The million dollar question

The million dollar question today for me is whether to go ahead with a Laproscopy and then if needs be get the procedure done at the same time.I have been reading a lot of your experiences and they are a bit scary to say the least. So my question is does getting it treated via op prove better than the all day pain I endure right now.

Don't get me wrong I am in a lot of pain right now all the time, I just keep reading how it comes back twice as hard and how people get back aches after the op...so I am very skeptical.

If anyone can shed any light on this It would be brilliant

thanks

16 Replies

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  • That is my million dollar question too. I can't find many accounts of people having a lap done and being 'cured' although there must be plenty of people out there like that, since it only grows back in 35% of cases or something - going by some research I read. Perhaps the people who have it successfully treated don't hang around online forums??

    I do think that if I were to have the lap, I would also want the treatment done too. Just because you're under GA... But whether to have the lap done in the first place, I've no idea.

    Sometimes I read of people feeling worse and having more pain after the lap. Were these people operated on by experienced endo surgeons, I've no idea. Probably who does the op has a great bearing on it.

    And then many people have the lap and a few months of relief and then it's back again - as bad or worse than before. And then you're like - what's the point!? And then there are people who've had so many laps and are in pain, and you don't know if that's because of the endo or all the surgery.

    It would be good to hear accounts of people who have had a lap and were 'fixed' by it. That might restore my faith!

  • That is my million dollar question too. I can't find many accounts of people having a lap done and being 'cured' although there must be plenty of people out there like that, since it only grows back in 35% of cases or something - going by some research I read. Perhaps the people who have it successfully treated don't hang around online forums??

    I do think that if I were to have the lap, I would also want the treatment done too. Just because you're under GA... But whether to have the lap done in the first place, I've no idea.

    Sometimes I read of people feeling worse and having more pain after the lap. Were these people operated on by experienced endo surgeons, I've no idea. Probably who does the op has a great bearing on it.

    And then many people have the lap and a few months of relief and then it's back again - as bad or worse than before. And then you're like - what's the point!? And then there are people who've had so many laps and are in pain, and you don't know if that's because of the endo or all the surgery.

    It would be good to hear accounts of people who have had a lap and were 'fixed' by it. That might restore my faith!

  • exactly what i am thinking lets hope we get some answers

  • Most of my pain actually stemmed from left side, which turned out to be a constantly troublesome cyst on the left ovary. I had a lap, which turned in to big hole, but they removed the cycsts (one on the other side too) and one ovary and tube) and with them gone my 'constant' pains were gone too. I am now back to where I was before the cyst troubles, painful periods and painful ovulation, but that's from one side only for my one remaining ovary. As for endo pain I haven't actually noticed that much change, but having had all the adhesions cut back certainly freed up my organs for a while as everything had been stuck to everything else by the time I had my op. I don't think having an op just for the sake of a diagnostic look is worth the effort. Better to have a lap op and get something done with the endo and adhesions and endometriomas and anything else alien they identify, which can mean being booked in for a longer procedure.

    If work needs doing then push for it to be done first time, whatever is necessary. The basic lap op is nothing to worry about, and recovery will be pretty quick for most ladies, but that doesn't tackle what's causing endo. The only 'cure' is to have endo surgically removed where possible. there could be hundreds of lesions and simply not enough time in theatre to get it all done in one op. But removing any of the lesions will stop them from growing bigger and deeper and in to organs. sometimes bruning the shallow spots off with laser or diathermy will kill them completely, but it doesn't work for the deep rooted endo.

    If your endo had not yet invaded the bladder or bowel, you don't want them too, so get them seen to whenever and wherever possible.

    Suspending endo growth is thought to kill off some endo lesions, at least that is the hope, so pregnancy or GnRH drugs are possible ways to give some of the endo a chance to die off. It won't resolve all the endo or stop new endo from nesting in other places.

    If your endo is being made worse or new lesions forming from menstrual blood backflow up the fallopian tubes and out in to the stomach then stopping your periods by what ever means will help keep that to a minimum after surgery.

    Even though my lap op turned in to major surgery, I've had a previous lap op, and I wouldn't hesitate from having another if there was a chance for an end to pain. A lap op is far better to cope with that 24/7 gynae pain. It does hurt for a bit during recovery but it;s a different kind of pain and one that does respond to pain relief.

  • the link is really useful. thanks

  • I've just had a lap and it was only diagnostic. I'm glad I had it cause not knowing exactly what was causing the pain was worse at least now I know I can get the right treatment. I will need another op and wish it had all been done in one go but they have lasered some endo away so I'm hoping for some pain relief. I'm only 2 and half weeks after op so early days but I was back on my feet a week after and today feeling much better. Personally if I had the choice is have lap and treatment together to reduce scaring issues but even if I have relief for a few months it will be worth it rather than suffering every day. I'm not as bad as many on here and it has to be your choice but I had to know what was happening inside me. X

  • I am afraid 'one size doesn't fit all', as you probably have already gathered, it is a complicated condition that can affect different women in different ways. Ie. One woman may have a little endo and an awful lot of pain and symptoms, whereas, another may have widespread endo and not so much pain and symptoms. I have had widespread endo and adhesions spreading into stomach

    and tubes stuck to bowel and ovary. I had a laparoscopy and hysteroscopy to remove it, it initially worked then pain crept back and years later, I am still suffering alot of pain and symptoms. There again, during a CT scan done because they couldn't perform a Colonscopy due to the extent of my adhesions, they picked up something else Diverculitis and a Hiatus Hernia as well! So, it is very individual but the only sure way to find out what is really going on is to have a laparoscopy (a tiny camera on a thin wire) to have a look inside. Once they can see what is going on and the extent of the problem they can make decisions and more often than not, will try to remove it or as much as they can there and then and depending how widespread it is or what organs it affects is entirely

    key to how invasive it will turn out to be. The success or failure of this procedure does depend on location of endo or adhesions, for example, if as in my case it is on bowel or bladder (bowel) in my case, they often will either leave it alone for fear of perforation of the bowel or will remove as much is as safe to do. If it affects fallopian tubes (both mine were removed in previous ops) they will weigh up how damaged it is and importantly take your age into account as to whether you are likely to want a family downline. Obviously if very damaged, there is little choice but they can sometimes blow out the tube or tubes temporarily (ie 6 months) to give you a chance to conceive but they usually fur up again after that timespan and often end up being removed. They usually use blue dye to see how blocked they are. Going back to the beginning, laps are the only really effective way to get to the heart of the problem. Ultrasounds and CT's can pick up clumps of endo but smaller bits often go unnoticed whereas a Lap is more likely to pick this up. The Lap itself is really not a big deal, two or usually three minute incisions which you won't even notice in a few months (scar wise) half inch approx where they feed in the camera and other tiny ones depending on where endo is and to perform excision surgery. They often fill you with gas to allow them to see pelvic cavity better and the gas can be painful (particularly in shoulder) afterwards but goes quite quickly. If you are a younger female these days, they tend to hit endo with stomach injections like Zoladex and synthetic hrt, to send your body in pseudo (temporary) menopause to stop periods because by doing this, it starves oestrogen which feeds endo. During menstruation oestrogen levels rise sharply, this gives the endo lesions a 'real boost' and allows them to spread and where there is inflammation from lesions, scar tissue often forms in response and can cause further problems and pain by sticking organs together. My fallopian tube stump previously removed stuck firmly to my bowel! and ovary to bowel the other side and it travelled in my abdomen round belly button (it might be because I had tiny lap incisions around there). Some are apparently more prone to adhesions than others 'I'm one' but at the end of the day if you do have surgery the more skilled in endo and adhesions the gyne is the better as a general rule. Sometimes if endo affects bowel, they may call in a bowel surgeon to be present in complicated cases ressection is performed. That is generally only when endo is widespread and has been left untreated for years or you unfortunately have substantial deposits on the bowel or even bladder.

    This is why it is so important not to leave it to possibly spread and get it dealt with early. Of course there are no guarantees with this notoriously difficult condition and as yet no definite cures,

    but at least now they realise that the sooner they find it, treating it aggressively and swiftly is often the most successful approach. A lap itself is a very minimal procedure so try not to panic. Good adhesion barriers when performing delicate pelvic/abdominal surgery is also key but the skill of the surgeon is paramount.

  • I have benefitted each time from my laps and wouldn't change them. I honestly would go for it. Yes it may well come back at some point, but for some this could be years away. As has been said above, a good surgeon will take great care not to form adhesions and use barriers to prevent them. It is a big decision and all operations are a scary thought, but I dread to think where I'd be had I not had it removed. It also brings a level of piece of mind having it officially diagnosed, I was ecstatic to finally get a diagnosis and know exactly what was going on inside.

    Obviously, there is no cure for endometriosis, but there are plenty of treatments that can stall it's progress. It is entirely up to you which option you'd choose, but the recovery time after a lap is relatively quick and it is not too invasive a procedure. I would recommend having it treated at the same time as it's diagnosed. Some surgeons do this differently, but I was so relieved to find they had treated mine and I would not need further surgery. The recovery time can be just as long for a diagnostic lap as one with treatment.

    Good luck for whatever you decide to do and I really hope it helps x

  • I had mine done a few weeks ago and the moment I was told I had suspected endo I said I wanted a lap. I was told its the best treatment (apart from pregnancy) and I also wanted it so I knew exactly where it was and If would affect my fertility, as I'm on 22 and would want to be prepared for that possibility. I am my pain free yet but I'm pretty sure that's just my insides healing after the heat treatment as the pain isn't following the usus pattern leading up to my period. But as we all know its a progressive disease and there's no cure so pain relief is never totally guaranteed. My dr said it was 'likely' to relieve my symptoms for up to 3 years but I'm not going to count on that as endo seems to do what it wants and is unpredictable. But I didn't hesitate to have it done as thought it was worth a try and I'm still hopeful it was worth it x

  • Thanks those who have replied.

    I don't have severe pain - what should I do? I have an occasional mild ache where my left ovary is, feeling like a tender bruise when pressed on. I also have occasional pain in my left inner thigh and under my left buttock - but this is again not severe and is intermittent and largely at the end of my cycle. I do have severe period pain, but this is manageable with Naproxen. 2 ultrasounds have come back normal. I am about to start Cerazette to see if that helps.

    I am mainly worried about what is causing the pain, rather than the pain itself. But I can't quite justify something as invasive as an op just to find out the cause…? Or should I? I am nervous about an op making pain worse afterwards.

  • I'm a big advocate of the lap, but I think if you question your need for one then maybe you don't feel that your pain is bad enough to justify it. I'm not saying your pain isn't bad, but when my pains are really bad I would happily cut myself open and use my kitchen utensils if I thought there was a chance it could help :)

    If you haven't tried the combined pill then it's worth giving it 6 months and seeing how you feel.

    Good luck whatever you do!x

  • Thank you soo much guys for replying it really has made things clear...and i'm in constant pain and the pain killers just take the kick off it..and now its a week before my periods and its started to get worse..i now plan how i'm going to deal with the days when i actually start and work them around my chores...so i think i will push for the lap......honestly thank you so much guys if it wasn't for you guys on here I wouldn't know what to ask or what to push for...

    so a BIG MASSIVE THANKYOU

  • I think I'm not where you are amera, as I'm not really in pain much - it just feels like something weird is happening and I don't know what. I've had clear ultrasound scans but I'm worried in case they are missing something serious. I don't know if I should have an MRI? A lap seems overkill when I'm not in pain...

  • I had my first lap 3 weeks ago and I can say that psycologicallythe not knowing what was causing the pain was worse than the pain itself. I was diagnosed with mild endo and had treatment at the same time. Although the pain has not gone, I can now prepare for the pain and start to try and manage it in different ways instead of going through pain medication like it was going out of fashion.

    I would definately recommend having a lap as now I can look to the future instead of the not knowing and becoming depressed due to the pain. I am now back at work and now they have a diagnosis after 3 years of continuious long term sick they are really trying to understand the condition and support me the best they can. I feel very positive about the future and preparing to try to start a family now instead of later

    i hope all goes well and you decide what is best for you!!

  • Hey, so for me I am glad |I had a laparoscopy. Yes it did come back with a vengeance but I am now 100% sure it is endo and the doctors know too. It is no longer a question of maybe and what ifs. Also when I had my lap they found adhesions on both my ovaries and if I hadn't had the surgery then I have no doubt it would have gotten worse and damaged my ovaries. So personally I don't regret having surgery. Now it's back but who knows how bad it would have gotten without it?

    Anyway you can only decide what is best for you, just think about the pro and cons in the long run.

    Happy thoughts xxx

  • Hi Xenakis, what you are describing in regards to a bruise type pain when period is due or here is exactly what I had for about 4 and a half years. I had an ultrasound which showed nothing and like you as the pain wasn't severe I left it. (although I knew something wasn't right as the pain/feeling was so strange). However last year (about 3 and a half years after pain started I felt a lump around the area where the pain was, the pain had also changed to an almost constant stinging,raw like pain). I went to my gp and as no one had suspect endo (although now with hyndsight I have had many of the symptoms for years but never connected the pieces together) I was referred to a general surgeon. I had a ct scan which showed one lump but not the one I had gone to see the gp about, I then had an MRI scan which showed the lump I had gone about and they didn't know what it was as it was in an unusual place (abdominal wall and in my muscle) they thought it could be a haematoma or a sarcoma. I had an ultra sound guided biopsy and the results came back as endo. I had an op ( not a lap) to remove the lump 7 weeks ago. For the first 2weeks I felt okay just uncomfy from the op. However a week before my period I had the worst pain I have ever had. Severe crampy, pains in my pelvis, lower back, hips and thighs, also sharp pains in the place where the lump was removed, this continued for 3 weeks over my period, i had to take cocodomol, naproxen and tramadol (not altogether) I had a week where the pain was less severe but now a week before my period the pain is back and is as painful as before. i've been back to my gp several times for diferent types of painkillers and they sent me for an urgent appointment with my consultant. I saw him a couple of days ago and he said that he expected me to have pain as the lump that he removed was large and in an unusual location so it is very likely that i have more elsewhere. Perhaps the first lump that showed up on the ct scan is endo as well and i could possibly have it in the pelvis and this is why i have so much hip/leg pain. He has now referred my to a gynaecologist (at last) and they are going to do a lap. sorry for the long message, i just wanted to say that mine started like yours and if you don't have a lap now it is likely to get much worse. I wouldn't wish this pain on anyone when it is flares up as even the painkillers i've mentioned don't touch it 100%. Good luck whatever happens x

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