Endometriosis: A Husband's Perspective
It's 2.30 in the morning and she wakes me up in pain. I'm not sure what I am meant to do, other than comfort her. I know it must be bad, because she hasn't slept and rocking on the floor in a foetal position is her way of easing her pain. Even with the prescription painkillers, that normally take the edge off...
She was fine today; she went to our daughters Easter Hat Parade at daycare, then went and did the Easter family BBQ shopping with our older daughter. Shows how unpredictable this horrid disease can be.
Last week was another shocker, 10 days late for a period, I must admit I kind of got excited. But I could tell from the pain she was in something wasn't right. Then it hit her, a packet of pads a day. She fainted, there goes her iron again. Doctors schedule another iron infusion, like it's just a hair appointment.
I guess, I’m lucky my work now understands the "I’m sorry I can't come in today" phone calls. Because when this disease decides to play up it's all hands-on deck. I know she tries to soldier on through the pain, and be the best Mum she can. But some days that's just too much to ask from a woman with stage four endometriosis.
I watch her sit down sometimes and jump slightly. I forget why she does that. And will look at her with that “what the hell are you doing look”. Then she will give me the "it hurts on that side" as she moves to try and get comfortable. It took me a while to understand that even sitting down the wrong way can sometimes cause pain for her.
The birth of our second Daughter was what put this disease in perspective for me. Everything was going great, we just came back from a weekend away before we were set to become a family of four. She was 32 weeks pregnant. I was in the lounge and she was in talking to her mother in the study. I heard her scream in pain.
When I got to the room she was on the floor - in that exact round ball like position. What was wrong? We helped her into bed, I had work at 3am. She said she will be ok. But I could tell something wasn't right. I went to work and got a message at 7am. They had taken her to the hospital and waiting for test results. It was an 8cm cyst on her right ovary. It was twisting the ovary and cutting off blood supply. The doctors decided it needed to come out. It was dangerous for her and the baby.
The hospital prepared her for surgery, steroids every three hours until the next morning when they would operate. This was a big deal, being 32 weeks pregnant. Things could go wrong. NICU was prepared, a team of doctors and even a Humidicrib. This was real. They explained, having such a large cyst and being so heavily pregnant, we need to cut you down the middle of your stomach. There was no option for keyhole like her previous surgeries. I could see the look of fear on her face, but she agreed. Signed the forms and had her first shot of steroids in the thigh. The pain was obvious as the needle went in that these hurt - really hurt. I felt helpless, why was this happening? I kissed her good night and went home to get some sleep, knowing she's going to need me tomorrow.
I got there early, she had already had a shower and was in a gown. I kissed her forehead and reassured her, it's going to be ok. The doctors all came in, they went over the procedure and risks once again. I kissed her goodbye, she said to have lunch with Mum and I'll see you soon.
Eating our lunch, we got a phone call - "you need to come back to the hospital immediately" I felt sick. We were only across the road, but it felt like an eternity to get back there. What was even wrong?
Her mother and I walked into the hospital to be ushered into the birthing suites. She's in labour.
We walked into the birth suite to a room full of doctors and nurses. I couldn't even see her, just hear her crying. The nurse explained what was happening - she came out of surgery and woke in labour. We are trying to stop the contraction and help with the pain.
She has a 23cm cut down her stomach, she's in labour and 32 weeks pregnant. She's crying and holding my hand. There's nothing I can do. 4 doctors, 3 nurses, no one could just stop the pain. Any woman in labour can probably understand the pain, but to add a 23cm cut down the centre of your stomach to the equation… and just waking up from surgery.
After two hours and a lot of doctors making decisions, medication to stop the contraction worked. The pain medication was working and she was calm. I didn't leave her side. They kept us in the birth suit with a nurse in the room for 24hrs. I knew this wasn't going to be easy.
They transferred her back to the ward and the nurse and I helped her have a shower. She was limited in movement because of the stitches and baby belly. Even though she was in a hospital where care was given I couldn't leave her like this. I slept on the couch next to her and didn't leave, I couldn't leave. She needed me, and to be honest I don't think I could have slept at home. She was propped on pillows and to even turn would hurt, her belly would pull the stitches and laying on her side was not an option.
The real challenge came when she needed to do number two. I helped her to the bathroom, it's something I didn't think I'd have to do but I could see the pain she was in and my love was greater for a woman with a disease that is hurting her. She couldn't wipe her bottom, her belly and stitches hurt too much for her to reach. I did it, I wiped her bottom for her. I did it because I love her, because I wish I could take this pain, I wish it was me and not her. When I looked at her she had tears? Why? I'm embarrassed you have to do this."
When the doctors came in to see her, they explained that the cyst was an endometrioma. A blood-filled cyst. She told us, in all her time as a GYNO and OBGYN she had never seen endometriosis flair up like this during pregnancy. It was all over the ovary.
Months on, our daughter was born healthy and happy.
That week out of each month when her period arrives, I know that she needs me, I know that week is the week were life turns to shit and the rock of the family needs us to be her rock.
Pain and bleeding for at least ten days. I'm not even embarrassed any more to buy tampons and pads at the local Woolies. The pain of that is nothing compared to the pain of endometriosis.
November 2015, there was no period. We were excited. A positive pregnancy test and ultrasound confirmed it. She was pregnant.
One day she woke feeling so sick and in pain? She went to the hospital with her mother and they said, the baby didn't look to good. But it's only five weeks so we suggest you do a repeat ultrasound in two weeks. The longest two weeks of our lives. Everything looked ok? But still no beating heart? This baby was not forming, there was something wrong. They booked her in for a D&C. It was all a little too much, the heartache and pain. Why was this happening?
She carried on and held the brave face she does even though I know she's hurting. It was over, the baby was gone and life had to go on.
She held it together, it was the week of Christmas and her daughters were her priority. We had a family gathering that night, but she was again in terrible pain. She went to her doctor, but her doctor was held up, she rang me and said, I'm coming home I can't sit here any more I need to just lay down. When she got home, her face was pale and I could tell something wasn't right. I let her lay down and took the girls to the local shops to grab a few things. I got home and woke her as we had to get ready for the family BBQ. I woke her with roses I had picked up at the shop hoping she would know that we love her and care.
We had a great night at her family’s house and came home, she took some painkillers and went to bed. It was my last day of work before Christmas so I thought she would be ok.
A message came through at work, Luke you need to leave, your wife is on her way to the hospital. I felt sick. What has happened?
I rushed home, to my cousin who had our daughters and she had gone to the hospital.
When I got there, she looked pale, ill, fragile. She explained to me what had happened - I woke up and made the girl’s breakfast, I felt ok. Then I had horrible pain, I stood up and blood poured down my legs. Followed by mango size clot. It hurt so bad. I felt so sick. I rang your cousin to come watch the kids. Our daughters had seen it all. And I'm still bleeding.
They took her for ultrasound. I waited impatiently. It was confirmed, there was remaining conception inside her that had caused a massive infection. She needs surgery.
They took her to a ward and started nil by mouth and a drip with antibiotics. I kissed her goodnight and said I'll be here first thing in the morning before surgery.
I couldn't believe this was actually happening. It was, and miscarriage, problems conceiving and higher risk of problems during pregnancy is just another thing that comes with endometriosis. - so basically, this disease had caused problems with her pregnancy, because of that she needed this stupid D & C and now things just got worse.
I was there first thing 7am, with her mum. Not long after they came to get her for surgery. We kissed her and told her it's going to be ok. It went on for longer than what was expected, I felt so sick. We just sat and waited...
They wheeled her in and she was drowsy from the anaesthetic. I felt helpless. The doctors came in within 20 minutes to explain how it went. There was left over conception of the foetus. There was a puncture to your uterus. There is an infection. And internal bleeding. When we lifted the uterus to stitch the puncture, there is endless amount of endometriosis. We couldn't do much as we needed to mend the uterus. You will need to stay on IV antibiotics.
Tomorrow was Christmas Eve, it didn't sit well with her. But she wasn't allowed to come home. I left and kind of felt empty. I got home to our girls and looked after them as best as she would.
I went to bed planning in my head how to play Santa if she wasn't home and to give them the Christmas surprise I know she would.
That next morning, I waited for her to call, it was 6 am and she text me a photo of the drip with her next round of antibiotics. I doubted home was an option. Lunch time came and I was thinking how I'll manage with her family gathering at her mums the next day for Christmas lunch then all my family were coming to our house for Christmas dinner. Let's be honest she's the driving force of these get togethers. Then the phone range, I can come home as long as I do nothing and rest. Her doctor knew she has two children and how she wanted to be with them. So, I promised I'd do it all. With the help of both sides of the family we made it all happen. Her day was short lived and ended up in bed from the pain. But I was grateful just to have her home for Christmas.
Months went on, painful periods, endless weeks of pain and crying. It got to June, she was a wreck. Then the worst happened, she started fainting. Fainting every day, sometimes two times a day. I was scared. My children were scared seeing their mother drop and lay out cold before coming too. What was happening!
After endless weeks of this, a million doctor appointments and hospital visits. It was evident that the endometriosis was now affecting her immune system. There was no other real cause!
Her blood pressure was constantly dropping.
And her body would no longer absorb the iron from the tablets she was taking. Her body was so low in iron that they decided to do an iron infusion at the hospital. That's ok we got this.
Or did we? She had the iron infusion and I took her home to rest. That night, I was on night shift. So, I made sure the girls were sorted and dinner done. I put them all in our bed and went to work. Then I got a message, I'm shaking, my Temp is 41, something is wrong. Off to the boss again, they just knew. I got home to find her shaking covered in four blankets and a head that felt on fire. We need to go to the hospital. She would not listen, "no more please - I just want to be in my bed. I'll get through this" she laid there shaking as if she was freezing but her body was so hot. She asked me to hold her to keep her warm and help with the shaking. I got the Panadol and water and once she took that, I held her. We road it out together. The next day we called her doctor. To cut it short, it was obvious. She had a reaction to the iron infusion. Her body couldn't cope with the levels rising. Her body went into shock. Her mother took her to see the doctor that morning to make she was ok.
I can't believe the disease has gone to this extreme.
Let’s fast forward to 2017, I've now learned that this disease is controlling, its debilitating, it’s painful, it is incurable. It's consumes her at random times. It's unpredictable. Some days are great, some days are ok and some days - I wish never happen.
One packet of pads is not enough for an endo period. Panadol does not work and rocking on the floor is the normal.
This mother, this fiancé, this daughter, this young 29 year old woman, runs a business, is a mother of two, runs a house and lives her life. She does all she can for her two children regardless of the pain, regardless of the bleeding, headaches, and being so tired she can barely function. I often find that on the crappy period weeks, running her business gets the better of her. She struggles and I do not mind for one minute stepping up and helping her get it done.
Her latest appointment with her Gyno, it's never an easy one. Her latest scan shows the pain is from her right ovary that's completely stuck to her bowel. So - let's inject you monthly with depo provera (apparently, it’s a drug they use for contraception – I had to be filled in on this one) instead of every three months, let's use it as a medical intervention. Then in 3 months, we will do a laparoscopy and removal all the scar tissue from the laparotomy and previous laparoscopies. We will need to move the ovary away from the bowl and so a clean out of all the endometriosis. This op will be longer and bigger than normal so you will need to be admitted for a few days.
She got in the car and cried - again there is nothing I can do! She has now started researching Chinese medicine, herbs and organic ways of healing. And you know what? I support her 100% - I'd do anything to change what she goes through. Or even take the pain.
I still sit here and think, how and why. Why hasn’t it stopped are the questions I keep inside. Because it drains me knowing this is for life. I just want her to feel better. There are days I feel selfish for wanting it to be over and her just to be better already. But this is our reality.
My advice to any man that is going through this journey, be patient, be present, be selfless. Love her unconditionally and know that even though we can't fix what they are feeling, the best thing you can do - is just support her.
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