Endo-surgery diary part 2

after endometriosis surgery
Recovery post surgery

-Warning- this post might be longer and more detailed than usual, but I really want to post it, as it might give certain readers a good overview of how you might feel after a laparoscopic excision surgery to remove endometriosis. It gets really personal sometimes, but I tried to stick as close as possible to reality. I tried to stay positive during the entire process of the past 6 months and I must say, this has really helped me through this difficult time. So if I could give you 1 piece of advice, positivity would be the key.

Positivity
Positivity is key !

Day 1 Post surgery: Endometriosis surgery is over and I arrive in the Hospital room, where I will be recovering for 4 or 5 days. Feeling groggy and high and I’ve got a strange sensation when I breathe in and quite some heavy shoulder pain. I look around and can see I’m sharing the room with a nice old lady. I go back to sleep and the pain and noises fade away.

Day 2: I feel a bit bloated and have some gas in my intestines, but for the rest I feel good. The gas is also what causes shoulder pain, as they use this method during surgery to check whether your intestines are not damaged in any way. My endo-surgeon came to see me twice and told me that the operation was very heavy. They found a lot more endometriosis tissue than originally expected. I seem to be one of those patients, who have less symptoms then  actual endo tissue. According to the endo-surgeon, the endometriosis in my body is the result of tissue that has been in my body for at least 10- 12 years… Hard not to ask the question. What if my symptoms were taken seriously 10 or even 5 years ago when I arrived at the hospital in Zurich with my severe menstrual problems in the intestine?

I was allowed to walk around for a while today and that went well. I still lose a bit of vaginal blood and walk around with a urine catheter and a bag to collect excess blood from the operation. 
These things don’t make it very pleasant for me to receive visitors. Only my husband is allowed to visit me and he Comes by every day. Yesterday he took with him a sweet card and a picture of the 2 of us in better days.
The nursing staff at the Hospital is very sweet, but when they wash my legs and intimate parts, I feel very small… you suddenly start to realize how lucky we are, when we are healthy and able to look after ourselves without any need for help, just being Independent. Hopefully I can walk around a bit more tomorrow and just wash myself. 

Day 3: Didn’t sleep very well, because I had diarrhea at night, but it’s good that the intestines are already doing their own work.
It was quite a hassle to get up because I still had to drag along a catheter with urine and a bag of blood from the wound of the operation.
Very strange sensation this night on the toilet, to notice that the left side of my intimate parts have no feeling whatsoever. This seems to be normal after surgery… I just hope it will get back to normal soon.
At 7.30 I woke up because of the smell of eggs, so breakfast was already standing in front of me.
Full of impatience I wait for the endo-surgeon to hopefully release me from my 2 handbags (the ones with urine and blood,….) and yes, at 11h he arrives and gives me the good news that everything can go away and I may even take a shower! WOOHOOW! I didn’t expect this and this completely made my day! He mentioned again that he is amazed that I am already so fit after the operation which was quite heavy.
Showering, eating, dessert, doing number 1 by my own, reading, watching TV,… I feel good and am slowly beginning to hope that I might be able to go home tomorrow!  The surgeon will decide tomorrow.

Hospital socks
sexy Hospital socks

Day 4: I can go home! Blessed when the doctor speaks those words of redemption. ☺️
Despite being constipated since more than 24h, I feel relatively good and say goodbye to my talkative neighbour, whose life I now know from A to Z. Strange how fast you bond with a person you have never met if you are sharing a hospital room. Somehow, I found this very touching and Special and I hope to stay in touch with my roomie.
I have a strange tingling sensation in my left foot and leg, but that is normal according to the surgeon, because the sciatic nerve naturally connects these areas. The endometriosis seems to have seriously affected this nerve and therefore it may be normal for me to suffer from it for a few days.
My husband comes to pick me up and drops me off at home. What a feeling of freedom that first moment! A little later I realize the disadvantages… no one asks me if I want to have a cup of tea or comes by to show me the menu of the day. It has to be said that the nurses of the Zurich hospital were actually really great. Especially this really friendly Colombian woman, was really fantastic, very warm and compassionate and I certainly want to thank her even more with some chocolate and a card.
At home everything goes well and I Netflix and read through the first day in a jiffy.

Day 5: First night in my own bed and sleeping next to my husband really feels great.
Unfortunately the tingling has worsened and my leg and back of my left buttock are really hurting now. It feels like a serious muscle pain. But from what? I haven’t done anything in the past few days… Maybe that’s why, of course. I decide that I will not do anything and try to ignore this, hoping this will go away.
Furthermore, my intestine is also failing and for the time being everything stays very tight… with a full, bloated feeling and cramps as a result.
I try to keep myself busy during the day and try to walk around the house a bit now and then. I do notice that I am still very tired and can’t make it through the day without taking a nap.

Day 6: Oops… what is that? I get up and have really stinging, burning pains in my left buttock. I think this is because of the nerves that wake up after the operation. Very annoying, but will hopefully leave soon. Or not?
I think this is due to a lack of movement and try to do a bigger walk today (‘big’ still is quite relative… since more than 100m is for me already quite tiring at the moment).
The pain in my left buttocks remains constant throughout the day and it seems as if the painkillers, which I still take, have no effect on it.
The walks are good for my mood though, because the sun is shining and it feels like spring has arrived in Zurich. I see the first blossoms and the first lizards of the year. The lizards are also happy that the sun is shining and they happily jump into the sunny walls of the church.
As the pain in my buttock seems to have gotten worse after my second walk of the day, I’m not sure that the walk was really good for my body.
In the meantime, my husband has also fallen victim to Netflix and, just like me, is suffering from an acute Suits-addiction. Only: 10 times worse than me and I can’t get him to stop.
Besides this, he is of course very sweet and he helps me to get through this difficult time.
Update on my lazy intestine: still I’m feeling very constipated and blocked. I’m slowly getting a bit worried because it’s already been 3 days now. I’m trying to do everything I can to help: Eat lots of ripe fruit, drink fig syrup, magnesium powder, … hope it comes soon, otherwise it’s time to be alarmed.

Day 7: Hallelujah, a (very little) child is born! I think I am eligible for the new (dark) edition of the Guinness World Book of Records for the smallest number 2 in the world.
But hey, it doesnt matter… turd = turd. 🙂 I’m happy and relieved with this little victory and hope for more of that. Throughout the day I have to go to the toilet 3 or 4 times more, each time with small mini-drops. Cute… but also very relieving.

The pain in the buttocks is unfortunately even worse than yesterday and suddenly, I panic. What if this has nothing to do with the surgery, but is just an inflammation of the sciatic nerve due to wrong postures in the hospital bed or too many sitting and laying around?
I google for a while and the symptoms described look very familiar to me.
I breathe a sigh of relief, because I am glad that I now know what it is. Of course I already thought the worst: 1) bone tingling – 2) leg pain – 3) leg numb – 4) leg amputated, …
😉 – Sorry !
According to Google, an inflamed sciatic nerve can be treated at home by resting, alternating between ice bags and hot water bottles and Ibuprofens (which I take anyway).
There you have it, my ‘long’ walks of yesterday might not have been such a good idea after all. But I really can’t just lie down or sit down all day anymore, so I decide to take at least a little detour today, before I install myself in the chair with Netflix (so also with my husband), a good book and my Endo diary.

Day 8: 1 week after the surgery and my abdominal pain is pretty much ok. I feel that I still have to take it easy, for the inner wounds, but I don’t have any pain. I still am a bit careful with what I eat, but I dare to eat a slice of dark bread and a bit of avocado.
Unfortunately my intestine still doesn’t work properly. Small rabbit droppings, that’s the only excrement I produce, with a lot of effort and patience… Nice detail, I know. 😉 I will try not giving too many details…
Furthermore, my buttocks and thigh hurt extremely, so I decide to call the surgeons practice for advice.
They prescribe me a heavier painkiller for that, as it is probably nerve pain… it might be that the nerve got damaged during surgery…-Lyrica is the name of the medicine. It’s actually an anti-epileptica, but it should also help with nerve aches. Hopefully this will bring some relief.
The bowel movements should have to start again slowly, they thought – just light and healthy food, which I’m really trying to do.

Day 9: The painkillers don’t seem to help yet and pain in the leg and buttocks remains terrible. Especially sitting on a chair is a torture. Or no, the worst part is sitting on the toilet… never knowing that the toilet seat is so damn hard. No one can invent a toilet with a pair of air cushions?
Lying in the couch or bed is only possible with a large pillow under my leg, so that my upper leg and left buttock are supported a little.
I seem to be more tired because of the heavier pain killers and a little slower in my mind. Maybe this also becomes clear in my writing style?
The persistent pain slowly starts to work on my mind and my husband gets it on his nerves from my complaining… which I understand, but I can’t change it. I actually try to stay positive as much as I can, but sometimes the pain really is getting too much for me.
Intestines are still the same song. Only in rabbit size, very painful and very little.

Day 10: Pain and constipation. Story continues. I send another e-mail to the surgeon to ask for a remedy and they immediately call me afterwards to set me up for an appointment with the surgeon tomorrow, to see what’s going on. I have a bit too many problems now and we are already 10 days after the operation. So to be continued…


Day 11: I get up and get ready for my first real big trip: an appointment with the surgeon at 10.30 am. The weather is fantastic and I’m really looking forward to going outside. Of course I’ve been outside for a little bit of walking, but taking the tram and going to the other side of Zurich (to the lake) lets me do a little dance of joy. Feels like a small holiday. 🙂
So I start my first post-operative trip and since my pain is the worst when I’m sitting, a standing tram ride is no problem at all.
I even have time for a delicious Latte Macchiato before I go in, which I quietly consume in the sun.
I register at the reception and take a seat in the pleasant waiting room, with a flickering fire screen. The surgeon arrives after a few minutes, is friendly as always and waves me into her office.
I tell about my complaints, especially about the nerve pain in the leg and buttocks and she soon reassures me – this is apparently normal and can take up to 6 months… (WHAT?)
But apparently the pain can be brought under control with the right dose of Lyrica. She advises me to increase the dose a bit and see what happens. The problem with this medicine is that it can take a while to take effect, so you always have to wait a week after increasing the dose. That means that I have to wait until Monday before increasing the dose. So let’s bite through…
She’s also giving me a prescription for a laxative. I accept this gratefully, because now I also get it on my nerves from that constant feeling of constipation. That intestine has now had enough time to do its Job himself. I’m stepping in now.
After the visit to the surgeon, I make a detour along the lake and then go straight to the pharmacy to get my new life-saving equipment.
In the pharmacy they start to know me (unfortunately) a little too well.
Pretty strange for someone who until recently has never taken any medication (except Ibuprofen during my period against endo-pain). :-s

Day 12: 1 day with laxatives and I’m starting to go to the toilet a bit better. Still a strange feeling in my intestines, but the rabbit turts have become narrow, long sausages in the meantime. (Very good – this yummy description again. I know.)
I’m hoping this will improve in the course of the next few days…

And so it did. The diary went on for 2 more weeks, but the hardest part were definitely the first 12 days post-OP.

My intestines went back to a semi normal rythm About 3 weeks post surgery, allthough I still today (6 months post OP) have to watch that I eat enough carbs, fruit and don’t exaggerate with sugar, chocolate, alcohol and coffee…

Also the nerve pain has gotten a lot better in the meantime. allthough I switched medicine in the meantime, from Lyrica to Saroten. Saroten for me worked a lot better to control the nerve pain without having too big of an effect on my mood and energy. Lyrica always made me feel fuzzy, apathic and slow and I was also a bit scared of the effect it might have on a possible pregnancy… Lyrica is still quite new on the market and there are not a lot of studies yet about this drug…they don’t really know what the risks can be for an unborn baby, so I didn’t really want to risk this. So I switched after 2 months of Lyrica, to Saroten and was already able to halve the dosis, 5 months after surgery. My plan is to start slowly to stop taking Saroten by the end of October 2019, hoping that by then, my nerve pain should be gone (or almost gone).

7 Comments Add yours

  1. bekkibee22 says:

    You should be proud of yourself for sharing I know it tough, but it’s good to raise awareness, I’ve been through the same and have more on the way. Sending love to fellow spoonie sister and of course a new follower XX

    Like

    1. EmmannuelleT says:

      Hi Bekkibee22, thanks so much for your kind words. 🙂 I agree, it’s only by talking/writing about it, that it will get the attention, research and funding it deserves. I look forward to staying in touch. Have a great day! Emmanuelle.

      Liked by 1 person

      1. bekkibee22 says:

        Thank you, absolutely right and I look forward to staying in touch and reading your blogs. Thank you Becki x

        Liked by 1 person

  2. kimi says:

    Wow, your procedure sounds a lot more intense than mine was. I was able to go home the same day after surgery. I hope your make a full recovery and all the lingering nerve pain!

    Like

    1. EmmannuelleT says:

      Hey Kimi, Yes it was quite intense indeed. the surgeon was also extremely surprised, that there was endo in soooo many places in my body. Do you know what stage endo you had? Thanks for your lovely message and I wish you a nice weekend! 😘

      Liked by 1 person

      1. kimi says:

        I’m sorry to hear that. I didn’t ask about a stage but I know it was likely only in my pelvis. It was worse in my first surgery. I had a large endometrioma on one of my ovaries. Still was able to go home the same day.

        Like

  3. EmmannuelleT says:

    Wow, that is really quick. Maybe you are just really tough. 🙂 I was really completely weak for 3-4 days and unable to work for at least 4 weeks. Thanks for commenting. I wish you a fantastic day! x

    Like

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