm sorry to hear you are suffering too. I hope you find some relief. Xx

[moonghost]

I’m so sorry that you’ve gone through all this, it sounds nightmarish. And your wedding so soon - wishing you and your partner all the best.

Personally I found surgery to be a mixed bag, especially the second one I had last summer, and like yourself my surgeon did not talk to me afterwards to explain what he’d done.

Your pain levels sound totally unreasonable, and I’m no doctor but I expect scarring from your lap is playing a role here, along with active endo. Mine also came back very rapidly, in the same places and more.

I went to see a pelvic specialist physiotherapist recently (out of pocket) and she was wonderful. She showed me how to release my scar tissue and exercises to relax my extremely rigid pelvic floor and hips. I didn’t realise my whole body is lopsided from tensing to protect myself from pain until she pointed it out in the mirror when I sit and stand.

Duloxetine has been extremely helpful for outside of cycle pain, and the emotional toll of periods. I take 60mg.

I also discovered the extreme pain outside my cycle was triggered by gluten - some of the worst pain I ever felt came after meals and I assumed it was from my bowel endo, but since I cut out gluten two years ago I’ve never had a level 9-10 endo pain moment again. It still grew, damn thing, but the pain was nowhere near as severe. I sound like a broken clock but as someone who had no actual gastric issues with gluten, it only affected my endo, I feel I have to recommend at least trying it 🫣 Caffeine and sugar also big triggers for pain. Found I can tolerate one green tea a day, but anything stronger and it starts up.

Hopefully some form of meds/diet change can help in the upcoming weeks? Best of luck to you.

[fl0w3rbloom in reply to moonghost]

i get the exact same thing with gluten ! it’s a nightmare 🥺😭 bless you 🫂💕

[Mia843 in reply to moonghost]

Hi Moonghost,

Thank you for your kind message,

Oh dear, your second one not great either, this is what worries me. And then just the sheer neglect to even speak with you about it afterwards...

I'm sorry to hear you are suffering too, thank you for the pelvic specialist recommendation, good idea.

Gluten doesn't seem to set off my flare ups, however I very really eat gluten, which might be why. But I will cut it completely just to see. Caffeine and sugar are a complete no no for me too. So sad isn't it!

Thanks for the support and wishing you the best with yours.

Xx

[fl0w3rbloom]

bless you mia ! i’m so sorry to hear this that you’ve been through. i really hope you find some relief from this next surgery. you’re so strong. i had my lap last saturday (20th) and i’ve been in excruciating pain since so i resonate with you. i’m dreading my first period 😖 but just in terms of the symptoms you describe, i’ve been having those upper thigh pains that feel like growing pains for over 10 years and i find the mefenamic acid works really well with that. i saw you take that as well and eating non inflammatory foods as well has helped me keep my symptoms like that at bay. i stopped eating meat, diary and gluten and it definitely hasnt taken away the symptoms but things like those leg pains it’s definitely dulled that pain a bit. i’m sending all my love your way 💕💕

[Mia843 in reply to fl0w3rbloom]

Hi Flowerbloom,

Thank you for your message,

Oh nooo I'm so sorry to hear this, I hope the pain subsided quickly for you and you have a speedy recovery. this is the first time I've heard someone say they also get the "growing pain" type pains. This made me feel less alone in that. Thank you. Mefenamic acid I Def find is the best for this too. I've also been vegetarian/ no diary for 12 years now, which from what I understand is maybe a good thing (diet wise). Definetly lots of turmeric, black pepper garlic rich foods in there too. Will cut out gluten altogether and give that a go.

Thank you, and good luck to your recovery and future ahead xx

[fl0w3rbloom in reply to Mia843]

no problem at all, thank you too yes it definitely makes things feel less alone bc idk anyone else who gets the leg pains 🥺 that’s so amazing i’m vegan too it definitely makes a difference im sure.

same for you lovely 🥰💕

[KittyTherapy]

Hi, I'm almost 7 weeks post op. It's too soon to feel the true results but I thankfully don't feel worse (once I got over the 1st week post op). I've read that the way endo surgery is done can matter. There are 2 surgical routes - ablation and excision : Ablation therapy is effective for superficial endometriosis but isn’t as effective as a treatment for deeper endometriosis. Ablation vaporizes the top layer of tissue but won’t address deep infiltrating endometriosis. Excision cuts out the endo.

I've read that if you have a lot of endo adhesions then ablation surgery can actually make it worse as it can accelerate more scarring (adhesions) during the healing process.

You may want to look into a referral to a BSGE centre for an expert opinion on further management/ treatment: bsge.org.uk/centre/category...

My gynae also recommended the mirena coil for pain control so I had that placed during my lap. Again it's still early on and my periods will take time to sort of level out but so far I'm not in as severe pain as before.

Hope this helps and that you can find some relief and improvement in your quality of life x

[Mia843 in reply to KittyTherapy]

Hi Kitty therapy,

Thank you for your message,

Glad to hear you are not feeling worse at this point, that's a good sign!!

I'm not 100% which method they chose to do, as I just had zero feedback afterwards, I'll see if I can find out, and it'll definitely be something I'll be asking for the next one. So thank you for that info.

Yes, I've also read the same. It's scary that it's still the only real option the NHS go to when it seems to exasperate the endo symptoms for some people.

I will have a look into your link, thank you for that.

Yes I was offered the miera coil too, but I've had a bad experience in the past with that and I'm just not sold on the idea at the moment. Maybe I'll revisit the idea after this surgery though... Difficult.

Thank you and good luck to you xx

[635703]

First thing you could do is pop this all in an email to PALS. As a complaint, they’re pretty good in listening and helping to speed things up. You could also ask to see a Medical Psychologist for some support. Mine is fantastic. PALS might be able to get an appointment for you. You can ask.

Secondly, financially there is a DWP benefit called PIP. Go onto the DWP website find the phone number, ask for a paper copy of the form. Next google Disability Direct, Derby. They are a charity who help with PIP forms for free. It’s all done on the phone, it’s confidential. Anyone from anywhere can get their support. Ask to book an appointment with Alison, she can help you understand the questions and what they are looking for.

Citizens Advice do the same but I found in my area they had no appointments.

Your claims is backdated to when you submit the form. So it’s important with the expense of the wedding, not being able to work the same hours that you do this an both an important and an urgent task. Keep a photocopy of the form and send it recorded delivery. If they loose the form you have to submit it again.

I hope this helps you practically in all you’re fighting for. We are here. You can ring the endometriosis.UK helpline for emotional support. Do check the website for their opening hours before calling.

I have my own story, which I won’t share right now. On the practical stuff, you can DM me. All you’re going through is really hard, valid and real. I hear you. You’re not going crazy, feeling terrified, exhausted is all a normal human response. A lot of us are on that rollercoaster 🎢 with you. This disease can be devastating throughout our journeys at points. I feel especially sad that your first lap has made things a 1,000 + times worse for you. It’s a very distressing situation you’re in currently. I feel angry on your behalf that you had no chance to talk to the surgeon after your first lap.

I’m so sorry that Drs and medical people have traumatised you. We deserve better. You deserve better.

I’m so thankful that EndoWarriors run to raise funds for Endometriosis.uk. That seems an impossible thing for me to do right now. I have some hope in me that I can chuck my walking stick and get to run someday ☀️ ☺️

[Mia843]

Hi 635703,

Thank you for your incredibly helpful message,

I will certainly look into the PALS. Thankyou.

I did actually apply for PIP back in May last year, it was denied, I sent through a mandatory reconsideration which was again denied. I was so angry and felt completely invalidated. So I have appealed to the tribunal. I received a letter yesterday requesting more evidence so I have submitted a request to DDD and to get an appointment with Alison. Thank you so much. I have also request a letter from the doctor £50!!!!!! For this. One from my manager and my partner. I have new scans from the hospital visit recently. My paper work for the new surgery booked, prescriptions, I'm not sure what else more I can submit, along with explaining in detail what I go through day to day, which I did previously and it was denied. It's so disheartening when you genuinely need help and you are denied.

Fingers crossed I can put together a stronger case for them this time as it has got far worse from the time I submitted initially.

Thank you for your kind, supportive words, even reading that made me feel better and less alone. I'm sorry to hear you also have your own story and I hope you manage to find relief from the symptoms as much as possible.

I wish you all the best and I hope we can both do an endo run one day! ☀️

Xx