Has anyone else's endo grown back quickly after operation?

Just wondering if anyone has had a laparoscopy, had endo lasered but never actually had any pain relief since the operation?

I had an operation to diagnose and remove endo in August 2014 and since it has taken place I haven't actually had any pain relief whatsoever. It makes me think that maybe they missed some?

I have a hospital appointment on Tuesday, it was originally to have the coil fitted but I am going to ask if I can book in another operation first because I am sure it is still there/has grown back. The pain is getting worse. They found most of the endo on my right side which is where I got a lot of pain (in my hip and lower back) and that pain has come back quite badly recently. She did give me the option of having an operation and then the coil being fitted at the same time or trying the coil first but now I have changed my mind and would definitely like an operation to get rid of any that has grown back, if it has... I would be shocked if it hasn't!

Has anyone else had a similar experience?

28 Replies

  • Hi

    Endo should be excised (cut out). I didn't have any relief after having laser surgery in 2011. It's possible that some endo was missed if your lap was done in general gyne?!? In my experience the coil only helped with reducing bleeding. Most women's periods stop completely on the coil but mines never did (I had 3 coils). x

  • Hello :)

    My lap was done at the hospital. She said it is a mild case so there wasn't a lot there so she lasered it. I asked why I get so much pain if my case is mild and she said every woman is different - some can have an extreme case of endo with no symptoms and some can have mild cases with a lot of symptoms! Did the coil not help with any pain at all for you then?

    I just keep taking painkillers after painkillers and it surely can't be doing any good to my body! I am trying to find other ways to help the pain such as altering my diet and trying yoga!x

  • Yeah mine was just minimal too. My pain was worse with minimal than widespread. It was half way through my 2nd coil my symptoms started so in my case the coil didn't do anything for the pain.

    I stopped taking medication in 2011 it wasn't doing anything, resorted to breathing exercises, meditation and heat, I very rarely take painkillers now only when the pain is extreme. I have a high pain threshold or have just learned to live with it.

    I changed my diet almost 2 years ago after intolerance testing. I have to be very careful with what I eat. Also gave up alcohol a year ago that helps too x

  • That is rubbish :(. Yes I try to not take too many painkillers, only when the pain is bad. It is just unfortunate that its been bad for a while now so I am forever a zombie. I am not a massive drinker anyway but I tend to avoid alcohol because it causes me so much pain the next morning, the flare ups are not worth it at all! I am on a gluten free diet which definitely helps.

    I just hope my hospital appointment is successful on Tuesday, I don't want to look like a baby but I am taking my mum in with me! I just feel that sometimes the consultants will try and push you to doing other things that you don't actually want and then you end up coming out of the appointment unhappy. At least with my mum there I can be firm about my decision and if I can't then my mum can!x

  • I always take someone with me now, it's always good to have someone to back you up and give you support. Best of luck with your appointment, let us know how it goes x

  • That's what my mind logic is too at the moment. Thank you, I will do :) x

  • hey there,

    after my lap last october, i got diagnosed with superficial endo basically allover my sexual organs and urinary tract and ligaments holding them together. i had my 10 week post op appointment, where my consultant, no word of a lie said:

    -i should no longer have endometrial pain it MUST be something else , ive had the operation so it HAS to be gone! (therefore put me on super high painkillers that turn me into a walking zombie!)

    -when i asked to see a dietician to help me cut out gluten,dairy,caffeine and sugar, i get told food and drink has no positive correlation with endometriosis (but dont drink tea because that irritates your insides) [i know right hypocrite much?]

    -there is no missed endometriosis, because thats not a possibilty you know. theres no such thing as human error anymore... silly me.

    -there is no chance of it growing back this quick because the quickest it can grow back is 5 years! [also bull]

    so yeah get a second opinion sweetie coz im doing the exact same thing! half the doctors dont really know anything about Endo, so we have to become self-proclaimed experts ourselves to get anywhere. im only 20 and ive been battling the nhs by myself since i was 15 because my parents arent bothered so long as they're okay.

    things ive found to be massively helpful are:


    essential oils -making own toiletries/beauty products/cleaning products, aromatherapy

    natural remedies- the only pharma ive found that helps is the Pill but there are even natural solutions to keeping progesterone levels high.

    the handiest tip ive ever had as well is to take painkillers and things BEFORE the pain hits you hard. and find natural alternatives to ibuprofen, turmeric is a god send.

    i hope you start to feel better soon!

    have a pain free day :)

  • I am sorry but the doctors are SHIT! They have been no help to me whatsoever. I started getting pain on a daily basis when I was 13 years old. I am now 23 and it took A LOT of pushing to get diagnosed.

    I am really considering getting a second opinion or asking my GP if they can refer me to an endometriosis specialist because even ay my appointments with my consultant at the hospital, she says things like 'it's not like its cancer' or 'have you read up about endometriosis, here is a leaflet' just irrelevant comments and also.. of COURSE I have read about endo! What a stupid question.

    Sorry, I guess I am holding a bit of anger about it all!

  • Hi Hun I know what you mean about gps. It's taken me nearly 30 years to get a diagnosis as no GP would listen. It was only when I had been ttc for 4 years and a new GP started at practice that I was sent for ultrasound. Where it was discovered I had a 6cm endometrioma on my left ovary. Because things have now got so bad inside and due to suspected adenomyosis I'm having a hysterectomy, ovary removal, excision and possible bowel resection on 3rd March. Please , please get a second opinion from a specialist it really does make a difference. Good luck .

  • I'm so sorry to hear that, bless you xx I will definitely look into seeing a specialist!

  • yeah they are!

    when i was about 15 i got awful stomach pains, since then ive been diagnosed with every stomach problem imaginable, and been treat for them all too, obviously to no avail considering i didnt have any of the illnesses i was diagnosed with. i moved to a new area and got a new GP who was absolutely fantastic! she got it in the first appointment! now though its the hospital and the supposed "endometriosis specialists" that are spouting all this shit!

    if getting a second opinion doesnt work then get in touch with the primary care trust or even a solicitor about neglect. at the end of the day it might be a name on a piece of paper that has nothing to do with them so they dont try that much. but 5 minutes of their undivided attention could be life altering for us!

    if i hear "its not cancer though is it" from a doctor or regular person again. im going to stab them! i swear it! parkinsons, MS, HIV, ALS are not cancer either, id like to see people say something along those lines to them!

    dont apologise, this is the one place where every person you speak to is going through the same or similar things to you. its the place you can rant and let out the pent up anger about how your boyfriend doesn't understand that sometimes you just cant get out of bed and things :-) x

  • It's soooooo frustrating isn't it?! And they make out like your just making this stuff up and 'it's all in your head' and 'it's just growing pains ' bullshit lines like that! I always feel stupid when I complain about endo pain around people because they just probably think it can't be that bad. But it really is! It's so draining as well, today I have been so exhausted from it. Currently soaking in a nice hot bath right now! I honestly, honestly need something else to relax me. Anyone else know of anything to help the pain in a natural way? I'm trying yoga next week x

  • Ah the amount of times I've heard it's all in my head and "endometriosis, it's just bad periods isn't it?"

    Yeah and cancers just the occasional lump in your body.

    Chronic fatigue is literally the bane of my life, walking up and down the stairs and just simple tasks absolutely wipe me out, normal people who don't understand just think it's laziness and it pisses me off so much when they say as much!

    Yogas really good for the pain even just finding a video on YouTube or something, essential oils though should become your new best friend. They can help everything and anything. Coconut oil and a couple of drops of peppermint oil rubbed into the hurting body part relieves pain (especially good for headaches) lavender for relaxing/calming and any smell you like is good to relax :)

    Honestly though best relaxant/pain relief. Cannabis. Smoke it, eat it, drink it, take capsules/oil doesn't matter any form of it will help massively! x

  • I know it's so frustrating!!! Thank you I will try the oils. I was tempted to get some cannabis to smoke but I quit normal smoking in December so don't want to ruin that. Where would I get cannabis capsules and oil? They really should make it legal in the uk for medical reasons!!x

  • no problem :-)

    and i dont smoke normally i quit shortly after my operation, the tobacco didnt sit well with me after being under anaesthetic. so i just use cuttings from the actual plant as a substitute and it still has low forms of thc in it still too so win win. smoking only cannabis is miles healthier than tobacco too. my chest has never felt better.

    they definitely should! there are so many benefits to it the government need to stop being so blind to it.

    but capsules and oils are quite hard to come across if you dont know the right people.

    if you know anyone who smokes it for medical reasons usually older people, they will most likely know someone who sells it. you could make the oil. but it takes a damn lot to make a little. x

  • I think if I smoked it without tobacco I would be really trippy! I bet it helps so much doesn't it x

  • hahaha! its not too bad just a nice buzz and so nice not to feel all the aches and pains for a while, yeah it helps immensely its my go to when all else fails. better pain killer than morphine! x

  • Haha I guess it's worth trying then. I just know the last time I smoked I was tripping out hard 😂 Xx

  • Just to say when I last had Endo lasered and cut out I was in horrific pain from my first period onwards. These are just my thoughts but I'm guessing it would be much better if you were continuously on the pill for the first few months after surgery and so no period. Due to high blood pressure I can't take the pill. My Endo was pretty extensive. The amount of pain I had post-surgery was horrific. The consultant thought that was the case as each time I got my period Endo would be trying to attach itself to the areas that id had surgery on. So it's like a fresh wound being aggravated each time. Def get a second opinion. I found it so upsetting that after going through surgery I ended up in more pain than ever.

    Good luck with trying cannabis. I have friends who swear by it for bad period pain. For me it didn't help as I feel so sick and dizzy when Endo hits and it exacerbated that. Everyone is different tho and anything is worth trying!

  • Hiya. I did try the pill but it really doen't do my body any favours. Ive been on and off all types of different pills for years and they are horrific for me so I stay away! The pain is awful, awful, awful today. Painkillers haven't even touched it, its so hard to concentrate at work! I am hoping another operation and the coil will help, fingers crossed x

  • Yes good luck with surgery and the coil. Speak to them about preparing for post-surgery too. Hopefully the coil will help but ask whether it would be useful to take an anti-inflammatory consistently for a while post-op and obviously get some high strength painkillers for in case it's bad.

    Sorry you've had to deal with the typical crap like 'have you read up on Endo?' etc. You have to develop a very think skin dealing with stupid comments regarding this condition. Infuriating. I could write a book on it. Thank god for this forum!

    When it's bad but not horrific these are the things that have helped me:

    Dead Sea salt or Epsom salt baths. Helps to relax the muscles and so less pressure on the Endo areas.

    Massaging a few drops of lavender oil diluted in vitamin e oil/olive oil/any oil on the abdomen and back then applying heat with a hot water bottle. I do breathing exercises while doing this.

    Reducing/avoiding wheat. Reduces the bloating for me and slightly reduces pain.

    Taking ibuprofen regularly 5 days before period hits.

    Evening primrose oil/starflower daily.

  • I am really hoping the coil works! It is meant to be quite successful for ladies who suffer with endometriosis so I really hope it helps me. I just remember being in agony after my operation, and it hasn't actually helped any of my pain since whatsoever.

    Yes you do have to be very thick skinned, and usually I am but sometimes it is hard to say what you want to and be pushy in those situations and that is why I am taking my mum in with me this time!

    I avoid wheat and gluten, have stopped smoking and hardly drink alcohol and all of that seems to help.

    A lot of people have mentioned oils so I must give it a go! This forum really is great and it helps a lot to talk to other ladies who are experiencing the same things x

  • Yeah the forum is great. Essential oils are great for making you feel a bit more calm. I add them to my bath and use an oil burner too. Do a bit of research on the most relaxing and uplifting ones. Lavender is a good start. I find orange and lime uplifting in an oil burner too.

    Oh and I didn't mean I have a thick skin when I hear these comments. Wish I bloody did! I've been in tears many a time. The ignorance always takes you off guard and you're not ready with a blunt reply. Def take your mum to appointments! Anyone who has seen you at your worst will be more than ready to smack down those insensitive comments ;)

  • The past couple of appointments with my consultant I have came out the door in tears with no resolution! Hopefully that won't happen this time. Thank you 😊

  • Hey there again :),

    One thing I will Advise is be extremely careful applying heat after oil. It cooks your skin. All the skin on my stomach and all the way down my thighs look bruised really bad and started to break with too much hot water bottle usage, as it was the only thing that helped relieve the pain id refuse to not use it. I started using vitamin e oil to clear it up but the oil on my skin even hours later would permeate and then boil the blood vessels making them burst.

    As for the coil, I've had the copper coil in for years and had it replaced with the Mirena coil during my lap. So far my symptoms have only gotten worse so I don't really hold out much hope for it. I keep getting told it needs more time every time I go back to my consultant. The first time it was "it takes 2-3 months to embed and start working properly" then it was 3-4, then 6, now they're telling me I'm not going to start feeling better until later in the year. roughly around the year mark after my lap! Obviously every case of endo is different just be careful not to put too much hope in what the doctors say work. Because usually finding your own ways of relief is much better, usually other people who have it have the best remedies :)

  • Hey x yeah I think I might just use heat instead of heat and oils. The pain was really bad yesterday. It's not as bad today thankfully.

    I am a little weirded out about the coil tbh but I guess it's just worth giving it a go :/. But the fact that it's something foreign going into your body is the reason I would rather have another operation so I am examined fully before getting it put in! You can get it taken out whenever you want from your GP right?x

  • Awe I hope your okay, I feel your pain though I've been throwing up loads today barely managed to keep food down, the pains been excruciating :(

    Yeah I was a little weirded out by it at first but I was told it was the most effective form of contraception. Then I was told the Mirena coil was best for treating endometriosis, you can get it taken out at your GP so long as there's a trained nurse there, probably something you should check before you get it put in, worth giving a go though you never know it could be the hint that works perfectly for you :) x

  • Oh my god I ate loads of fruit with Nutella earlier and now I'm really paying for it. I feel so rough. So much pain and feel so so sick!! Apparently endo doesn't allow you to enjoy much. Ahhhh I hope the coil works. Hope you start to feel better soon lovely xx

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