Full Excision Endometriosis

Hi,

My name is Marta and I'm 34. My story just like others to late diagnosed endometriosis. I was so fed up with NHS and regular private gino than I decided to go for private diagnosis lapo to one of the top doctors in endo up in Yorkshire. 10 days ago I had my first lapo, and half of the ovary removed and suspended for 10days (thats right this doctor does the technique which is brilliant). His diagnosis was endo stage 4 (also recto :(). Next surgery December which will last around 8 hours!!! And here is the scary part....I'm so scared of the pain but also the recovery from general anesthetics. Please ladies, any of you went through this?? I'm so so scared because my last operation was 3 hours and it was so tough on me and what about 8 hours?!!!!! Love, M x

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  • I too am going to have surgery with the same consultant, not booked yet as I have had to have carpal tunnel and shoulder surgery first which is is still very painful and will take 3 months to be back to normal. I had these surgeries done at the same hospital as I live in West Yorkshire and the hospital recommended the shoulder surgery first. I have had a diagnostic lap and hysteroscopy done already but a word to the wise the surgeon you have seen does not like to use good pain meds. When I came to from the lap and hysteroscopy he had removed a polyp and as a result I was in agony with really bad period pains, did manage to get some codeine but only one tramadol in the early hours when I was in pain again. When I had my pre-op for the shoulder surgery I asked why i had not had many pain meds whilst under anaesthetic, the nurse looked at my notes and said I been given morphine but not enough to really make a difference!! I will be getting g some strong pain killers from my GP before the total excision surgery as I also need a hysterectomy at the same time.

  • I'm sorry to hear that. I was fine with painkillers when I had my operation 10 days ago. I'm very scared of the total excision :(....about such a long time being under general and after the recovery. Anyways hope it will go well for you and me :)...is it dr ashwin trehan you are seeing?

  • Yes it is. Don't worry about the amount of time you will be under anaesthetic - I always find it strange that one minute you are conscious and the next minute its hours later. I have had 5 anaesthetics since last May and have found that each time recovery seems to take longer and that stuff they give you before the actual anaesthetic is wonderful. Good luck for December, would be grateful if you could let me how it goes, I will book mine in for the beginning of next year thanks to my shoulder being operated on for the second time in 8 years.

  • Hello ladies!

    I am just shy of 5 months TPPE with him!

    This will be a long post, as no one could tell me of their post-surgery experience with Mr.T and I was nervous, so hope I can help!

    Aswell as the excision/ovarian suspension, I had ventrosuspension (tilted womb flip) and both my tubes opened, I mention this as added to my pain after surgery.

    I was down for 8 hours, when you wake up, you will be swollen, your face, hands, legs, no one warned me of this until I went to surgery! It's a shock to anyone who visits, I looked like I'd been in a fight! It goes away through the night.

    Also, you will be sick when you wake up from the GA but someone is there to literally catch it and stroke your hair! I was sick twice and then it stopped.

    I was in and out of sleep for the majority of the day, I went for surgery at 730am, I was focusing around 7pm when my parents came to visit and by 10pm I was wide awake, typical!

    So the pain when you wake up, it is quite bad I won't lie to you. It's like an ache, a bruise, like you've done so much exercise, it is very painful to sit up the first few times BUT I did have my womb flipped and Mr.T said that would cause me the majority of my pain. If the pain gets too much then the nurses will give you more and they come around a lot to check you on you. They are fabulous and are there as soon as You need them!

    You have a catheter in, it's removed at around midnight, not painful whatsoever.

    You have leg things on throughout the night to keep circulation going they are rather annoying but necessary they say. Take ear plugs if you are a light sleeper as they buzz!

    The next morning, he will ring and he'll tell you he wants you walking and up and showered, I didn't think I could do it, but at 10am I'd washed my hair and was waddling around the room! And honestly, the pain had subsided drastically! A couple of hours later I was going up and down the corridor, going to the toilet alone, sitting/standing, I couldn't believe what I could do! And one day after such a radical procedure!

    The gas pain, I only got a little that night and just walked it off and it went away after the 2nd day and it didn't occur that often.

    I unfortunately had a problem with my bladder so I had to stay an extra night, I wasn't ready to go home to be honest, I was a bit weak still as I didn't eat much for the 2 days. ( I don't recommend the scrambled eggs, they were horrendous!)

    The car journey wasn't great, I live around 45 minutes away, and it wasn't easy to get in the car, especially if you have a larger car!

    Once I was home, I used a recliner chair, I walked to the kitchen as much as I could, I showered on my own from day one, I only had help from my parents when I needed to get upstairs, just incase!

    I think the first time I left the house was about 3 weeks, to walk around Asda! I believe it would have be sooner if I hadn't had my womb flipped. 7 weeks after surgery I went to Portugal for 10 days, and I was walking, a lot, everyday and was fine!

    My fatigue has totally gone, the chronic pain has gone, and a lot of the other problems endo caused me have gone!

    Unfortunately I have other problems so I'm not pain free BUT my life has drastically changed for the better, he is a wonderful, wonderful surgeon and he really has changed my life, I can actually leave the house and do things and not have to plan 2 days in advance!

    If you any, and I mean any questions please ask.

    Good luck to both of you, I will be thinking of you both xx

  • Hi Megan,

    Thank you so much for such a long reply. Sounds like you are very strong. Me after my first lapo and half of ovary removed and suspended next day yes I walked up and down but I was soooo weak and wobbly. I did move but I wasn't confident at all! I live down south in Windsor so for me its 5 hours drive!!! I had my surgery 15th of September stayed over night and one night at the local hotel and on Saturday noon we drove home. The journey was ok, not to bad. I got back home and managed to change bed sheets (I know crazy idea) but I did it so yes 2 days after operation I was able to do that...but then Sunday and Monday I felt super weak. I'm not 13 days post op and today I drove to local farm shop and went with my dog for walk.

    I'm seeing Dr Trehan on Tuesday coming and we will scedule second operation the main one, I believe beginning of December. Dr T said case like me he did last time in March this year, I'm very sever stage 4. I'm very scared of recovery and general anesthesia :(((((....feeling sick, being sick and the pain but I guess if hes able to cure me and take this pain away and non stop feeling fatigue....this is my main thing...fatigue...endo make me tired everyday, forgot how its to just move around like a human and have energy :(

    I'm glad to hear you are better and you feeling better. Please stay in touch. Lots of people dont have an idea what we have to go trough and it is good to know person like you is out there to reach. Thank you again for reply....

    marta xxx

  • Not a problem, I always hope I can help someone! At anytime if you need something please get in touch! I hope Tuesday brings some relief when it's booked and you can see an end! All the best xx

  • Hi MeganMae, I just wanted to say what a super reply you wrote to martoosha. I also wanted to apologise as you mentioned you didn't get any feedback from people who had radical excision surgery with Mr T and I wish I'd seen your message and could have put your mind at rest. I, like you, are one of the ones who've come out the other side finally smiling as this operation has given me some quality of life back after battling for so many years after sub-standard surgery which only caused more problems. I am from the UK, but live in Australia and did mountains of research and eventually found Mr T and decided to come back to the Uk to see him, it was one of the best decisions I've ever made. Like you I have other conditions whereby I can't say a final goodbye to all pain, but I can give you a picture of someone almost a year on from surgery to say that the improvement does continue. Mr T said a year post surgery would give me a good idea of what state I'd be left with and I have been so pleased with the results. Like you, I had severe chronic fatigue and don't get that at all now, or the gnawing back pain which used to make me feel so sick all the time.

    Just like you, I feel Mr T changed my life and I actually doubt I would still even have been here had it not been for his help as I could barely keep fighting anymore. He is the most dedicated surgeon I have ever met and deserves a medal! So called endometriosis specialists need to take much better note of his pioneering techniques and start improving their own skills I think.

    I saw quite a big jump in recovery at the 6 month level which you're not quite at yet, so I really do wish you all the very best for continued improvement. I seem to keep noticing as each month goes by (especially from 6 months til 10 months post surgery) that I've noticed little leaps forward again in recovery so I hope that is the case for you too.

    It is undoubtedly hard core radical surgery which certainly challenges you to find your inner fight and I was very weak afterwards for some time, plus suffered quite bad trauma long after the surgery and bad nightmares, but it was still the best thing I've ever done. I just wish more surgeons would do what he does.

    I wish you all he very best for continued recovery and am so sorry I couldn't have been there to offer you some reassurance prior to the surgery when you most needed it. Good luck in the future, Sara x

  • Thank you so much Sara, that was really wonderful to read!

    I'm so glad the surgery helped you, and I'm now looking forward to my 6 month mark, I need a boost! All the best for remaining well! Xx

  • I wanted to reply too as I'm a patient of Mr T. I'm British but live in Australia. I made the long journey back to have total excision in November last year. A bit like you, I had one surgery first of 3hrs to address adhesions from previous surgeries in Australia and excision of cysts with ovarian suspension. A month later I took the plunge and had the total peritoneal excision and have to say, a year on, it was the best decision of my life and Mr T is a true pioneer in endometriosis surgery. No surgeon in Australia does what he did, 6months after every endometriosis excision I was back to square on in pain and with more adhesions and more problems. It's just under a year since "the big op" and while it has been a long road to recovery, this operation was the only thing which helped bring me some quality of life back. I could barely go on and now I have more good days than bad which is all I could have wished for. I still have adenomyosis which undoubtedly causes some pain, but the symptoms of the severe endometriosis have almost gone completely since this operation.

    I know it is very daunting and I am not going to lie in saying you will no doubt feel dreadful after it but I can truly say I have no regrets whatsoever. I had to stay in 2 nights afterwards as I had a bad reaction to the anaesthetic & was very sick. Like what MeganMae said, don't worry if you're swollen afterwards - they actually suspend you at quite an age during surgery to get the best position for organs to fall way so the area being operated on can be seen best, hence you might notice a bit of head swelling but that settles down. I was under for over 8hrs and had no trapped gas/shoulder pain afterwards which was a miracle - I'd always suffered very badly with this in previous surgeries in Oz, but the theatre nurse explained they warm the gas which apparently helps ease the shoulder pain afterwards.

    The nurses are very kind in Yorkshire and will look after you very well as they appreciate the radical nature of the operation. However, they are all in agreement with Mr T that they want to get you up and walking those hospital corridors as soon as possible, Mr T is a great advocate in getting moving to promote healing!

    You will feel very sore and very fragile and I had trouble getting comfortable at night for a couple of weeks, but I promise you it foes get easier, even if you don't think it ever will at the time! Suffice to say, I was on a 27hr flight back to Australia less than 3 weeks after that operation, and while it wasn't the most comfiest of journeys, I did it!!

    I noticed a good jump in recovery 3 months in when things really started to feel less fragile but the biggest jump in improvement was around the 6 month mark I think where I felt a really positive step in things just clicking into place more. I'm almost a year in and while I will never have a completely 'normal' life with no pain, I can safely say that operation was the best thing I did to help myself and I can vouch for Mr T's skill as a really fantastic dedicated surgeon. If you want to ask me anything else, feel free to contact me as I hope I can be of some help from someone who has gone through the same surgery and come out the other side smiling for the first time in years! (As history, I battled with severe chronic fatigue for over 10 years in the UK, no GP believed there was a problem & ignored my back pain, endometriosis was only discovered in Australia 25 years after me suffering the symptoms of it. It only got picked up when I had trouble conceiving) I've had a very long battle in life with this and can't thank Mr T for his amazing skills.

  • Dear Sara,

    Yore message to Megan and to me made me cry. Not sure why I feel so emotional but I think I finally feel they are women out there who understand me. It is scary and people think because my arm doesn't felling off and I look healthy outside then I'm not sick....but the truth is the pains of all sorts and fatigue are so bad I feel like I'm dying. Fatigue passed 6 months to me is like heal....I just graduated from my Masters degree week before my first laparoscopy with doctor T, and I think it was miracle I did it, considering how tired I feel. Anyways I'M SOOOO HAPPY you feel better. Thank you so much for all your support. I'm seeing doctor for the excision surgery in December. Hopefully by Christmas I will be mobile enough to enjoy. I so cant wait to be well enough....

    To me you are all heros! I feel like I want to cuddle each of you....all I can do for now is to send you love and virtual hugs.

    With Love,

    Marta xx

  • Hi Marta...I'm sorry if I got you upset, it is such an emotional rollercoaster isn't it and even a year down the line talking about it all again brings a lot of hard memories back. It was not an easy road and I went through so many doubts about having that big operation, but I think you get rewarded for your bravery when you go for something like that. I came off the forum for a few months after the operation as I was very fragile and took a while to start seeing some good recovery, I feel really bad that I let down other people who were asking for feedback on Mr T, but at the time I had to try and focus on getting well and couldn't really cope with reading others' stories on top of my pain, just felt a bit weak and pathetic and had to be a bit selfish and put myself first (I'm hopeless at that!) I just happened to see your message today and had to reply. I still get quite a bit of post traumatic stress as it has taken me over a third of my life to prove doctors wrong and it's very bitter sweet, but I finally feel vindicated that I knew something was very wrong and finally got an amazing surgeon to help me. Endo sufferers all have to be so strong and fight so much, and it's such a shame we have to find that extra fight all the time against doctors who dismiss us, as if we haven't enough to cope with!!

    I can totally understand what you are going through and I found that was my biggest battle as no one, friends or family, really got what this operation meant, but people on this site understand the most as they're going through the battles too. Any time, just get in touch if you need to.

    Like you, I was always told how healthy I looked, especially having a tan from Australia! No one would ever believe there was anything wrong, which was incredibly frustrating so I can really sympathise.

    Amazing that you managed to get your Masters, well done, that was no easy thing under the circumstances and you should be really proud of yourself. I had to give up work, I'd run my own business, but it was too exhausting to continue, but am slowly building back up now. You've done so well so give yourself a pat on the back!

    I'm sending you a big hug back and wish you all the very very best for your next surgery. You relax over Christmas and make sure everyone look after you and runs around after you. Next year will be a new start, please don't get despondent if you feel very weak after the surgery, at times I thought I would never start feeling well again and probably sunk a bit lower before I started to feel brighter, but you won't regret it. It will be a very emotional time but people like me are there for you.

    If you have any questions whatsoever or just need a virtual hug from someone who knows exactly what you're going through, then please do not hesitate to get in touch.

    I'll be thinking of you and hope it all goes really well in December. 2017 will be your year, I am sure of it!

    All the very best, and thanks for your message, love Sara xx

  • Hey Sara,

    Thank you for another reply. I'm sorry I didn't reply earlier but I was trying to recover as much I can and passed 3 days I was even out for walks etc. This recovery been hard for a week post op so I cant imagine the full excision one in December. Anyways I have to do it because endo eating my colon now and thats not fun. It is progressing so much and so fast. You can't imagine how happy I feel when I read about stories like you and you feel better :)))). I'm so so happy for you!

    Thank you for being there for me. I'm going away to Poland to stay with my grandmother in her countryside house...I'm taking my dog Mia and I will be there for 5-6 weeks to get strong before my main operation. Decided to take that long off (I'm blessed I can). In December I will let you know how did it go. I'm also thinking to do short blog on youtube with the hope I would be able to help somebody out there....even if I help one person it counts ( just like you doing now by taking your time to email me) :). Anyways have a fab autumn and I spk to you in December xxx Marta

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