So yesterday I had my first laparoscopy after waiting for nearly 6 months, and was told I have stage 4 endo.
Obviously you go through the motions and you know that something is up but I don’t think anyone is truly prepared for the stage 4 diagnosis!
I am totally new to this, I’m really looking for a support platform to help get me through the next few weeks.
After the lap (which was yesterday so I’m feeling pretty sore!) I was told that the endo has completely covered my left ovary, to the point where it was completely stuck to the left side of my body. This means il have to have it removed in 6-8 weeks. Has anyone else had this surgery? Is it done via keyhole as well?
Looking forward to having a chat with some fellow endo sufferers.
Char x
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BeanC91
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Hi Hun... I’m really new to all this too.. very confusing time isn’t it. I don’t know anyone else with Endometriosis personally, so I’ve just joined this group. Hope you get the answers you need. X
Hey! It’s all so daunting isn’t it. I don’t know anyone else who has it either, my mum had it when she was growing up but it was removed and that was all the treatment she needed. It’s nice to know that there are people out there going through the same ordeal! Xx
I had no idea what the stages were either, but basically in a nutshell they are as follows: minimal, mild, moderate and severe. I’m apparently between moderate and severe with my left ovary covered in the severe stuff. I think (don’t quote me on this) but they judge it based on how much they find, the mass it’s covering and if there are any cysts/legions that are around as well. It’s all still a bit of a blur tbh! Xx
Hi! I was booked for my lap yesterday and I'm shitting it..They've offered me a marina coil to be fitted but I don't no! Heard so much bad things about it.
I'm so scared about being told I have stage 3 or 4..have you had a internal & external scan to check before they did the lap? Sorry your going through a bad time! Hopefully your get sorted soon xx
Hey Layc. I chose against the coil being fitted, everyone I know who has had it has wanted it out like a week later! I could be different and get on fine with it but I don’t want to take the risk! Before my lap I had swab after swab, internal and external ultrasound and then the lap. Thanks for your kind message, I’m slowly starting to feel a bit more human! Xx
Hey! I'm glad your feeling a little better..I think I'm going to go against the coil and see how well I get on with it..I am booked in for Tuesday coming and I am crapping it! I have no idea what to expect or what there going to do..all I've been told is to be at hospital at 7am..xx
Hi, I had my lap last month and I was not told what stage I was until I got my letter from the hospital. All I got told was 5mins after coming round my consultant come over and was like yeah your full of disease there was nothing he could do cuz he is not an Endo specialist so he has transferred me to another hospital that was the last time I saw him. Then I got my letter which said I had stage 4 and a frozen pelvis where my Endo has stuck everything together. I find it very hard to talk to people about Endo and I feel like they don’t understand the pain. It’s hard. Hope your recovering well x
Heya. I’m very lucky that my nearest hospital is an endo specialist hospital, so I really hope you get the treatment you need when you are referred! Xx
Hi... I'm stage 4 as well...had my first lap last August but have been advised need another asap as endo has grown back rapidly. Going to a different surgon and he's told me he's using a completely different procedure. The first surgon confirmed my ovaries were fused together ( known as kissing ovaries) am not sure if they are fused because there's so much endo around them or if I was just born like that! But a new mri shows I have a frozen pelvis too. But this new surgon is hopeful he can separate them and clear all the endo. He believes the procedure he is using will mean endo stays away for longer. He never mentioned the chance of having to remove an Overy... Mayb before ur next surgery try to contact Dr to see what type of surgery he/she is using n ask if a different procedure could save ur overy
Hey, thanks for your message. I’ve never heard of kissing ovaries before! It definitely doesn’t sound fun your surgeon sounds great though and is looking into options for you. I won’t know mine until about 6 weeks from now, so fingers crossed they have a plan for me! Xx
Hi, I’m stage 4 too, I’m 31 and have been suffering with endo since I was 16, I had my 4th surgery April this year which was quite a complex surgery as my bowls were badly affected by the disease. All I can say is try and stay positive. At one stage they were going to remove my ovary as I had ovarian torsion and was admitted as an emergency, fortunately they saved it. But never the less if they hadn’t I would have still been fortunate to have one remaining ovary. I believe that they do perform the removal of an ovary by key hole, but I suppose it depends on what surgeon you have. Endometriosis is a long, stressful, emotional ride that never seems to stop. You have to be strong and although sometimes it’s so difficult try and remain as positive as you can. Good luck and I hope everything goes ok with yours x
Hey, thanks for your message it’s day three post lap and I feel a lot better in myself, just still really uncomfortable. It doesn’t help that I’m not sleeping great as well! Ideally I want to keep hold of my ovary BUT if it has to go it has to go, if it helps with my pain it’s somewhat a blessing I guess! Trying to stay strong, this platform is actually proving to be a great support network xx
I am also new to this! I was diagnosed with stage four Endo in September after my 1st lap and need further surgery as my ovary is fused to my bowel.
I think that my further surgery is also keyhole but am discussing this with a doctor later on today and have multiple appointments this week!
I know you must feel so confused and worried but don't worry! Just keep positive and know that finally, something is now is motion to help you! It's a lot to go through and get your head around and I know exactly how you feel.
This really is a great platform to get advice, support and also rant so make sure to use it! If you ever want to message then feel free! xx
Hey, thanks for your kind message. I’ve woken up this morning feeling a lot better in my head, just my tummy is still so sore! Is that normal after a lap? Definitely very confused and worried etc but I’m actually a bit overwhelmed by the support I’ve received on here so far . It just goes to show we are all in this together fighting this horrible disease! Xx
That's completely normal! Your body and mind have gone through a lot, and the anaesthesia itself will make you groggy for a while - it takes its toll on you! It's normal to be a bit delicate for about two weeks after surgery. I personally still feel a bit groggy after a month but think that is a mixture of things. Just look after yourself and don't push or pressure yourself to feel better. Take it day by day and you will feel better in no time! We are all in this together xxx
Hi I had a lap in June told I had stage 4 and that my gynee wouldn't do anything since had an mri and app 3 weeks ago I have a large chocolate cyst on my left ovary to so now a waiting game when I will be called to have my actual op to help it's so hard I have been told I have this going on inside me and nothing is being done every month I am in so much pain and most of the month too and it's a constant reminder. I am stressing tjat my time is running out to have babies too. So so hard wish you well xx how long did others wait it's doing my head in feel like my life is on hold! Xx
Hi, im quite an experienced endo sufferer. Im 62 now, had problems since 15 but diagnosed around 35. Had ups and downs but zoladex was my life saver. If you need to chat and i can helo in anyway, give me a call on 07810004314 x
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your surgeon sounds great though and is looking into options for you. I won’t know mine until about 6 weeks from now, so fingers crossed they have a plan for me! Xx
it’s day three post lap and I feel a lot better in myself, just still really uncomfortable. It doesn’t help that I’m not sleeping great as well! Ideally I want to keep hold of my ovary BUT if it has to go it has to go, if it helps with my pain it’s somewhat a blessing I guess! Trying to stay strong, this platform is actually proving to be a great support network 
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