I have been wanting to write a Blog for quite a while for a better understanding on Endometriosis, a more positive one. Browsing through the Internet will lead you to the most dramatic stories of women, which have had a very difficult time of dealing with Endo; as in horrible and unnecessary treatments they went through to horrific stories of not being able to conceive. THIS STORY IS NOT ONE OF THEM. It will also lead you to medical websites, which do not state the proper statistics as to what the chances are of all those negative things this disease is associated with. Having endometriosis is dramatic enough, and I think women should open up more about how they positively cope with it. Because there is a way (trust me) of getting through it and feeling healthy again. This blog will keep you up-to-date as to what coping mechanisms I have found to help me out a lot. But first let me give you an introduction to my diagnosis.
"My Story"
Coping with Endometriosis is challenging as most Doctors will tell you, it has been challenging for me as well.
The onset: I’ve always had very heavy and painful periods, which doctors would tell me was normal all along. It wasn’t until I started my MSc degree alongside another Practical study, that the pain became unbearable. All the stress lead up to cramps which were so painful, that I couldn’t stand or walk anymore every time I had my period. I started loosing a lot of weight as well, causing concern in my MD. I was send to the hospital immediately where they highly suspected endometriosis and started performing tests on me.
The emerging disease & diagnosis: The first thing the hospital told me in february 2010, is that I might not ever be able to have children. Then, on my check-up they told me that the endometriosis looked malicious, and I might have cancer. After numerous tests, I learned it miraculously wasn't, but I did have deep (stage IV) endometriosis on my bowel, a serious disease. The disease would cause horrible pains, which would become worse under stress, so the doctors advised me to put a pause on my studies. They told me I needed surgery asap. I had to wait for my surgery for some specialists from abroad though, as in The Netherlands they did not have the expertise to perform extensive surgery on deep endometriosis. Meanwhile my specialist here was preparing me that I might have to get a stoma needing bowel resection, after postponing one surgery date after the other. All this stressful news was causing me more and more pain. Somehow my gut instinct made me research my surgery better and I learned more.
As was planned at that moment, I would be getting an unnecessary bowel resection, causing complications for my health later on. There were only a few surgeons in the world which are actually capable of doing this procedure without an unnecessary bowel resection. So I decided on switching hospitals, much more comfortable in the hands of the leading (deep) endometriosis surgeons in the world. I had to go through two final (and horrible) tests before surgery. About two days before I would fly to Rome for my surgery I learned that the MRI by my former hospital in Holland was wrongly interpreted. I did not have deep endometriosis on my bowel system, I had Adenomyosis, also a serious disease and a form of deep endometriosis (next to stage I. Endo). However, it could only treated by hysterectomy. The final test results confirmed this finding one day later. As a 27 year old, hoping to have children one day this, of course, was no option, so I had to cancel everything at the last moment. I was secretly very relieved, as I would not have to go through 5 to 8 hour surgery with a high risk of getting complications. I was also relieved to hear that Adenomyosis is not at such a big risk of becoming infertile as in the form of endometriosis first diagnosed with. Because hysterectomy is no choice, I would remain with this disease. I am very confident that I will cope with it though, alternatively wise. I WILL HEAL.
The journey of healing: At the moment I heard the news I knew I had to get away from it all to let everything sink in, and headed for France with my boyfriend for a 12 day detox, to find my inner Zen again. I knew I had to make some major changes and now I am very proud to say that from all the chemicals the doctors gave me (5 different pills, next to 6 painkillers a day) I am now off of the meds, and I feel better than I have felt in years. I changed my diet to an all-organic one, which is not only delicious, but also much better for my body (can you believe all the chemicals we are pumping in our bodies with modified foods?!). Knowing that stress causes pain for me, I decided to block the negative energy out of my life, and only allow the positive in. I also started again with a daily yoga and a cardio routine. I know that if I will listen to my body better, and just enjoy life at a slower pace, healing is only steps away. I hope that through my journey of healing with Endo, I can make a difference for someone else as well. If women would only open up more, we can all make a change for each other. Not all stories are horrific ;)
Keep up-to-date with my posts to see how I’m trying different methods on coping with Endometriosis & Adenomyosis…
Love, C <3
