Endometriosis: how it began, searching for answers, surgery and how I have begun to heal myself. | Story and Co

June 25, 2020

Endometriosis: how it began, searching for answers, surgery and how I have begun to heal myself.

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This is a story of hope and encouragement. I hope this can help and possibly lead you in the right direction but also show you that you can get better, you don’t need to live in chronic pain and you can regain your life and heal. Everyone is different but I know reading other people’s stories helped me throughout my journey so I want to share mine with you. This is written 6 weeks after my surgery, I am still healing but my story continues but it is a positive one. This is my story, I am not a health professional, please seek medical advice.

How it began: the signs and symptoms.

One week after returning from our AMAZING UK and European holiday in March 2020, on Saturday night, I started to get excruciating stomach cramps and abdominal pain. I thought I had food poisoning. The pain got worse as the night went on and it felt like I was in the early stages of contractions and labour pains (without being pregnant). The next morning the bloating started. I looked like I was 7 months pregnant. My stomach remained bloated and hard as a rock for the next 2 months until I found answers. 

I waited 2 weeks until I went to the doctors. I wasn’t sure what it was, we had just been tested for COVID-19 (which came back negative), but I thought possibly I was getting a bad period (however never really have had painful, heavy or long periods in the past). These 2 weeks was torture. I was in constant pain every single day. Just getting up to go to the toilet was extremely painful. A few days after the initial pain, I started to get pain when I would defecate (the final stage of doing a poo or a fart). The pain was indescribable. I would be on the toilet (I wasn’t constipated and my stools were normal) it was just when it ‘came out’ I got this extremely painful spasm and cramp that actually took my breath away. I was screaming in pain. After this, my stomach would get even harder and the cramping would begin. Constant cramping and pain in my abdominal region. It wasn’t to a particular side it was in the whole region. In the beginning, I thought I did start from the rib cage down to my pelvis. I had never experienced bloating in the past and my stomach was huge. I have had 3 children, and after each child, I always lose weight in my stomach region first, I always have had a flat stomach so this was very unusual for me. It was very hard and the pain was constant. I completely lost my appetite and after eating a very small amount I was full, which was very unusual for me and later has caused concerns for the doctors.

Seeking answers:

After two weeks of constant pain and bloating and struggling to look after my 3 children little alone myself, I went to my gp on the Monday. Because of COVID19, a lot of testing was restricted and elective surgery and procedures were only allowed for emergency cases. We started with blood tests and abdominal and pelvic scans. My blood tests results came back that I was highly inflamed, my c-reactive protein results were through the roof and very high at an alarming rate. This is an indicator that the body is under a lot of stress and is highly inflamed. My urine showed I had blood (not visible to the eye) and white cells which indicates disease in the body. My gp is great and made some calls and the next day I was seeing a gastroenterologist. After meeting with him and going over my family history and noticing my iron wasn’t effectively-being transported to around my body he booked me in then and there on the stop for surgery that Friday. As soon as I got home, I had to start my prep for the colonoscopy and the endoscopy. During this time, I knew people had this procedure cancelled due to COVID and it is was really only for emergency cases so I did start to worry a bit at this stage.

Emotional and trauma started to resurface:

The prep was really difficult because I was in a lot of pain and my stomach was still very big (even with fasting, only having water and the medication for 3 days). It was in constant pain and I was extremely weak. The unknown of not knowing what was happening during COVID and getting symptoms I had never experienced before. I was so weak and I was struggling to look after the kids. My uncle who usually helps me couldn’t come up because he was self-isolating because of COVID (he is over 70 years old) and hubby had gone back to work as we had been away for a month then home self-isolating for 2 weeks. My hubby is wonderful and organized all the meals, and would come home early, do all the washing and bathing of the kids. But I felt completely helpless. I was becoming a ‘sick’ mum and that killed me. I didn’t want this and I didn’t want my children to see me like this. I had struggled for years (20 years) with an undiagnosed illness and chronic pain, being misdiagnosed and seeing so many doctors, until later finding out I had Lyme Disease. You can read more about my Lyme story here. I was in remission from Lyme before I fell pregnant and I was determined to not be a sick mother. Unfortunately, after having Hunter (my eldest son) I had emergency stomach surgery 4 days postpartum which was one of the most traumatic experiences I have been through, the doctors didn’t know if I would make it, I had to say goodbye to my newborn son and husband before going into my surgery as they thought my stomach could burst as any moment. You can read more about that here. So the unknown had resurfaced and I was scared. I was in so much pain and I felt like I had no control over my body. We had just come home from the most magical holiday, not only a huge career highlight for me travelling with NEXT but I was able to take my family and uncle on a European holiday, life was so good. This also triggered memories and grief resurfaced with losing my mum. I lost my beautiful mother unexpectedly 6 weeks after I got married to my soul mate and the same day I found out I was pregnant with my first son. You can read more about that story here. So as you can imagine my emotions were all over the place and I felt like I was completely out of control and I thought I was headed for deep depression. When I had the procedure, walking into the surgery room in my blue scrubs just made it all come back to me and I felt like my heart was breaking all over again.

I didn’t want this life for me and I didn’t want it for my kids or my husband. I was determined to find out what was wrong and be healed.

During this time a few other trauma and emotional inner child issues had risen within me. I was feeling isolated and I was finding it difficult to really convey how much pain I was in physically and now emotionally. It was a combination of the emotional PTS from Lyme disease and unknowing (also losing a lot of friends when I was younger when I was sick and not feeling loved), the PTS from loosing mum and then PTS from the surgery after having Hunter. I felt like I was drowning, I felt like I couldn’t breathe and I felt like no one understood. My husband is so supportive and was there every step of the way, but I didn’t want him to have a chronically ill wife, I knew what pain was and I didn’t want to go down that road for him or for me. The cancer word was thrown around but this wasn’t even the worry for me, it was this emotional PTS that was resurfacing.

Starting to get answers:

My procedure came back clear (as in, internally the colon and stomach were all fine) during these procedures they can only see internally not externally. But my surgeon wanted me to see my obstetrician/gyno asap as he suspected endometriosis. Unfortunately because of COVID my OB wasn’t taking appointments (only for his pregnancy patients), this did cause more stress because I felt comfortable with him, he had delivered my 3 babies and helped me during the stomach emergency surgery. I felt safe with him. So the fact I had to see a new surgeon when I was already feeling emotional just added to the stress. But my GP was great and got me an appointment immediately with a wonderful gynaecologist that has specialised training in endometriosis and a particular machine in his surgery that can pick up things that most scans can’t. This doctor was lovely and caring and was so helpful. His machine found straight away that I had endometriosis and my uterus and my ovaries were all stuck together.

A blessing and unanswered prayers can often bring miracles.

He booked me in straight away for a complicated operative excision laparoscopy, hysteroscopy, uterine dilation and curettage. Again because of COVID I needed to be deemed as an emergency to have this done which I was. I was still in extricating pain and my stomach was still huge. Going over my history with the specialist he was shocked that I didn’t have a heavy period or painful ones. I had endometriosis in the past (about 12 years ago), it came on very suddenly. I was at home with pain on day, I couldn’t walk and I was rushed to the hospital where they did a laparoscopy. I had stage 1 endo but from then on I was fine, I fell pregnant straight away with my 3 children. So during this investigation, it was tricky because my stomach wasn’t usual. In the last few months, my period did start to get a bit heavier but I had only still just was getting my period back as I was and still am breastfeeding my youngest child. As the doctor was doing more investigations he wanted me to get the ovarian cancer testing has I have been deemed high risk. This is another process we are going through and at this stage, I needed to focus on this constant pain and to get better from this.

The surgery:

My surgery took 6 hours (which is extremely long, they had only anticipated it going for 30-40 minutes). I was covered in endometriosis. As suspected my rectum was stuck too, which was causing the spasm when I would go to the toilet. It is a very complicated surgery with high risk. Unfortunately they hit my bowel and an emergency bowel surgeon was called in to be present throughout the surgery. This is a risk you take with this surgery, it is very uncommon, but unfortunately it happened. My recovery in hospital was only supposed to be overnight but I ended up staying 4 days because they were thinking of having to completely open me up and fix the bowel (if the bowel started to leak, it would have gone in my bloodstream). After that surgery I would have to spend weeks in intensive care. I couldn’t even sit up for a few days, I couldn’t breathe if I stood up because of wind trapped in my diaphragm but they weren’t sure if it was the bowel. It was painful and scary. So laying in the hospital, my hubby brought Evie in twice a day for me to breastfeed her (so reminiscent of my newborn days with Hunter), and

this is when I started to heal, not only my body but my heart, soul and mind.

I wasn’t allowed to leave until I had a poo and they had monitored me and made sure my bowel was ok. I was laying in this room and I said, I have gone through so much in life, and I have survived and come out stronger, I am going to do it again. I got my phone and started to research healing. Tapping came up. I watched a quick video on it and I started to tap. I had never done this before. Within 10 minutes, I opened my bowels. I could not believe it. I thought the mind is so powerful, I had dabbled in this before but I was determined to heal myself this time.

Coming home and the road to healing:

As we were leaving the hospital, the nurse was telling me to be very careful taking the Voltron and the endone as they aren’t good for your liver, bowels and they are addictive. The moment I walked out of that hospital I didn’t take any of those painkillers. I pushed through the pain as I didn’t want to create any more problems for myself. My recovery was 6 weeks and I was determined to heal. The doctor has said the endometriosis can come back and some people have multiple surgeries every year. WHAT!!! No way am I going through this again. Not the pain, not the trauma, I am not being a sick mum and wife! The doctor also said, the first period I get after the surgery will be the worst, very painful because I am all raw internally from the surgery. When I got my period for the first time, other than some stretching feeling, I was fine. I believe it has to do with the steps below I took. 

So I have spent the last 6 weeks immersing myself in healing. These are the steps I have taken to start and heal myself. This is an ongoing journey which I will be sharing and share every day on my instagram @storyandco which I hope inspires and encourages others to do the same. 

  1. I watched the Netflix documentary HEAL. I highly recommend this to anyone. 
  2. I came across the Medical Medium, I watched his IGTV (AMAZING!), I bought his book Cleanse to Heal. Please research the medical medium’s story. He has healed millions of people. Everything he says makes sense and resonates with me. The naturopath that healed me with Lyme disease was saying very similar things to him so I was aware of the practise, but the medical medium goes that step further, than any other naturopath or doctor I have ever come across. He gave me ANSWERS when no-one else has, understood my symptoms better than anyone and the best part he has EMPOWERED me and taught me how to heal myself. I will share more on this as my journey continues but I recommend:
  3. Do the medical medium’s 3:6:9 cleanse which is a 9 day cleanse. After the 9 days, my stomach/bloating decreased by about 80% and my chronic pain and fatigue was gone. I repeat this once a month until I am symptom-free and then will do once every 3-6 months for maintenance. 
  4. Celery Juice. Every single morning I start the day with 2 glasses of water with lemon. Wait 15-30mins then have straight celery juice (with nothing in it, no water, ice or lemon, not blended but juiced and straight on an empty stomach) I then wait 15-30 minutes before eating breakfast. My bloating has now completely gone. Find out more about celery juice healing powers and movement here
  5. My diet has radically changed, I don’t eat the ‘trouble maker foods’ that the medical medium suggests (I might introduce later down the track but for now I don’t eat them), so no eggs, pork, dairy, radical fats for example. I will discuss this down the track in more depth.
  6. Calorie density. To find out more about this check out this post here.
  7. Inner child healing and spiritual therapy. This has been so amazing and I am currently working with Dianne from the HEAL documentary. We do the session via ZOOM and I am truly healing my trauma and PTS. You can read a bit more about some of my trauma here and inner child work here and here. I will do another blog on this as we go along. But it involves inner child healing and work, journaling, self-validation, visualisation, anchoring, sacred anger work and interpersonal skills and healing.  

I am feeling absolutely amazing. At the beginning of the year, I was doing so much. Things were starting to change inside me (as they have been over the past 5 years). I was so sick with Lyme Disease vomiting for 2 years straight, I started to heal but then was hit with the grief storm with losing mum so it put everything on hold. This year I thought to myself, wouldn’t it be great if I could have 6 months to focus on my health and get better (this was before I was hit with the endometriosis). God listened. He truly did. COVID happened and whilst it was devastating and heartbreaking the lives it took, but it allowed me time at home with my kids, to heal. I really leaned into God and I have let him guide me. He has always been there for me, he has never given up on me and is getting me through this storm now. But I can definitely see the rainbow, and I think I feel more whole than I ever have in my life. My journey continues but for the first time in my life, I am not looking at the future, and the end result, I am right here, right where I am meant to be and I am enjoying the process so much. Those who live in harmony with themselves, live in harmony with the world and that is exactly how I am feeling and aim to live the rest of my life. 

6 weeks after surgery

love + grace

Jo xx

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