Simply An Open Letter

I like to entitle my new series of blogs “Open Letters” because I want to be as honest to the world as possible. Recently, more people have viewed my blog. As I have said before, the numbers of views do not matter to me. It is those of you who continue to read my blog that inspire me to continue blogging. Without your support and your inspiration, I would not have the courage to share my journey. However, a part of me will always be saddened by the number of people who also suffer alongside me. I wish that our shared courage, love, and support for one another would be enough to end all of our sufferings. Nonetheless, it is that #endowarrior support that will continue to push us to live our lives to the best of our abilities.

endo

Inspirational Quote

Honestly, this week has been a real mental and physical battle for me. I have struggled to socialize, to leave my house, to complete my work, and to ignore the pain. There were several days where I did celebrate The Little Things In Life, but overall it was a rough week. As I wrote in Assumptions and Misconceptions, it is not that I have been depressed, it is simply that I did not have the energy to do any of the above. This disease takes a toll on my body and my mentality. It makes me curl up with a heating pad on its highest setting and stay in bed all day.

Every time I have adeno and endo pain, I return to the internet for solutions. There’s always the hope that someone has discovered something new in the past few days. Even though this is an unrealistic idea, I can’t help but scroll the internet for answers. I continuously look for new trails, doctors, clinics, and pain management suggestions. As Myshellie suggested, I have also tried joining facebook groups in hopes of finding new insights.

In the past several months, I have joined Adenomyosis Fighters Support Group and Nancy’s Nook. Both of these groups provided me with new information and research, but still, I am left with the same options. One positive thing about these groups is that I can read about the thousands of women who suffer as I do. And yet, in the end,  a hysterectomy, an IUD, or birth control seem to be the only existing solutions. One would think that with thousands of women suffering, someone would discover reasonable solutions.

 

I have rewritten this blog post about ten times this week. This is because I have so many ideas, but no way to simplify them. I would like to write about the current solutions out there, about the media, about my personal journey, or about my findings. Would any of these topics interest you? Is there something else you would like to read about? Let me know your thoughts!

7 thoughts on “Simply An Open Letter

  1. I have taken an interest in the theory about endo and its spread being connected to the lymphatic system. I have a student whose field is the lymphatic system and she often does surgery to treat lymphedema. She told me how amazing little they understand such an important part of our body. They still can’t even map a lymphatic system in a human body because no dye is small enough to go through lymphatic veins.

    But they have noticed that where the scar tissue of endo appear correspond to where lymph nodes are. There is some research discussing how it endo may spread through the lymphatic system the same as cancer. The tissue of the uterus somehow gets sucked up and then shipped around the body.

    It also makes me wonder if this is connected to what causes adeno. I too hope they one day find an answer. It might be too late for my uterus, but maybe future women won’t have to suffer.

    Liked by 2 people

  2. Hi lovely, I absolutely empathise with your frustration. Thankyou for having the courage to share your journey – I truly think women sharing their experiences is the first key step to spreading awareness, increasing knowledge and eventually having much better treatment options, if not a cure. Have you read ‘Beating Endo’ by Orbuch and Stein? Implementing their recommendations (particularly food and physio) was a game-changer for me. Stay strong and keep shining.

    Liked by 2 people

  3. Yeah I do the same, I am finally going to a specialist to see if they can help me control mind as I know there no cure and I have already been told I will never conceive which really does take a lot as this makes me feel useless and I personally don’t feel like a woman because I can’t do the one thing my body is designed for and its worse because I’ve always wanted to be a mum so its hard to accept that I will never be able to do that, but saying that I still don’t want a full hysterectomy as it doesn’t cure it and its a big procedure and to be completely honest I’m scared, of not only that but what will happen in the future. All I can do is go for support and try everything possible to even help reduce and control the pain, I know I will have flare ups and I know I will have more surgeries there nothing I can do but accept this and keep fighting x

    Liked by 3 people

    • Hey bekkibee, thank you for taking the time to read my blog! It’s interesting that you mention infertility and hysterectomy because that is what I am currently writing about for my next blog. The world thinks that we can simply talk to our doctors to solve our issues and it’s so aggravating that that isn’t even close to the truth. Stay strong too, we can work together to keep fighting these illness ❤️

      Liked by 1 person

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