Amy's Endometriosis Story
By Amy Beesley
My journey starts with thinking all women have excruciating cycles and are so strong and powerful that they show up to school/work everyday and never talk or complain about it. It made me think I'm so weak and a hypochondriac for always having something wrong.
It wasn't until I came off of the pill that I'd been on since I was 18, that something changed. I was 31, in a long term relationship and thought it was time to give my body a break and maybe start planing for our future to start a family. Or at least to start getting my body ready.
It was worst time of my life. I stacked on the weight. Even though I was exercising and eating well. I couldn't handle social events as I was so tired all the time and could barely do my full time job. I would, and still to this day this is true, have to rest all weekend to be able to function and do my full time job. I would cancel on friends a lot. I put it down to the fact that I was just depressed. But how when I had just got engaged, we were moving into an amazing place together, I had the best job and to top it off the most amazing friends and family. How could I be so depressed and fatigued!?
The pain with my periods became even worse. It was the week before my period, during my period and then the week of ovulation. Definitely not feeling up for it if you know what I mean. Even the times we did get down to it I would hate it. It didn't hurt but was so uncomfortable and to top it off I would have some blood afterwards. Very sexy!! All the while still thinking all of this is totally normal.
It was a year of putting up with this only getting worse. I went to see a gp and told her about my bloating. How I would go up 2 sizes and not fit anything. How I would drink all the water and hardly eat because I was so uncomfortable and in so much pain. She told me I should only eat salads for a while and see how I feel. She ran some blood tests and it came back with borderline underactive thyroid. Nothing they can do for that apparently. I went back to the gp again not long after and this time I told her about the blood after sex. I had read somewhere that it's not normal. She got me to have an internal scan.
I didn't hear back from my doctors after the scan so I assumed it was all ok. And that it was just another painful period.
I was at work with my hellish period of all time. In so much pain on my left side I could barely stand up straight. I thought I was going to throw up or pass out or both. I ended up googling what side your appendix are on as surely this can't just be my period. Wrong side for appendix pain. The next day I went back to the gp and she looked at my latest test results and said "You have a very large cyst on your left ovary that's causing your ovary to swell. You'll have to see a specialist and have this cyst and ovary removed". I was in shock but also releived to know I'm not going mad.
I went to my specialist appointment with my mum and sister. They insisted on coming which I'm very grateful for. My doctor asked me lots of questions. It was strange to finally feel cared for and he knew all of the right questions to ask to get all of the information he needed to tell me that he believes I have a condition called endometriosis. He said he can't know until the surgery but I had to have the surgery regardless so we'll soon know what's causing all of my symptoms. I looked over at my mum and sister and they were both crying. I was a little bit shocked. Neither of them have any issues with their cycles and were crying because I've been going through all of this pain and they had no idea.
I was booked in for surgery that week. The surgery confirmed I had stage 2 endometriosis. He was able to keep some of my left ovary so that it would grow back. He removed endo from all over. He said that my fallopian tube attached to my better ovary was very damaged and this could cause fertility issues going forward. The recovery was much longer than I thought. I was very slow. It took a good 6 months to start to feel myself again.
I started back at the gym with personal training sessions and focused on a low carb diet. I didn't really change much else and thought I'm all good now. By month 9 all my symptoms were back. I was in worse pain than ever, my bloat was next level, fatigued to the max and now I had bladder issues in that I had urgency and needed to go all the time. I went back to my specialist and he got me to have a bladder test that confirmed my urgency. Far out that test is not pleasant.
A year later from my 1st surgery I was booked in for my 2nd surgery. It was purely exploratory as they can't do any tests to see if it's back. I was so scared I'd wake up and it be all in my head. He told me right before I went under that if I woke up and had only a scar on my belly button that there wasn't anything there. Otherwise I'll have 3 to 4 incisions. I remember waking up and yelling out how many incisions do I have. The nurses are all so lovely. She lifted my gown and told me I had 3. I wailed loudly and couldn't stop. I was so releived my endo was back and it wasn't all just in my head.
My results confirmed stage 3 this time as he had to remove endo from my bladder. I had decided I'd also try the mirena. This was placed in while I was in surgery. I recovered quicker than last time. I put that down to being a lot fitter than I was the first time. It was still a long process to feel myself again. The mirena seemed to work for a while. I hardly got a period at all.
However 8 months later all my symptoms were back again. I have so many photos to show my bloating. I looked 9 months pregnant. My specialist had moved overseas so I went to one of his recommendations at the same hospital.
It was a horrible experience. He handed me scripts to all the drugs. After I told him the mirena isn't working and I don't want to be on the pill anymore. I was balling and couldn't stop in there. I was so embarrassed too as I've only just met him. He gave me some tissues and said "I don't know why you are crying. What outcome did you want?" He also kept saying to me that endometriosis is incurable. And on and on about pain management with drugs. I don't know what outcome I wanted I was just so defeated. I walked out of there into the reception where all the pregnant women and partners were and broke down again. How could this be that this is my life now? That I have to have constant surgeries that don't really give me much relief. Now I have to find another doctor to trust.
I decided I'll try anything and my next step was down the natural route. I made an appointment with a naturopath who came highly recommend. She took a look at my blood test results and put a plan together for me. She told me my hormones were all over the place and when you have a lot of oestrogen in your system it helps your endo to grow. I had a bunch of supplements to take for inflammation, hormone balancing and fatigue. Plus a new way of eating. I also had to have my mirena out so that they can work with my real hormones. She recommended I see an acupuncturist with my naturopath work. I started doing acupuncture once a week with changing my diet completely which included cutting out sugar, coffee, dairy, alcohol and carbs/gluten. It was so hard but I knew I had to give it a shot. I also had such a good feeling about these 2 women in my life trying to truly help me.
2 months in I felt the best I've ever felt in my life. I continued doing this for 7 months. Then I fell pregnant. Surprise!! That was not on the cards. We had just got married and in the process of building our first home together. Our plan was to wait until we were in our new home. We were both so stoked regardless of our plan. I was super scared and didn't get excited or my hopes up. It wasn't until my 6 week scan that I heard our baby bean’s heartbeat for the first time that I got excited and started to feel real. It was really happening for us.
The week of my 10 week scan I knew something wasn't right. When we showed up for the appointment my husband asked if I was ok. I said I'm so nervous. My OB could tell I was nervous and got me on the table to do the ultrasound. She got my husband up close so he could see our baby bean. She went very quiet and I heard her go "where are you?" Then more quiet. Then the words you never ever want to hear "I'm so sorry! There's no heartbeat".
Another surgery. This time a little different to the endo surgeries. The pregnancy loss completely broke me. I'm still trying to work with all my emotions. After the first few cycles I actually didn't feel that bad. Clearly having a natural break to my period for a while really helped. I've also struggled to start "trying again". The pressure now knowing I can fall pregnant naturally is just too much. Its been 7 months now and I'm coming up to my due date and I'm not pregnant. To top it off all of my endo symptoms are back. I keep blaming myself that they are back as I knew I could control it with diet and everything else. I've been constantly beating myself up because I'm drinking coffee again, drinking alcohol and eating all of the carbs. I've also been the most stressed I've ever been now with a mortgage to pay and all the other bills that come with owning your own home. This means I cant afford to have as many acupuncture sessions or see my naturopath and pay for all of the supplements that help.
Last week I went and saw my OB who is also an endometriosis specialist (this is why I chose her). She did a scan to check everything and it all looks normal. However with my symptoms it means I need to have another surgery. The scary part is that without the surgery its stopping me from getting pregnant. I'm feeling very defeated and it sucks that i have to put this pressure on myself and my husband to get pregnant. I just never thought it would be like this. I cant help but to compare myself to all of my beautiful friends that have fallen pregnant so easily.
I'm now working out a way to pay for my 3rd endometriosis surgery. I'm very lucky that I invested in private health cover before any of this even came about but when you have an amazing doctor it means a huge out of pocket cost. All while working full time and keeping a smile on my face everyday.
This has actually been good for me to write all of this down to look at how far I've come. To know I'm not weak at all. To know I have so many wonderful people around me that make up my support network. I wanted to tell my story because it feels like the only thing I can do to help others. I want it to be out in the open and I want people to talk about it. Even men to talk about it. Its important for women to know that bad period pain is not normal at all. Its important to get the right help for yourself. I just wish there was more I could do to help myself and others.
Stay strong my endo sisters!
Amy xx
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