On Thursday November 2nd, 2017 I went into surgery to have a wide excision via Laparoscopy to remove multiple cysts, endometriomas (chocolate cysts) and scar tissue which resulted from deep infiltrating Stage IV Endometriosis. This has been a difficult time in my life. I decided to write about my disease and experience, with the hope that I can provide an informative read for those who might also have the same disease or know someone with it. I hope that it can help others to feel more informed about the procedure so they can mentally prepare more than I was able to. Part one can be found here.
THE WEEK BEFORE SURGERY
The week before my surgery date, I went to my doctor to fill out a pre-op form. There was no prep for this surgery, except I was suppose to stop eating and drinking at midnight before my surgery. I also had to make sure not to take any ibuprofen or supplements with willow/salix a week before surgery, as they are blood thinners. I had no idea what to expect or how to mentally prepare for this procedure.
HOW TO PREP FOR SURGERY
- remove all nail polish
- remove all jewelry and piercings
- go makeup free to the hospital
- wear loose and baggy clothing to the hospital, ensure no high-waisted items are worn (very low-rise underwear and sweat pants)
- buy cough candies (your throat will hurt and get dry after surgery due to the tube they insert down your throat, the last thing you want is to have to cough after surgery)
- ensure that you have lots of pads on hand (you cannot use tampons for a month afterward – nor will you want to. I recommend Natracare)
- buy a laxative, as the medication and surgery will make it really difficult to go to the bathroom after (I recommend RestoraLAX as it is really gentle)
- have lots of food around that is gentle on your stomach and high in liquids (soup, applesauce, smoothies, etc)
- practice with the person who will be taking care of you how to help you in and out of bed – they should put their arm behind your back to lower you slowly with all your weight on their arm and then they should put their arm out when you want to get up so you can use your arm strength only to pull yourself up and then they will have to help you lift and lower your legs – basically find something that works for the both of you that requires no abdomen muscles (if the surgery is just a searching procedure you probably will not need this level of help, however after having an invasive surgery I definitely needed someone to help me in and out of bed for 2 weeks after surgery)
- have a bag full of stuff you’ll need, like a phone charger, soup, etc. ready for the day of surgery
THE DAY OF SURGERY
The day of my surgery, I had to be at admitting at 8:00am. I was given my own bed in a room with someone else awaiting surgery that day as well. I was given a dress and a robe to change into – no bra or underwear allowed. Ask the nurse assigned to your room to provide you with a container or a bag to place items that need to be with you up until the surgery if needed (like eyeglasses). I had blood-work taken, then I laid in bed until 11:45am, when I was finally called for my surgery. I was so tired and hungry that this wait passed slowly, I recommend bringing a book or some form of entertainment. I was walked into a room right outside of the operation room where I had multiple professionals come and talk to me and ask if I had any questions. The whole time I was trying to suppress my emotions and rising anxiety as they explained the procedure and the risks associated with it. I had to sign some forms then I was walked into the operating room.
At this point, they removed my glasses so everything gets a little foggy (literally). I had about 8 people in the operating room to assist the surgeon with the procedure. I had an IV inserted then an oxygen mask placed over my nose and mouth. Everyone was very friendly and helped to make me feel as comfortable as I could possibly feel. They covered me in a heated blanket and then I was out.
For this next part, I am summarizing the operative procedure report that I received after surgery – just a warning, it gets pretty graphic.
After I was given a general anesthetic, I was positioned properly, sanitized and compression stockings were put on my legs. A catheter was inserted into my bladder and a speculum was placed into the vagina as the cervix was grasped with a tenaculum, then the cervix was dilated. A uterine manipulator was then inserted through the cervix and into the uterus. Then they inflated my uterus and lower abdomen with gas. 4 incisions were made, one in my bellybutton, 2 on my left side and one on my right side. The smaller incisions were about 5mm large, and the bellybutton incision was about an inch long. From here the surgeon inserted a camera and the tools they needed to manipulate the organs and remove the disease.
First the surgeon mobilized my bowels out of my pelvis, which helped to examine the organs. Here it was noticed that I had bilateral endometriomas and extensive adhesions tethering my ovaries to my pelvic sidewalls. My ovaries were observed to each be bigger than my uterus due to the endometriosis wrapped around them. My ovaries were mobilized and drained large amounts of endometriosis fluid which they suctioned out. Two ovarian cystectomies were performed. My cysts (that ranged from 6cm in size and smaller) were pierced and excised. The surgeon continued to cut out all of the endometriosis that tethered my organs to each other and my pelvic wall. Then very thick and nodular endometriosis was removed off of my bladder and ureters by blunt and sharp dissection. The surgeon then removed lots of endometriosis off of ligaments, internal cavities and made multiple other dissections to try and access and remove everywhere that the disease had spread. The surgeon had to use coagulation and Interceed in many areas due to the extensive amount of material that was removed. There is about 2 more pages detailing the rest of the procedures that were performed, however this is because I had a very severe case of endometriosis – so I will skip them. Then, the surgeon found a 2cm nodular cyst on my right bowel that she had to leave because it will require another surgery and a diverting colostomy, however she was able to remove the rest of my disease. Normal surgeries are 1 hour long, however mine was about 3 hours.
I remember waking up in recovery and getting asked how much pain I felt, on a scale from 1 to 10. It was definitely 10 but I said “6 or 7” because I knew that the amount of medication that they would give me would only make me feel worse later (more nauseous and groggy). I was in and out of it for a while. The next thing I remember is waking up back in the room, with the nurse giving me a cup of water. It was 4pm. My surgeon had left a handwritten note for me to read, which I greatly appreciated during that time. I slowly drank some water then fell asleep again. I woke up about an hour later and the nurse wanted me to try to pee. I cannot imagine what my face looked like as I looked up at her but I was horrified at the thought of having to move. I also knew I wasn’t going to be able to pee, however she was persistent. She put out her arm and I used my ARMS ONLY to get into a sitting position, which then she let me sit and told me to do some deep breathing. After 30 seconds, she helped me stand and I shuffled over to the toilet. I could not sit down due to the extreme pain so she had to lower me onto the toilet (at this point a burp just burst forth and she laughed and said that was normal and a good sign that my body was trying to expel the gas that was pumped into me). I could not pee, however there was a lot of blood. She gave me a pair of hospital underwear and a pad and helped me back to my bed.
The pain I felt after moving for the first time I will never forget. I have been through multiple surgeries in my life, and had to deal with severe endometriosis pain for about five years, but never have I felt pain like that. I couldn’t help but cry out in pain after. It felt like someone was mixing my abdomen up with a knife then repeatedly stabbing it. This is the part I wish I could have mentally prepared for – I would suggest sitting down with yourself in front of a mirror a week or so before the surgery and just saying “I will be in extreme pain, but I will get through it, I will heal” or something… because that was hell. I laid still for some time and tried to eat some soup. Make sure that you only eat VERY LIGHT FOOD for the first 2-3 days after surgery. Lots of liquids and soup. This will ensure that you do not vomit and also will help to get your bowels moving again as well. At 8pm the nurse woke me up again and helped me to pee. I was finally able to pee, so I was sent home. The first few times you pee, you will feel a terrible burn – this is due to the catheter that was stuck up into the bladder. The drive home was painful (if you are the driver try to drive slow and avoid bumps). If you are helping someone who just had this surgery, please be gentle with them and be patient… I am going to say it again… patience is greatly appreciated during this time.
I got all set up in my bed, I had about 6 or 7 stacked pillows so I could lay like I could in the hospital bed (you’re going to want to do this, as lying flat is not recommended for about 1-2 weeks after surgery). At 9pm I just laid there with tears falling down my face – I was having such a hard time processing everything, all the pain, all the fear and how much I felt like I couldn’t get through this. I stayed like that for about 3 hours, I think I was in shock and it was my body’s way of trying to cope.
Make sure while you are in a good state of mind that you (or someone else) writes down and organizes all of the times you need to take medication and the pain killers and set alarms ahead of time because you do not want to fall behind on taking them.
WEEK 1 AFTER SURGERY
Let me tell you, the entire week after my surgery was hell. It seemed like there was no improvements whatsoever as each day progressed. I want to reinstate the fact that I had a severe case and a lot of work done, so not everyone’s experience will be this bad. However, the take home points are:
- do not sit up or lay down yourself, get someone to help you
- do not use your abs whatsoever, only use your arms to get you up and down
- when sitting up, or sitting in general, do not lean forward or crunch your stomach or hunch over in any way
- for the first week I only wore a nightgown and hospital underwear, so ensure that you have baggy t-shirts or a loose dress with loose underwear that you can wear for maximum comfort
- you will bleed for about a week after surgery, due to the uterine manipulator being inserted during surgery. As long as it is not very heavy, you do not need to worry (if you are filling a pad/hour go to your local emergency room)
- while I slept, I would lay on my back and tuck my hands under my bum – just so there was no chance that while sleeping I would roll or that my arms would hit my incisions
- your body will try to get rid of all of the gas that was pumped into it, however it is way too painful to expel gas, so the only way you can help yourself is in-between napping, walk around for 5 minutes (I paced my living room) then I would sleep for a few hours and repeat. It helped to get the gas moving and it was easier to deal with when standing/walking
- speaking of gas, you will experience pain in your shoulders and shoulder blades, as that is trapped gas. Again, walking around very slowly is about all you should do during the first week – it will help
- take your medications on time
- do not feel guilty about resting. Sleep as often and as much as you can. Lay around – as boring as it is (I had a pile of stuff I could easily reach in my bed, such as knitting, books, my laptop, etc)
- do not push yourself, take an extra week or two off work and cancel any commitments (you’ll thank me later)
- find a good support team (a combination of personal boredom leading me to doing things I shouldn’t have been doing during week two and impatient caregivers resulted in a herniated bellybutton incision – a painful experience that I don’t want to happen to anyone)
WEEK 2 AFTER SURGERY
After 10 or 11 days I ran out of morphine to take, and my body went through a withdrawal period for 3 days afterward. I was really scared that I had gotten an infection, however I monitored my actual temperature and it stayed at 36.8ºC. I felt very cold then very hot, very nauseous, had bad headaches and got very angry and short tempered – it took 3 days for that to wear off.
Two weeks after surgery is when I came off a lot of my medication and I felt a little more raw. The pain and the emotions were more noticeable. I started to feel very sad, abandoned and lonely. The friends and family I thought would reach out to me didn’t, and I felt utterly and completely forgotten. I would just lay in bed in pain and wish someone would talk to me – I was so miserable. I think that maybe some people did not realize what I was going through, so they did not understand – however if you know someone who is going through this surgery – please reach out to them and ask if you can get them anything, or hang out with them, or even call them. It will be greatly appreciated as this time is a very emotionally draining experience.
WEEK 3 AFTER SURGERY
Standing for long periods of time was very difficult and walking was a slow procedure. I tried going to class for the first time and I found sitting very difficult and uncomfortable – I would come home and lay in bed for the rest of the day as I was so exhausted from that minimal activity. I still felt pain and was still a little bloated/swollen. I was so exhausted during this period that I was not myself during the times I had to be out or in class – I was grumpy and irritable and had little patience. I was so uncomfortable and tired and had no motivation to be involved with anything at this point.
FIRST PERIOD AFTER SURGERY
The first time I got my period after surgery, I was so upset because for the first time I was starting to feel a tiny bit better – then my period knocked me out for a week. Expect a very heavy flow with lots of clots (apparently that is normal). It was very painful, and the pain actually spread into my hips, thighs, abdomen and chest. The first 2 days I actually could not go to school. It lasted 9 days and I spent most of it lying in bed with a hot pack and extra-strength Tylenol.
3 MONTHS AFTER SURGERY
Here I am, writing this three months after my surgery. I am still insanely exhausted and my immune system is very low. My surgeon told me to expect waiting 5-6 months after surgery to get my energy levels back. I am finally able to move around more and wear jeans. I have started physical therapy twice a week because the surgeon and physical therapist discovered that after my surgery, my body went into shock and my organs went still and all of my surrounding muscles freaked out as well. I see two physical therapists each week, one who specializes in working with my uterus and pelvic floor health and another one who helps me with everything else (correcting my posture that I had adapted to feel less pain, learning how to properly use my muscles in the surrounding areas, and ensuring safe movement with my hernia). Physical therapy is a HUGE help – highly recommended (but expensive – so save up before surgery).
Every night I put some oil on my incisions and gently rub them – this is to make the scar tissue more malleable. I do the gentle exercises my physical therapists have told me to do each day and I try to sleep as much as I can. I still sometimes feel pain or an uncomfortable feeling in my abdomen, which is to be expected. School is difficult as my energy levels are still quite low, but I am managing. Each week I heal more, and each day I realize how proud I am of myself for getting through the most difficult thing I have gone through in my life.
The current “treatment” I am on is to take a form of birth control every single day until I reach menopausal age. Being on continuous birth control does not slow or prevent endometriosis, instead it ensures that I no longer get periods. I am worried about this treatment – the side effects are troubling. I will make sure to write up updated post if/when my treatment changes.
My other forms of treatment include continuing to stay on a strict Autoimmune Paleo AIP diet, which helps to lower inflammation in the body, therefore making living with endometriosis more manageable.
Here is the end of this very lengthy post – if you have made it to the end, thank you for taking your time to read this. It is my hope that awareness is spread about this disease and that a better treatment is found.
Part one of this post can be found here.