Endometriosis UK

Pain has returned 1 month after lap :(

Hi all

I am feeling very low. On 27th Feb, my mother loaned me £4,500 to have a laparoscopy done privately through BMI Healthcare due to the NHS messing me around and the length of the NHS waiting list. It has now been just over a month, and my pain has returned :( About two weeks after my surgery, I started to feel amazing - it was as though all endometriosis symptoms had disappeared! Then my period came, and I have gone back to square one.

I was just wondering if anyone has had a similar thing happen to them? I'm feeling very alone, and I feel scared to tell anyone that the pain has returned as I am worried that my family and friends have had quite enough of me being in pain.

My first post-op period started 20th March and finished 26th March, and I started Lucette on 26th March to try and keep my endo at bay. I am worried going on the pill has had a negative effect. I am just feeling so confused. My surgeon said that he had removed all of the endo tissue... I knew it was going to come back at some stage, but I did not think it would be this soon :(

I hope to hear from some of you soon. Thank you xx

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Sorry to hear you are suffering 😔

I had my first laparoscopy last June by my fertility specialist who found and treated endo in pod but left some on my rectum; I conceived but miscarried.

Like you my endometriosis symptoms and pain became more obvious as time went on; they were back within a month 😔 I felt I was going mad to think it could’ve returned so quickly; my fertility specialist arranged a scan then a referral to a general gynaecologist and I had my second laparoscopy last month; it had returned to the same spot and there was even more this time; again endo was removed from pod and again endo was left in my rectum. Because it grew back so quickly and (none of the medics thought it could)my fertility specialist he has now referred me to an endometriosis specialist that works with a bowel surgeon 😊it concerned my fertility specialist it grew so fast and he thinks I’m prone to it recurring 🤦🏼‍♀️ that might be due to endo being left?

I hope for you it’s just things settling down but if you have a gut feeling something isn’t right please back it; you know your body better than any Dr. Hope it eases soon xoxo

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Hi lovely, thank you for your response.

Mine was found in similar places to you! I had Endo tissue removed from my pouch of douglas, my uterus, my bladder and the ligaments on the right and left sides. The surgeon assured me he had removed it all, so I honestly thought I would get a good few years before it returned. My heart is broken.

I'm hoping it's just my insides healing, but it seems strange that I had so much relief for two weeks, then suddenly the pelvic pain and IBS symptoms have returned as fiercely as before. I feel like it was £4,500 down the drain :(

Thank you so much. Hope you are feeling better too xxx

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You've had your lap a month ago; during the first two or so cycles it may feel like you've taken a step back as the body cant tell between endo pain and removal of endo pain, we associate it with endo pain just because of the years of having it. Your body may still be healing especially if they removed lots of stuff; it can take months to be 100%, and each cycle may still feel like it all hurts. Two weeks is usually the time you can go about being normal; so recovery from incisions and gas however there's still lots of healing internally and each person reacts differently to that.

You should see the pain start to reduce for the fourth and fifth months. Obviously if it's still unbearable after two then you'll need to go back to your docs or call your specialist as sometimes it's covered under their post op rules. Do you have a check up? Mine was at four months to review how recovery is going.

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Was he an endometriosis specialist? I’m assuming he must have been to remove complex endo. Mine laps were done by gynae and both didn’t feel safe going on my bowel to remove it. Luckily I’ve been referred an endometriosis specialist so hopefully this specialist will sort it My symptoms are awful.

Do you have a follow up soon? I ended up writing to my fertility specialist ( I’d had a very disappointing appointment with his assistant 🤬) and he took my concerns seriously ; perhaps if things don’t settle contact him via letter? I found it very effective and got my second lap 🤗

Maybe your period is coming and it will settle down; I’ve heard many ladies having a few bad periods after a lap then it improves; I hope that happens to you 🤗

It wasn’t money down the drain; you now have a diagnosis the drs cannot ignore 😘 xoxo

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Ahh they left some endo on my bowel too; said they need a bowel surgeon to do that bit. I can have that lap if I want, but I'm sooo not sure, as it's another op. I'm hoping having that bit removed will help it regrow back less. So many mixed thoughts; specialist says it's entirely up to me.

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I’m sorry you have endo on the bowel it’s not nice is it. if they offer me another lap this time with an endometriosis specialist with bowel surgeon I’ll go for it; the symptoms are so awful and it is generally is affecting my health. 😒 it is a bit annoying tbh as they knew I had endo last time left on my rectum and I had many issues with my bowels; I think they could’ve organised my second lap with a bowel specialist and when they found it there no bowel surgeon available 🙄

Only you can decide what is right for you I wish you the best with it xoxo

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Sry to hear you're still feeling horrible :( This endo is rubbish

I didn't know it could come back at different rates; they didn't say that if some was left in a patch it could come back quicker, they just said that it could get worse or it could not. So I'm all lost. I think I'll go for the second lap because then I know they've removed as much as they can. Should I ask if they can remove any additional endo they spot in other places that may have regrown?

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Apparently I’m more “prone” to recurring endometriosis 🤦🏼‍♀️according to my fertility specialist and because of that and endo being on my bowel I’ve been referred to a endometriosis specialist he knows. When he did the first lap he didn’t think it would recur that quickly and have more of it.; he only left a tiny amount 😔Personally I’d have all the endometriosis removed that is possible just to give you some relief from it 🤗 I think it varies from women to women xoxo

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Yes.Same happened to me .They removed my endo ,and seperate ed the kissing ovaries..But everything came same after 3 months.now suffering the same pain as before the laparoscopy

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I feel heartbroken as my mother loaned me such a large amount of money. I was assured that by going private, it would beat the waiting time - which it did - but I was told the procedure would be more effective. I don't know what to do :(

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Don't go for allopathic treatment if possible..Try homeo or ayurveda medicine to break down the endo deposits ,so that the ovaries becomes separate...I am also I'm the same situation..Tired of spending saved money for the treatment..Still facing the severe pain..Not able to to the job.. Depression..Don't have a single baby after 10 years of marriage...No meaning in life..Pls let me know ur updates

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I could had written this. I had my lap on 28 Feb. I thought the first two weeks were different pain wise - more like recovery pain. I was knackered too. Two weeks after, I ovulated and the pain just kicked in again. It’s not left.

I also went private and have a follow up next week - but I wanted to see if I could get better painkillers in the meantime so popped to my GP a week ago.

She contacted my consultant who brought my appointment forward and I saw him last week too - within a day of seeing my GP.

He said he was confident he’d got all the endo and adhesions sorted (and emphasised that I’m only stage 2). Of course, as I’m not a doctor and was asleep for the op, I can only trust that this was the case! I am a bit sceptical though.

He has now prescribed decapeptyl and an MRI scan which he hopes might identify any other ‘non gynae’ issues.

I feel like I’m going out of my mind... is it all in my head? Have I wasted an operation? What next? Etc etc. So I can absolutely sympathise.

Do you have your consultant’s email? I have mine and he told me to email him anytime (and indeed; has asked me to write to him to confirm the day I start decapeptyl as well as sending an update one month after I start) and he will reply in 24 hours. He won’t bill for this. Perhaps you could do the same?

Do you have a follow up appointment?

You have my sympathy... this is crap. Like you, I just want my life back! X

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It’s incredibly frustrating isn’t it. First lap was June ; I conceived but miscarried. Then my endo symptoms return with a vengeance 😳 some GPs thought it was possible others disagreed 😔I had a very disappointing appointment with my fertility specialist assistant; it was so awful she didn’t listen or take any of my concerns seriously and totally fobbed me off ; I ended up in tears and when I suggested could it be endo back she had a go at me for “dismissing “ my fertility specialist 🤦🏼‍♀️ anyway I spoke to another GO who suggested to write a letter to my fertility specialist and list my concerns ; this was my turning point 😀 he took the concerns seriously and arranged scan then a referral to a gynaecologist which gave me my second lap; it had grown back and there was more; so I wasn’t going mad! 😂 As it grew back so quickly and is on my bowel which couldn’t be removed now my fertility specialist has referred me to endometriosis specialist he knows result 🙌🏻

By the the stage bears no resemblance to the pain or symptoms of endometriosis 😘also some women are more prone to recurring endometriosis; according to my fertility specialist I’m one 🤦🏼‍♀️

If your symptoms persist go back to your GP she sounds very supportive and efficient 😀

I hope it settles down soon xoxo

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Aw thank you for such a lovely reply. And more importantly, I am very sorry to hear of your loss.

It’s a shame you had such a poor experience with some of the medics. Have you seen your endo specialist yet? If not, I hope that happens for you very soon x

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Thank you 😊

I haven’t yet ; I rang the hospital and because it’s a rare department to be referred there are many appointments this month and May so not a long wait 😀 xoxo

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