I don't want to go through surgery 😩

Hi ladies

So I have been diagnosed with endometriosis but I'm not too keen on having the surgery even though I know it's something I need to do. Does anyone know if I don't have the operation could the endo get worse, as in the lining gets thicker the longer I leave it or do you just stay at the stage you have?

Any help or advice would be great!!

Thank you x


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25 Replies

  • I think without treatment there would be the concern your endo could get worse. What is it that puts you off having the surgery? Xxx

  • Yes I was afraid it would get worse, I think it's just the whole thing of getting put to sleep and the whole process of it all. I know I need to get it done eventually but maybe it's time now because I have suffered for it for years and just be recently diagnosed. But I just have one of those mindsets and think I have been dealing with it for years might as well carry on!! Thank you for your reply xxx

  • Yes, I'm afraid it can get worse. It can start burying more deeply in, forming deep infiltrating nodules which can cause more damage & extra scar tissue can build up which then increases risks of more adhesions. My endo lay undiscovered for over 10 years & when I finally had a diagnostic lap, I was told it was one of the most severe cases they'd seen, I'm sure it got worse as the years went on. Weeks before my lap was booked I passed out practically in a comatose state, the endo had wrapped around my tube from my kidney & was pushing all the toxins back into my kidney & I was esssentially being poisoned.

    I know surgery is frightening & it's also not the end fix as far as endo is concerned as it can come back unfortunately. But I believe it's better to get on top of it before it gets a proper hold of you.

    While my endo came back as I have a v aggressive form of it, I don't regret the surgery and it brought me some respite from the symptoms.

    Good luck with it all x

  • Oh god I'm sorry to hear that!! I know I think it is definitely something I need to do. I just think to myself because I have dealt with it for so long might as well carry on but it's the worse way to think and the gynocologist doesn't really help with options etc. But I think it's time to have the surgery. If you don't mind me asking how long after did it come back? And did you have the surgery again? Thank you so much for you reply x

  • Hi there. Thanks for your message. I know what you mean thinking you've coped for so long, so why not just continue to battle on, but I've been there, and it's not going to get any better, so I do think you have to face it head on unfortunately, as hard as it may be. My first surgery (which was a diagnostic lap) was after nearly 15 years of symptoms which had been repeatedly ignored by my GP in the Uk. I moved to Oz and mentioned to the GP here about my worsening chronic fatigue, I'd also been trying for a baby with my partner and not been successful, so a few things led to the diagnostic lap. Anyway, I was riddled with very severe stage IV endo which the surgeons did their best to remove here, but left quite a large remainder of a deep nodule of it on my ureter, so I suspect that probably had a hand in me feeling the endo had come back within 6 months after surgery. Had they removed that fully it may have been different but they were worried as it was very near the main artery to my uterus and were understandably nervous about operating in that area when I still wanted children. I also had 2 rounds of IVF 6 months post op which obviously exasperated any underlying endo and would not have helped. So I wouldn't let my experience put you off, however, what I have learnt in hindsight is to find the right surgeons to tackle the problem as best they can. I had surgery again, split over 2 operations: The first in Sept 2015 (about 3hrs long) to remove a lot of adhesions which had formed since the first surgery 2 years prior, and also my ovary had stuck to my uterus, bowel & ureter and that all needed un-sticking. I had 2 chocolate cysts too which were removed. Then 2 months later in Nov 2015 I had what is called total peritoneal excision (nearly 9hrs long) which is a very radical operation only done by a very few surgeons and not for the faint-hearted, I see it more of a last resort to be honest, it is also hugely expensive, but I'd had over a third of my life ruined by endo, so had to take the risk and have the surgery. After 6 months I felt a BIG difference, symptoms subsided and I felt a corner had been turned. Unfortunately, I then did 3 rounds of IVF back to back until Christmas last year and that had a profound effect and sent me backwards a lot. Had I not done the IVF, I firmly believe I would still be enjoying an improvement in symptoms.

    Hope that helps, feel free to ask anything else, all the very best xx

  • Thank you so much for all that information!! I'm really sorry to hear about the IVF and I honestly do wish you the best of luck in the future with children. Just remember there are so many other options as hard as it seems for us with endo! I do have a surgeon that I will use but her problem is she doesn't really explain anything and just keeps saying have surgery. But I know that's the road I have to go down and talking in here has helped!

    Stay positive and strong and I hope everything works out for you xx

  • Thanks so much, very sweet of you, all the very best love, any other questions feel free to fire away & I'll do my best to answer them. Don't be afraid to ask the surgeon to explain and re-explain if you're confused about anything, it's your body & you have a right to know what's happening to it! Will be thinking of you and hope you get on ok, I'm glad it's helped a little chatting thru things, love Sx

  • I have made an appointment to see my gyno next week so let see what happens! But I do feel much more confident about having the surgery now. Thank you very much! Good luck with everything xx

  • Yes, it does progress. I wasn't diagnosed until I was 38 by which time it had destroyed my fallopian tubes and was growing on my bowel. And my pain and symptoms had progressed over time - the only reason I was finally able to get a diagnosis was because the pain had got so bad I was going to A&E. I would give anything to have been able to access treatment before things got so bad. I know surgery is horrible, but it may also be inevitable. Please don't put it off.

  • Sorry to hear about that!! Yes I think I just need to put my fears to one side and get on with it. Il make an appointment with my gyno this week! Have you had your surgery? Thank you for your reply.

  • Yes, 3 surgeries now. Unfortunately because things were left so long I had to have a hysterectomy, which I had 9 weeks ago.

  • Sending you hugs!! Stay strong and positive and don't let it bring you down. Hope your recovery goes well.

  • There are a number of treatment options including hormonal ones and surgery is frequently used but it is not the only path and is not a silver bullet to a cure .

    This is something you need to discuss in depth with your surgeon / consultant ( make sure he is an endo specialist) as it depends on the type location and extent of your endo as well as your symptoms and also things like the risk of progression or to vital organs or structures, or need for fertility balanced against the level of risk of your surgery. Hormone treatment works in some women but not in others.

    Ultimately it is your body and you decide. It is not for us to say. Surgery is also not without risk can worsen or improve symptoms though most often improves them. In some milder cases surgery can be avoided if the main indication for it is pain and quality of life rather than risk to organs and the patient finds other treatments effective, but in other cases that's not an options. Endo is not cancer and decision for surgery is not always clear cut.

    This link gives a good overview of all treatments. endometriosis.org/treatments/

    I am such a a patient whose case for surgery is finely balanced working through this dilemma and wanted to offer a different perspective.

  • Thank you for your reply! Yeah I think that's my problem is because I have been on different pills and they haven't worked and now my gyno is saying that surgery is my only route but I do think I need to talk to her more about it. Thank you for the link I will definitely read it now.

  • Starry makes a good point, surgery isn't for everyone. Endometriosis is a long road to be on. I reached the end of my tether and had absolutely no quality of life left, so took a very radical approach. I would have not have had that very complicated & risky surgery in say the first yer or two of being diagnosed. You work up to levels like that. I was desperate to have a baby and more importantly to not be in such pain every single day, and that's why i chose a radical approach. There are plenty of occasions endo can be managed successfully, the whole picture needs to be seen and a path chosen. Surgery can increase scar tissue which brings with it extra problems, it's all a very fine balancing act and hopefully having good chat through with your consultant will make things a little clearer for you. Everyone's journey is different, but I hope you get some relief soon.

  • My doctor inserted me the Mirena iud in order yo try to avoid surgery. Give it a try!

  • Also, I have been told that the Mirena iud stops the endometriosis progression. Up to now I am very happy with the mirena, but I have to wait few months more to know if i can avoid surgery ( I have an endometriosis cyst which they expect to shrink by mirena action. But let's see if i am Lucky!)

  • Thank you!! Do you have any side effects with the mirena?

  • No side effects. Probably some small issues the first two months, but not big deal. This is my fith month: no acne, no weight gain, no bleeding, no change moods, i feel my belly less swollen, no infections, no candida, my libido is as always, etc... So far I am very happy with It :)

    Ask your doctor about mirena and endometriosis. It is said It usually helps a lot with endo and side effects are minor. The best thing you can do is to try to avoid surgery if possible.

  • My gyno wanted me to have the surgery and then have the mirena too but I was worried about side effects. Because I suffered from an outburst of hormonal spots and I have just got my skin back on track and I'm worried the mirena might cause acne I know everyone is different with side effects but it brought me down so much that I'm willing not to go on and just suffer with the endo!

  • I was also afraid about mirena side effects but at the end it has been great. I did usually have acne before menstruation, but with mirena i have absolutelly nothing. I think It is worthy to give It a try and see if you feel ok with It inserted, It is a very great treatment againts endo. Talk with your doctor, and dont be afraid if he advises you the mirena. Just, let It be and give It a try. My experience has been very positive, i am very happy with It. I was afraid at the beginning but at the end it has been worthy :)

    And, in my case, i have less acné after the mirena. :)

  • Yeah I think will try the mirena before the surgery and see how that goes and then it from there. It's worth the try! Thank you for your help ☺️

  • Yes, I think that is a very nice decision if you feel you are not such bad and that you can wait to be operated. It depends a lot on the person and symptoms but if you feel you can wait to get the surgery and give a try to the mirena, I think it is worthy.

    The most of the gynos I went wanted to remove my endometrioma cyst (it was 6cm) as soon as possible, but I went to the best endo specialist in my country and he was the one who told me to give it a try to the Mirena and see if the surgery can be avoided. So far, I do not know yet If I could avoid surgery or not, but it has been worthy to try the Mirena: I have no pain, no side-effects. Let see which is the size of the cyst in my next ultrasound.

    If my gyno says to me that I need to have a surgery at the end I will do it, they can operate you with the mirena inserted :)

    Let's see what happens in the future, but my current feeling is that I love mirena and that I will keep it forever in order to protect me against endo :)

    And, just one more advise: try to find the best endo specialist in your country. It is very important to get the best treatment for endo, and not all the doctors are well experienced!

  • I personally regret having my surgery. I was like you, very scared and anxious but felt I had to have it. I did in a way because I finally got a diagnosis. But as for the removal / lasering of the Endo, I was off work for a month (needed longer) - I got an infection and just genuinely was a very slow recovery. My stomach muscles are still sore from the op 4 months on and I cant resume my normal exercises. More importantly I have not noticed any relieve in my symptoms so I feel like the surgery was a waste of time. I have been told the Endo can come back and get worse but I am pretty certain I will not be havin surgery again in the future , this is just my experience. X

  • Thank you for sharing that information! Yeah I think surgery is a big decision and I feel like the gynos just use that as a first option without really explaining anything. And I have a few other conditions which might effect the surgery and recovery etc so I don't think it's worth it x

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