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how long is relief from symptoms after a laparoscopy?

Purpleperdy profile image
17 Replies

my daughter is 16 and was told she has endometriosis in May. We have had 3 hospital admissions since and she is waiting for a laparoscopy. She is at home, probably about to be kicked out of college as she can hardly attend, and on morphine for the pain. We are considering paying privately to speed up the op but do t know how long to expect her symptoms to ease afterwards. I know it will be different for everyone but is there a ball park period? If it’s only a few months we will wait as then she will be just as bad for the new college term but if it is a couple of years for example we want to do is asap as she is in agony.

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Purpleperdy
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17 Replies
Twintwo profile image
Twintwo

When I had my laparoscopy done they could only remove the cyst on my ovary - they then confirmed I had stage 4 endometriosis but were unable to remove the endometriosis as it was on my bowl and bladder and pelvis . So I would say it depends where hers is! With this though they put the mirena coil in - whilst this has not helped with some of my symptoms ( I suffer with a lot of bleeding) it did elevate some of the pain and helped me continue with day to day life - I still have bad days where I don’t want to leave my bed but this definitely has helped so could be worth exploring! The surgery it self I recovered within about 3 weeks! Hope this helps xx

Purpleperdy profile image
Purpleperdy in reply toTwintwo

Thank you

Pinkpetals123 profile image
Pinkpetals123

I started at a very young end missing education and I got advised the coil and for a young girl it’s scary but it had made a huge difference I really could not live with out it I still have flair ups but nothing conpaired and I worry if when I get my new one it won’t be the same but it really does help people the lap surgery is tough and really hard and it helps though

Purpleperdy profile image
Purpleperdy in reply toPinkpetals123

Thanks for that, nobody has mentioned the coil so I will ask about it.

FriesLover profile image
FriesLover

Hi I had laparoscopy in June 2023 and they said it is Endo stage 2, unfortunately next month all the pain come back with the same intensity. From that time until now I am waiting to see Gynecologist and using mini pill to control the pain. Every one is different, good luck!

Lofty1589 profile image
Lofty1589

It’s a tricky one. It definitely depends on the skill of the surgeon but it is also dependent on our bodies. I had widespread stage 3 excised in Feb this year and whilst my pain dropped slightly, I still have all my other symptoms. However, I do also have Adenomyosis which could be why.

Bumblebee11 profile image
Bumblebee11

Hey :) I was diagnosed when I was 21- had everything removed, had twins, and over the past 3 years it has come back with a vengeance. But I would say I had a good solid 3-4 years without horrific symptoms when it wasn't a period x

Purpleperdy profile image
Purpleperdy

thank you all, as suspected it could be a few months this or a few years. It’s so awful to see her in so much pain with not much hope. I will push for the lap asap and see how she gets on. Your replies are much appreciated, we feel completely lost at the moment.

16yearsofpainsofar profile image
16yearsofpainsofar

How does she know it's endometriosis if she hasn't had a lap yet? I'm too scared to have a lap but it's strongly suspected that I have endo. I have a similar condition called adenomyosis and the mini pill has worked for me. Maybe get her on the mini pill and try different types if one isn't working for her. There's also the coil but they might not give it her as she's still a child.

Purpleperdy profile image
Purpleperdy in reply to16yearsofpainsofar

Hi, she was admitted to hospital and they found a burst ovarian cyst and that her other ovary is fused to her uterus. This combined with her other symptoms has led 2 consultants to tell us it is Endo. We are on Pill number 2 and she is still bleeding through this one. We have another month to get through and they will try another.

16yearsofpainsofar profile image
16yearsofpainsofar in reply toPurpleperdy

She'll need a lap to confirm endo as she currently "just" has endo-like symptoms. If the only side effect from the pill is spotting then it's worth persevering. I tried so many different pills because I had horrible symptoms. Currently found one that is great for me. I do spot, but I'm not constantly in pain which is a major plus!

Purpleperdy profile image
Purpleperdy in reply to16yearsofpainsofar

Yes, currently waiting for one. She doesn’t just spot she bleeds heavily for weeks at a time so that combined with the pain is a nightmare. Just wondering whether to try and hurry up the lap as if she is only going to get relief for a short period of time then by September and the new college year she may be in the same pain position as she is now and still not able to go.

16yearsofpainsofar profile image
16yearsofpainsofar in reply toPurpleperdy

Which pills has she tried?

ClaudiaGrace profile image
ClaudiaGrace

Hey, are you under an endometriosis centre? As they collect data on things like this so if you call they should be able to answer this question with more scientific validity than us. From my personal experience I felt relief as soon as I recovered from the surgery pain, which was maybe a month max but then the symptoms crept back in after 6 months, but I only had superficial endo and the evidence base for surgery on this isn’t great.

I have read about a lot of peoples experiences with surgery on here whilst deciding whether to have mine again and from what I’ve read I don’t think it’s the case that it will take years for her to feel the effects. I think it does tend to be if you’re going to see a benefit then it’s once you recover which can be more like 6 months if it’s a more involved surgery but then as people have said it can come back, I think some stats suggest something like a 50% chance in 2 years.

There are however medical interventions which can suppress the condition as people mentioned the coil but also medications like deinogest I take. Also life style adaptations make such a huge difference for me and I’m so gutted no one mentioned them to me 3 years ago as I genuinely think I could’ve avoided it growing back if I’d known. The book heal endo details a lot of this, would recommend but generally increasing the amount of anti oxidants she’s eating, decrease inflammatory foods, exercise regularly and practice pelvic floor stretches and deep breathing. I can control a flare up with these changes, worth doing while she waits for surgery either way.

Purpleperdy profile image
Purpleperdy in reply toClaudiaGrace

Brilliant suggestions, thank you.

NicJM profile image
NicJM in reply toClaudiaGrace

Hi Grace, sorry to jump on post - how are you finding deinogest & how long did it take to help? Tks

ClaudiaGrace profile image
ClaudiaGrace

Hey Nic,

I find it fine to be honest, it was a while ago now so not sure exactly but I definitely noticed by the 3 month review that it had made a difference. I’m not convinced I’ve continued to benefit from it to be honest but I’m too scared to stop taking it. I also do think it may have created some fatigue but that could also be the endo.

Sorry not a massively helpful review, but it deffo reduced my pain for 6 months to a year and may well still be doing so it’s just hard to say as it has still progressed I think.

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