Post op advice

[Leanne102]

I'm 2 weeks post laparoscopy and I'm struggling quite a bit with feeling generally overwhelmed with everything.

I initially went in thinking I had endo in 3 main areas, but my operation ended up being 2.5 hours longer than originally estimated and ended up having the following removed:

- 4cm cysts

- lesions from both ovaries

- ovaries fused to back wall which were detached

- lesions from uterine ligaments

-lesions from pelvic ligaments

- lesions that had spread to groin and thighs

- bowel shave

On top of thst I have had the mirena coil fitted so I'm feeling a little all over the place at the moment.

I'm experiencing a decent level of cramping on one side, I suspect from the extensive work done as the majority was on my right side or from the coil itself. But I'm wondering if what I'm experiencing is normal? I'm convinced I've made a terrible decision in having the coil fitted and that it'll cause me loads of pain and discomfort down the line or I'll be worse off without it. Not to mention the absolute fear and panic of having anyone carrying out examinations to remove it.

Overall getting myself into a bit of a sorry state. I just wondered if anyone else had similar experiences, or what your experiences have been like post op and if you've had the mirena coil fitted.

Thanks!

[Mcyizml2]

Hi, I haven’t had a lap because I opted not to, although mine is all over the place too. Weirdly I don’t get much in the way I’d symptoms so I left it alone. I have had the mirina coil and found that it didn’t cause me any pain, but I did bleed solidly for about 50 days and now lightly intermittently. Apparently it can take several months to settle down. They have given me a pill that can stop it - tranxemic acid I think. I’m hoping it will stop my periods all together to reduce progression. But it’s not been any bother really. It’s widely used so I personally wouldn’t worry about it - and dead easy to ship out if you did ultimately want it removed.

[Leanne102 in reply to Mcyizml2]

Amazing, thank you!I think I'm generally overwhelmed and worrying, but this has made me feel a lot better. Its still very new so I'll see how it goes.

🙂

[Salamander88]

Hi Leanne, just to say I'm going through quite similar so wanted to send you all the best, it's not so easy! But I hope things are getting a bit better with time for you. I'm about 1 and a bit weeks on from my op and from the sounds of it some elements relatively similar to yours, though in my case I had the Mirena coil replaced not put in for the first time. Still getting cramping from it though, I think the body can tell it's a new one somehow. For me I know that the ones I've had previously have been pretty helpful overall in terms of suppressing my cycle and therefore my endo (despite the cramping I tend to get in the first few months) so I'm sort of ok with that aspect. I also have more pain/cramps etc on one side than the other and just assume it's from them having done more there/there being a bit more to heal etc. Sending you lots of hugs and solidarity! Xx

[Leanne102 in reply to Salamander88]

Hey!This is such a relief to hear, so thank you so much. Great to hear that its been beneficial for you too! It's such a lonely thing to go through and I think I'm in my head a little too much, and with it inky being a couple of weeks I need to give it time.

Hope you're healing up well and not suffering too much.

Thanks again 🙂 xx

[Salamander88 in reply to Leanne102]

Hey, you're super welcome. Yeah totally on the loneliness point, I feel the same - so hard to explain to people what it's like - and as you say still quite early days yet. I found this blog quite helpful for understanding better why recovery can be such a slow process centerforendo.com/pain-afte.... Hope you have enough support around (as well as of course the lovely community that's on here!) I'm doing alright thank you, hoping time will continue to help - hope you are healing well too, that your pain improves, and wishing you lots of strength to get through this tough time, I know you will. Take care and all the best xxx

P.s. feel free to ignore of course but if useful - I find heat pads (either electric from Amazon or microwaveable or the stick-on ones Poundland and other places sell) pretty good for the cramp type pains. Although the hospital advised me not to use them at the front post-op whilst healing to protect the scars from the heat, but I've used heat a bit on my back a few times which I think is still a bit helpful. Just sharing in case it may be some use for you too/if you don't already use these, esp whilst still adjusting to the coil (I prefer those types to hot water bottles as there's a bit less risk of them getting too hot and burning myself by accident), but have found I still need to be a bit careful of temp and overuse etc.

[Leanne102 in reply to Salamander88]

Ah fab! That's great, thank you.

It's all such a huge adjustment isn't it, and feels completely different to dealing with the condition beforehand. It's taking me a bit of time for it to sink in and not cry everytime I think about what has happened and what happens going forward, but I'm getting there and it's still early on in the journey.

I'll check those out, thank you! Been hesitant to use a hit water bottle or anything just in case, so these should work nicely!

[Salamander88 in reply to Leanne102]

Hey, yes it really is isn't it. I'm off to get some post-op symptoms checked out today - never as smooth ride as you might hope! Hopefully it will all get much easier for us both from here!Ah I'm glad, really hope they help a bit at least. Take lots of care of yourself and take it easy xxx

[EndoClaire]

Hi Leanne, sorry to hear you’re having a tough time!! I’m 5 weeks post laparoscopy but mine seems minor in comparison to what you went through! I felt that for a keyhole surgery I should be back to my normal self within a week; gyming, exercising etc. But in actual fact, going through a surgery, no matter how big or small, is still a surgery! Your body isn’t meant to know what to do and to fix itself straight away! You have been cut open and things have changed since pre-op, your body just trying to figure out what’s happened to it and heal, so give it time and don’t be hard on yourself❤️

As for the coil, I had mine put in well before being diagnosed with endometriosis and it was the worst thing I ever did! I was in so much discomfort and pain, after a month of being bed bound by cramps I got it removed. My pain was due to the coil digging into my endo, so yeah painful! Haha - but I’m so surprised they let you get it done so soon after! It takes your body at least 2 weeks to heal, so you will have still had a wound when the coil was placed and if it’s rubbing against it of course you’re going to be in pain! You poor thing, really feeling for you! I’m no expert and you should absolutely do what feels right to you, but from my experience getting the coil out suited me much better (incredibly easy procedure, they find the string and pull it out, you won’t feel a thing! Apart from relief haha). And perhaps give your body time to recover from the op before trying to adjust to a foreign object? The implant in the arm is also great for a lot of people (had that too and loved it) - otherwise maybe just taking your classic mini pill could help with endo symptoms further down the ligne. Just do what’s best for you but don’t suffer; be patient with your body and thank it for having been so strong throughout all of this! Sending positive vibes your way xx

[Leanne102]

Hi Claire, thanks so so much!! I know it's still probably too soon to be judging whether it'll be for me or not but I'm so terrified of more pain and being worse off than before. So pleased to hear it's an easy process to remove it, I've got such a fear of having any more examinations and stuff after everything so that makes me feel tonnes better.

I'll keep taking it easy and see how I go. Must remember to be gentle and look after myself.

Thank you so much, I really really appreciate it 💕

[rachelgreen22]

Hi hun !

So sorry you're having a hard time, I really empathise with you

6 weeks ago I had my first lap with removal by diathermy of moderate endometriosis and like yourself also had the mirena fitted during the op. From my experience of recovery following the procedure has been very slow sadly. I was in so much pain for the first 4 weeks almost everyday, experiencing awful period-like cramps, heavy bleeding, severe lower back pain, nausea, fatigue and general low mood. I kept in contact with my GP as I myself was also concerned that this might not be right and I had lots of tests and everything came back normal. GPs told me its just my body healing and adjusting to the coil which they've told me usually takes around 3 months for the mirena to really settle. I am now on week 6 and I have just started to feel a bit better, I am still bleeding and experiencing some cramping every so often but definitely feel some progress.

I know how hard this process is and everything you're feeling is completely valid! I am personally going to try persevere with the coil as this is what I have been recommended, but if you really don't feel you can continue with how you're feeling remember you can always have it removed! Best of luck with your recovery and sending lots of positivity and love your way, you've got this, any other questions I'll happily answer xxx

[Leanne102 in reply to rachelgreen22]

Thank you for replying! As awful as it is, it's nice to know I'm not the only one and that it's relatively normal. It's all so overwhelming isn't it! First of all having to deal with the condition itself and then the thought of surgery and the adjustment after is a totally new thing, it's going to take a while for me to adjust to it all.

Today I've had my first day of zero cramping so I hope it's going to be intermittent for the next couple of months and that's definitely more manageable.

Thank you so much! Hope you continue to feel better and slowly get back to normal! Xx

[rachelgreen22 in reply to Leanne102]

No problem at all! It really is a horrible thing to have to go through and really feels unfair at times, but I definitely take comfort in knowing I’m not alone in this! Thank you for your well wishes and wish you a speedy recovery xx

[ForABabyPanda]

they lie to you about recovery time. My first op (diagnostic only) they told me I’d be back to normal and back at work in 2 weeks: when I wasn’t okay after 2 weeks I panicked there was something wrong with me. The doctor extending my sick line told me it would be at least 6 weeks and extended my line as such. I then had to go through telling my boss I’d be off for 3x as long as I told him. It wasn’t a great time. That same GP to me the actual excision would mean 3 months off work. I had much more realistic expectations this time - I’m not sure it made the recovery any quicker but it gave me the confidence to take it more easy for a while. I took off 9 weeks on the end and phased return for 4-5. It’s tough mentally as well as physically. I will say you will probably always feel a little bit different after surgery. My organs feel like they’ve shifted and I have a pouch belly too. But you won’t always be in so much pain.

[L110]

Hi, I'm in a very similar place myself, 13 days post op from excision of widespread endo and had coil fitted. I have found the cramps so intense, worse than pre op from the endo and at some points much like labour, seems worse around 3am every day! Are you taking pain meds? They only gave me paracetamol which isn't really touching it. I'm not sure if the pain is from the coil or healing and I am starting to feel I want the coil out but know I should probably persevere. I agree it can feel very lonely, I hoped I would feel better post op but I feel worse so far!I hope you start feeling better soon and remember you are not alone.

[Leanne102 in reply to L110]

Ah I'm so sorry you're having this too!

I spoke with the women's health nurse at my gp and she was so helpful. She said pain from the surgery will likely be localised to where you've had the excision and should be expected to alst around 6 weeks, and then the coil on top for a couple of months. But cramping is unfortunately normal with the nature of both the op and the coil.

Medication wise I got sent home with some codeine and that has helps to take the edge off, I'd recommend trying the gp for a prescription if you can.

Pain wise it's been really bad the first two weeks, but the alst couple of days it's really settled down so I suspect it's going to be an on and off thing until its in your system. None of this is fun, but keep going if you can!

[L110 in reply to Leanne102]

Thanks, that's reassuring to know it will hopefully improve over the coming weeks, glad the cramping is easing for you. I saw the nurse yesterday too and she said 6-8 weeks for pain from excision to ease and coil to settle so I think I will try and persevere. Hope your recovery goes well.