Two weeks ago, I was in surgery because of severe adenomyosis. During the surgery my uterus was removed - and additional endometriosis tissues at multiple locations. Since that remarkable day, I’m finally free of pain! The last few weeks/months before the surgery were living hell: I was constantly in so much pain. I felt vulnerable and was always exhausted and tired. In the end, I pulled through it. Not because I’m such a strong woman or anything, but because I have the most amazing people around me who supported me and lent me their strength when I needed it the most. I hope I thanked them enough and that they do know what their help means to me. Regardless, I want to share with the world how they helped me - perhaps there are some suggestions for others how to help people in need.
Let me start with a memory which I will cherish for many years: My grandaunt, who is over 95 years old, heard through the grapevine that my pain increased and that I started looking into surgical options. What did she do? She called me ask if she can help in any way and that - if she still could - she would take the next train to come to my place and taking care of me for once. The idea that this amazing woman wants to come to me and help me, still brings a smile to my face. You could say it is a candle that I can light anytime I need a bit more light during the darkness of pain.
My best friend aka my boyfriend was able to "really" support me and be by my side each day and at any time I needed him. And he did it. Over and over and over. He accompanied me to all my doctor appointments, all my not-so-fun ER visits and held my hand through all of it. He even called the doctors when I was to exhausted to talk to them myself - which is a bigger thing than you would think, because he really despises making phone calls. He also got the full brunt of my exhaustion and pain-altered moods. He handled it all with infinite patience, he held me when I cried because I was so hungry but my brain wouldn’t come up with anything I would like to eat, and my stomach found any suggestions horrible because of all the pain meds I had to take. Apropos food, he also cooked everything he could think of that I like. All my favorite food, even the food he doesn’t really like and I usually only get when visiting my parents. I never asked for it, but he did it anyway because he knew it would make it a little bit easier for me.
Home office and our employers provided us with additional support. For me, working from home made a huge difference: If the pain started to flare up (e.g. some horrible cramps), I could just lay down until it was over. At the beginning of the downward spiral of pain, I started to do a "lay down" for 30 minutes after lunch each day to help me deal with the pain. That my boyfriend could stay at home too? A much needed help, especially at the end, when moving around was too painful and he brought me everything to my makeshift sofa-bed-workplace.
But our employers were not only the best with the home office possibility. My boyfriend’s team had his back when he needed to take care of me. He could come with me to any doctor appointments, and all the ER visits without any difficulties. They have flexible working hours which is already helpful, but they even supported him when he had to reschedule or cancel meetings because of me. They all just wished for me to get better soon and helped me by helping my boyfriend to be there for me.
And on my side? I am lucky to have almost zero meetings and flexible working hours too. On top of that, my bosses and my team supported me however they could. When I could only work a few hours a day? They told me they are happy for any hour I can work – they told it in a way that I could and did believe it. I knew they had my back and supported me when I needed it the most. There is one sweet example I want to share: In the last few weeks before the surgery (and under heavy pain killers), I stared to notice that my brain was getting slower and it was harder to work on new stuff. I told my team and asked if we could assign only task to me where I already worked on the code basis (I have only been in the company for a couple of months at that point). Do you want to guess their reaction? I was immediately assigned an "easy" task and within three hours they found a bunch of similar task for me to work on – and continued doing so until the day of my surgery. The whole time they never questioned if I was really in pain or if I could work more. They were never annoyed with me because I started to be kind of unpredictable regarding how much I could work at any given day – on the contrary, I had the feeling they were happy for any hour I managed to work with them.
Long story short: Having employers and colleagues that had our backs was the best support for both of us. We did not have to stress about work, we could focus on getting me through the days.
Back to my social circle, also known as my friends. They were all supportive in their own ways. For example, I have a small group of friends who I meet regularly for brunch or dinner. When I started to get more issues with unpredictable pain, we started to always meet at my place. It made it easier for me to know, that if the worst thing happens, my bed was near. When the pain started to be a daily issue, they would still come over for a meal and were fine with me being a horrible host and sitting around and letting them and my boyfriend do everything. They never ever judged me. If I wanted to talk about it, they listened. If I didn’t then we had enough other topics to talk about. All of my friends let me decide what I wanted to share and when.
There is one friend that did go the extra mile. In the beginning of my search for answers, he asked if I would be comfortable if he asked questions and if I would keep him in the loop. It was not just some fancy words, but he honestly was as invested in the whole story as my boyfriend and I. So he knew about all the appointments, and he would check in with me whether everything went alright and if I have new information. When I had appointments I was afraid of, for example, I had to go through a psychological assessment before the surgery, he would offer that we could have a call and talk about it and try to prepare me as much as possible. Sounds strange? Was the best thing ever. Having someone support me that much with no strings attached and with so much honesty, it provided me with a totally different strength. Talking with him gave me much needed clarity and objectivity. It helped to see myself and the situation without the filter of "pain" and "endless struggle". He helped me seeing the progress I made in finding a solution – the metaphorical light at the end of the tunnel and not only the darkness consuming the path.
And at the beginning, when I was much better and the pain was more something annoying occurring at the worst moments, we also had a lot of cool calls where we worked together on some NLP tasks to learn more about our favorite topics. It was the best distraction ever and I loved this calls – until the moment when I couldn’t even do that much anymore.
There is one last group of people I want to mention: my family. I mentioned my grandaunt at the beginning and how she heard about it through the grapevine. This grapevine is also called my family. They are a bunch of noisy but loving people. They kept themselves updated, ensured everyone knows everything. So I only had to tell one person something and not to repeat myself – which I’m really thankful for, repeating how terrible I feel is not too great. And if I needed help? They helped, no questions asked. When I was annoyed that I had difficulties finding good and recent papers about adenomyosis and endometriosis? My mom worked her powers – and probably some connections she has – to get me some reading material.
One thing they all had in common is that they believed me when I said that I had an unnatural amount of pain and that it is getting worse. And when it did get horribly worse in only a few weeks? They still believed me and let me decide what I want to do – there was only one incident where my boyfriend decided enough is enough and dragged me to the ER.
On that note, I want to make one last comment: finding the right doctors is the worst. But if you found them, it is the best experience ever. It won’t make the journey "worth it", nothing makes a doctor saying to your face "you are a woman, deal with the pain" worth it. But when you found the right doctors, you will have medical advisors beside you who will believe you and help you find the best solution for your case and work together with you.
I found mine because I told my boss about my struggle. He mentioned that his wife was happy with the Kantonsspital Baden. I checked it out two months later (I should have made the call the next day, past me was stupid…). From the first call the interactions were so much different! I didn’t have to explain myself. I told them I was in horrible pain, they believed me – and yes, I cried on that first call because I finally found someone who believed me. And after the first appointment? We called them roughly once or twice a week because of some questions or issues with the pain meds. They were always friendly, always helpful and I still can’t believe how much they helped us. Because they believed me, we were able to fix me. Today marks 18 days in a row without pain – and we have much hope that it will continue like this! I want to finish my post on this highly positive note.
For all people out there in pain: I hope you have an amazing support team to help you bridge the time until you find the right doctors – and I hope you find them really fast!