Hello everyone! I am from Norway, and I am so glad that I found this place to read and Connect with all of you who share this condition of endometriosis. In my country there is not so much talk about this yet, we are much fewer people as well, so I find a lot of support reading the stories and experiences of everyone here as we don’t have large forums on where to connect. This condition is something which really tilts my mind, I was diagnosed three years ago with a chocolate cyst on my left ovary, and endometriosis tissue on the Right side of my womb. This is at least what my gynaecologist has been able to diagnose from regular ultrasound. I suspect it has traveled to other places in my abdomen, on my bladder and perhaps the bowls. I have inserted a spiral kyleena, since 2,5 years, as basically the only treatment available. The doctor told me that this would stop the spreading or at least hinder it, which I have learned now through research is not necessarily true. I feel like they don’t know what to do with this dis-ease, and I feel brushed off. I am unsure of what this hormone spiral is really doing to my physical and mental health, and I am considering removing it to be able to also connect again with my menstrual cycle, which has disappeared completely. Though I am afraid that without the spiral the tissue will spread more with the return of the bleeding. And also fear of the return of the excruciating pain. There is so much uncertainty, not knowing what is really going on inside my body. I will have an mri scheduled in august, and I hope it will be possible to gain further insight into the advancement of the condition. Now I rarely have pain, but I notice that I have a lot of mental and emotional disturbances also originating from my womb. A lot of negative emotions, fear and feelings of victim hood, and I don’t know if it’s the endometriosis and the unbalance itself which causes this, or the hormones released there. Or possibly both. There are so many emotions present in my body that hinder me from stepping up and truly dealing with this issue, also from feelings of bewilderment and not knowing where to even begin. These emotions are not new, but they have really reached their surface now with being sick, especially being functionally sick, as this gray area causes a lot of stress and panick, not being clear on what I need to support myself. Diet, rest etc.
So my questions if anyone has some insight to share
What is your experience of being on hormones versus not, when it comes to the spreading of the tissue? Has anyone removed their spiral, or gone of the hormone treatment, if so how was that transition for you? Has the tissue spread more? Has the hormone treatment caused significant mental or emotional changes?
How has having endometriosis affected your mental and especially emotional state? (Without hormone treatment).
It might be possible with surgery at some point, even though the condition has to be quite severe for them to operate in Norway. I have a worry that operating is a temporary solution, as I read the experiences of many women out there having gone through several surgeries only to have the tissue return. Has anyone successfully removed endometriosis through surgery without it’s return? How about when having a cyst within the ovary, does the ovary itself need to be removed?
I feel very much that I’m at the start of learning about this process and I appreciate all help and information
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