Jo's story

When I was 12, I started to experience stomach pains, I was being sick a lot and was struggling to eat after a week to GP sent me to hospital for further tests. While there awaiting tests, I started my period, and so began the road of crap with endometriosis.  What followed was the usual pain and sickness, with the occasional bowel issue for fun. 

 

When I was 17, I again started to being seriously sick and after a week of throwing up I was sent to hospital. It was a suspected ectopic pregnancy. Despite knowing I wasn’t pregnant I went through many many tests to check and after 2 weeks they took me in to surgery because they couldn’t work out what was wrong. I was asked to sign a form allowing a hysterectomy if necessary, I refused. I asked them to find out what was wrong before they cut anything that serious out. 

After surgery turned out I had appendicitis and endometriosis. The sickness was being caused by good old-fashioned appendicitis and the reason they couldn’t find it was it was in the wrong place due to being fused to the rear of my womb, while trying to explode into it. They removed the appendix, a section of my womb and a lot of endometriosis. 

That surgery was the worst, it took the longest to recover from and it was the first horrible belly button I was given. I was referred back to my GP for further treatment. I was prescribed the pill and a year of one-to-one counseling. The pill helped me by reducing my symptoms and an ability to have some regularity in my life, I was advised if necessary, to run 2 packs together, it really helped.  

The counselling saved my life, no doubt about it. I was told at 17 that I would have a life long illness that has no cure. It’s a devastating diagnosis at any age but when you're not even old enough to buy a drink to cope then its particularly brutal. It was explained to me that due to the nature and severity of my endometriosis it would be extremely difficult for me to carry a fetus to term. This is different from getting pregnant, they didn’t think I would struggle as much with getting pregnant. I made the choice then to not try to get pregnant, I didn’t want that to be my story. I knew there were other options if I wanted to be a mum but if I didn’t I was also ok about that too. It has been extremely freeing to take that pressure out of my life. I have been upfront and honest with everyone about it. 

The year I spend with the councilor gave me time to process the life I thought I would have, how it and I would need to adjust, in a safe supported space. I was able to make decisions in my own time about the way my life and treatment would go. It was very helpful to look at my life in an objective way and with support, it made it easier to make informed unemotional decisions about my life and health. 

I was able to start a relationship and eventually attend college while working part-time. My life felt like mine again. I did attend some CBT while at college and here the issues that raised my stress and endo were first identified.  

At 21 I was struggling with the pain on a regular basis and it was interfering with my life. My GP referred me for more surgery and more counseling. This counseling was to deal with the stresses in my life to identify what could be affecting my endo symptoms. This Therapy made me look at my personal situations and relationships. This was hard but extremely beneficial to my life and my ability to manage my symptoms.  

My 30th birthday was spent getting more excision surgery and every person who checked my DOB was surprised why I took a surgery on my birthday. They were more shocked when I said it was the best gift, I could get this year or any other year. This surgery was big and long. I was in for 3 days. GP recommended being on the pill full time, no breaks. It was such a huge difference to get back to more than my normal after this surgery. I started a company, built it up, employed people and felt like I was finally achieving something good.  

At around 36 I started struggling with eating cheese, then all dairy. It’s been a slippery slope to 39, where I now struggle with eating all lactose (dairy sugar) all pectin (fruit sugar) and caffeine.  

I joined the support group to speak to other people who are struggling too. Reaching out has made such a difference in my life. Meeting friends who I can chat with out of the group, sharing my crazy symptoms and getting decent understanding and support.  

This year at 39 my latest surgery, more excision and the coil. The coil made it difficult to poop so it didn’t stay in for long. And I’m back on my pill. This is the 3rd type I’ve been on over 20 odd years and for me it’s been the most effective way to live my life. I choose early not to try to get pregnant and I have stuck with it. That relationship i started, is my now husband and he has been aware of my choice from the get go and it’s made it easier to be honest about my symptoms and when I’m not coping.  

Therapy taught me to be honest with myself about my life and the way I can live it. It’s made me be honest with everyone in my life about it to.  I can only make myself happy and that will make me healthier overall. 

Seeing how many people have to fight to get simple care for a chronic progressive condition is why I started Endo Bonds. Having life-long support mentally and physically, with surgery, has made it possible.