Endometriosis UK
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can i request surgery

can i request surgery even before i try all other possible treatments? I have been on 2 pills now dont want the coil or injections or anything for personal reasons also if my endo has spread i want to know where it is and what effects this can have on me, so can i ask for surgery or will i just get shot down

i am 23

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Thank you. I do want children havent yet had any.

IN terms of hormones and things, i was told yesterday off a gynaecolgist that any pill would work and he thinks i should be on the one were you have a bleed so there for not stopping my period i thought this was wrong because as you said this can lead to backflow which is concerning me.

I do want to know exactly where my endo is and what the implications are of this, I was just told i have endo and given a pill (whiich let me bleed once a month) sent on my way, no support, no advice nothing about having kids or anything about endo was told to research!

i think i just want surgery to see where the endo is and then i want answers and support i want a dr to sit with me and explain everything and answer all the questions i have.

in terms of coil or implant i do have reason i dont want them I would prefer to avoid if possible but like you said surgery isnt the answer which i appreciate. Pills just dont agree with me never have even when used purely as contraceptives but doctors just dont seem to care anymore.

I think my moods and my emotions are stopping me from thinking straight i need the answers im looking for in order to feel more open and more positive to different treatments

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Please do not let anyone you dont know talk you out of surgically excising endo. Medical treatments are just a sticky plaster but do not treat endo. Your instincts are spot on. Endo needs cut out not burned or it will continue to be a problem but there is no reason that someone should be putting you off having surgery when your specific question was that you wished to have it. Surgery - as long as its done by a specialist who can identify endo and properly remove it IS the answer. Im afraid to say there are no expets on this forum - including the reply you've recieved which is full of outdated thinking like endo back flowing. You will get more up to date and medically backed info from Endopaedia website and the facebook groups EndoMetropolis and Nancy's nook. If you do think surgery is the right thing for you make sure you researxh your surgeon first. Theres a lost of accredited centres on the BSGE website but also use the facebook forums to find out what you can about surgeons like making sure the excise rather than burn. X

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thank you! I am so confused right now I dont even know what this is really well i know what it is but dont know all the treatments and refuse to have something like the coil or implant that i really dont want because docs want me to and my reasons arnt "good enough" not to have them it should be a simple i dont want it so i dont have to its bad enough having endo let alone being forced to have treament i dont want

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Agree totally. You are not a child. Do you have many symptoms and pain?

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lots of pain at the moment but they just stick me on painkillers and send me on my way seen 4 doctors in 5 days and got nothing :( experiencing trouble sleeping these past few days havent slept in 4 days now :(:( exhausted, mood swings, emotions are a mess i can be happy one minute crying the next. lack of answers and knowledge is my worst enemy at the moment.

How about you? if you dont mind me asking

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I'm good but trouble sleeping but for different reasons! Endoscopy tomorrow morning to rule out coeliac disease. Have been eating lots of gluten over last few weeks and today indulged lots to ensure have a good chance of seeing if its there lol - daft i know !! Have you ever had a lap to diagnose your endo? X

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yes in June so all abit new to me..... hope all goes well tomorrow

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So if you just had a diagnostic lap in june but haven't removed the endo then you need to decide whether you want to push for an excision lap in whichcase you need to find a specialist from the accredited list. If you have already had the endo removed but you have had no pain relief then you need to decide whether to stick with the same gynae or ask to be referred for a second opinion elsewhere. Thank you I'm sure i'll be fine. Good luck x

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I requested it and am very glad I did. I do take the pill, without breaks, but like you I wanted to know exactly what the extent of the endo was and also had a dye test done at the same time because I was worried about fertility. However the other comments are right, existing endo tissue can be removed by surgery and it can help by giving you a clearer idea of what your situation is but it will not stop it coming back, you need to stay on treatment. Good luck, wishing you all the best xx

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Endo doesn't regrow or spread ( although endometriomas are know to reoccur) problems continue because either the surheon wasnt skilled enough to identify the disease and so it didn't get removed or an insufficient job was done at removing it - hence why wide excision is recognised as more effective than burning the surface of endo. This info is out there but isn't widely known...or understood...or for that matter prepared to be accepted.

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I'd just like to say to Kayjayne, that the post written by impatient, in my view, isn't outdated.

She has written a lot of very informative posts on this site, that have helped a lot of people including myself, my view is that she must love reading about medical issues, or that she's a nurse, I don't know, but there are things that she's told you which are accurate and I know, because I'm an endo sufferer myself.

I had a laparoscopy in February where they cut out, burnt and unstuck my bowel from my uterus, they also gave me the Mirena coil, because I had such heavy periods and also, each time you bleed, these endo cells ARE pushed round your body, which means they have more chances of attaching themselves to different parts in your body and growing.

I have to say, I'm still in a lot if pain, and have been for about 3-4 months now, the endo was never completely removed from my ovaries, and now a recent scan shows that my ovaries have stuck behind my womb.

I have seen a consultant and she doesn't want to give me another lap, even though some people have several, because like impatient and the consultant both said, the scar tissue is something else endo has to attach itself to and start growing!!

Pain killers and the prospect of 3 months worth of prostrap injections to try and melt away the remaining endo, have all I've been offered, I really don't want the injections, but don't know what else to do, although I have been told to come back in 6 months time to have them!!

Having endo is a really long, slow and painful process, unfortunately once we have it, we're stuck with it. So try not to get too overwhelmed by it. Have your laparoscopy, find out what's going on inside and let them deal with it, but after that you will be pretty much left to your own devices, I was discharged and told there was no follow up appointment, I knew nothing, and ended up getting really ill afterwards because I was trying to carry on as normal, doing housework etc, and I shouldn't have been, but nobody told me that!!

Arm yourself with questions, write them down, and push for answers.

I wish you well.

Lisa xxx.

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I disagree . If it makes any difference at all which i dont think it should i am a nurse with 20 years experience. From what i understand impatient works in a school. The website Endopaedia tries to inform and bring outdated understanding of this to liht and help moving thinking forward. Each period doesn't move the endo around. Dr Redwine is well respected and Endopaedia is an excelent reference source. Happy reading x

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I sure would not accept any of the nasty injections,coils,gnrh rubbish

you need a lapascopic evaluation as a starter

but have you tried Agnus Castus or natural progesterone to rebalance your hormone system .....that would be my first safe option to try

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hi, I am in a similar situation, I have been told by my docs that I need to be referred to see a gyne, hospital have said that it could take 8 months just for the appointment, let alone treatment!! All that time I do not know what is going on with my body and I cannot take fake hormones due to issues years ago, so sick of taking so many pain killers that I felt like throwing up and my hormones all over the place, I have looked into the herbal approach, and altering my diet, one month later and I feel better, not perfect, but better. wish you the best of luck

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Endo does not grow....... Fact. Endo does not spread....... Fact. Retrograde menstruation has been disproven..... They have found endometriosis cells in foetuses. Endo is a cell which reacts to the eostrogen produces monthly. The eostrogen causes the endo cell to become inflamed (no it does not swell up and bleed..... Fact). This then causes inflammation in the surrounding tissue. Because eostrogen levels in your body rise and fall each month, the surrounding tissue does not have time to mend itself. A good analogy is like hitting a bruise over and over again. By removing the endo tissue, you remove the inflammation and therefore stop the pain. The reason women have recurrence after excision surgery is due to the excision not being radical enough and leaving behind endo tissue, or not being skilled enough in the first place. Drugs will only mask the pain. Hysterectomy solves nothing (only adenymyosis) removing ovaries just causes more problems.

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Surgery may seem like a clear easy path... Just cut/burn it out. But a doctor isn't just going to give you one because you ask for it in my view... Why would they?

1. They risk any number of complications with surgery (bleeding, allergic reactions, errors, loss of airway, death!) they are all risks, so if they can treat with more conservative options with less risk they are going to want to try them first? Get me :/

Maybe kind of like making an overweight person lose weight by changing their diet before having a gastric band thing? If that makes sense.

Also 2. Surgery is expensive and the NHS system/ way or whatever you want to call it is always going to try a cheaper option initially.

I know it seems crap not just cutting to the chase so to speak but having a lap to find out where it is psychologically may be better for you but physically the treatment (Other than surgery) is the same.

Annnnd even though I've had a lap and they have seen where my endo is clear as day apparently my zoladex treatment is also part of the diagnosing process?? Eh Drs ey? X

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