Adeno-my-what? Making A Life Changing Health Decision at 23.
Hello!! I had no idea how long it would take me before I was back posting here..
Here is what you may have missed:
I had a 3rd heart surgery in May
I disclosed and have been processing trauma memories from childhood in therapy..and it is truly a full-time job + overtime. Hardest thing ever, but helpful.
I was a contributing author in a book!! Link is on my home page :)
I participated in a Suicide Prevention Month panel on Zoom with the Canadian Mental Health Association and members of Worth Living.
What the heck is bringing me to the keyboard today?
Something big is happening in my life and because it is something very unique for someone my age..I feel like I should write about this journey and what I will be going through.
This is the year of surgeries I guess.
I won’t get into the heart journey much in this post, but if you follow me on my Instagram I was pretty open in my captions about the journey. Before my heart surgery I was passively suicidal. I was not going to do anything, but I also gave up to where I started saying I did not want to go through the surgery anymore. I surrendered to my body and the fight. Since my surgery, which I’m glad I did surrender to- I have been doing well. It has taken some time. I struggled this summer. I don’t remember the last time I saw such a low number on a scale but for months I was having baby food, unable to digest anything without nausea and diarrhea (I don’t even care about TMI anymore lol). My collar bones popped out, my ribs showed, and losing weight was not admirable..I was self-conscious. The good news is that the more I started to work on in therapy, plus working with a naturopath, I’ve gained weight back. I want to be able to say the hurdles of the year are over, and that I can truly start to step in to my life at 23. I can’t yet, but I will soon.
My heart ablation helped so much but I want to truly feel out of the woods. This is my time to tackle all of my health stuff. I have had to be a hell of an advocate for myself.
Come December.. I’ll be tackling my Endometriosis again in a laparoscopic excision, but will also be tackling my Adenomyosis (will explain below).
At 23 years old I have made a huge decision for my body. I will be having a hysterectomy!!
*Brief moment of silence*
Many people do not understand exactly what Endometriosis is- but there is another name most people definitely do not know. Adenomyosis (what they call, endo’s cousin)
A brief explanation:
Endometriosis is when the tissue that lines the uterus grows outside the uterus. It can stick to other organs as well. (Mine was growing around my appendix, bladder, and was pulling on my colon.) This can be treated through surgery, however it isn’t a cure- I’ll always have endo. Multiple surgeries are often necessary and endometriosis can grow back. If you don’t work with an endometriosis specialist, there is a greater chance your endometriosis can be missed in surgery as it presents in different forms. It is a disease that needs so much more research, education, and awareness.
Adenomyosis shares similarities, however it is when the excess tissue grows INSIDE the uterus. A lot of my symptoms are suspected to be due to Adenomyosis, but it was crucial at the time I have excision surgery for diagnosing and removing my endo first. However the only way to diagnose and cure adenomyosis (yes you CAN cure it) is through a hysterectomy. It is very clear my issues right now are stemming from inside my uterus, not outside.
Continuing this post I will share more about coming to this decision, and how it impacts my desire to have children someday.
I do not want to share every symptom specifically because I do not want others to self-diagnose or get worried about their own reproductive health. Just listen to your body. I will say, that my symptoms now are not identical to my endometriosis pain, but they are still holding me back. I also politely ask that though I would appreciate hearing from someone who has been through it..I really am not appreciating unsolicited advice especially regarding this decision. Endo and Adeno are very misunderstood (even from many OBGYNs) and my decision to undergo a hysterectomy is something I’ll be open about but it is still very personal. Though people mean well.. everyone’s health situation is unique.
Here is what sucks about when a specialist suspects you have Adenomyosis (or endometriosis honestly):
There is little they can do without surgery. There is no way to get rid of the Adeno, or even visually see it..without a hysterectomy. Because doctors do not push this surgery on people with a uterus, it is a very personal decision. When they can’t push surgery, they push birth control and other hormone therapies. I’ve been on the pill which affected my weight and my mental health horribly. I got an IUD before my endometriosis surgery (as a last resort before surgery to see if it would help my pain). My pain did not get better, it only gave me more mental health issues and some hella painful cystic acne so I got it out early.
I was passing massive blood clots and sleeping 14-17 hours. I sent my doctor a beautiful photo of one of the clots and she replied asking me to come in. I found myself in the same position I was in a few years ago, sitting in my doctor’s office talking about options. She passively mentioned a hysterectomy being a last resort and I said, “I’ve seriously been thinking about that.” She wanted me to think about it some more, as it’s a huge decision to pursue a hysterectomy especially at my age, and that it is OK if I changed my mind. She asked me to talk about it with my psychiatrist. I did, and my mind was made up. My specialist understands, she is on board, she is just looking out for me and does not want me to regret anything later. I appreciate that she genuinely understands the emotional, personal part. She also specializes in Adenomyosis and knows I am left with hardly any options left. I can’t really wrap my head around it. This year..having a heart ablation and a hysterectomy.
This is a decision I never thought I’d be making at 23. I was told if I go through another surgery my specialist would be taking care of all of it- as treating only the endometriosis may not make a big difference at this point.
“But what about children??”
Kids aren’t a part of my plans at this time but I have had to think seriously about their role in my future. I’ve always wanted children and the experience of pregnancy and childbirth. Childbirth interests me so much..I find it fascinating. I thought it through. Natural, home birth, doula and midwife. I also know that given my health history a home birth would not be a smart bet. Birth would be really hard for me and be more trauma on my body that has already been through so much. My heart condition, my endometriosis, sexual trauma, my PTSD, being a likely candidate for postpartum depression. It’s a huge decision, and I’m talking about it a lot in therapy. I know I want my life back. I want this to be MY YEAR I tackle the health issues that have held me back. I don’t want to experience many more years of pain and the impact it has on the rest of my body. When asked about how I feel about not ever being pregnant, I say “My want for carrying a child is so much less than my want to truly get my life back and be pain-free.” Someday..I know there will be other options. I look at things differently being gay too. I never felt, and I never feel like I will have to be biologically related to my children. I am however, looking into freezing my eggs!
“Will you need hormone replacements?”
Nope! They will be removing my uterus and cervix, but keeping my ovaries. I’ll still ovulate. I’ll still have eggs. They don’t typically take the ovaries if they don’t need to..plus hormones are still essential (estrogen helps cholesterol and bone health). Still, hormones may fluctuate after surgery. This is something I have been worried about with my depression, because I was hospitalized for my mental health 1 month after my endometriosis surgery. I am going to prepare myself before surgery by talking about everything in therapy. Surgeries in general, trigger my trauma, so I have gotten better about making sure I have the right supports in place before taking on something big medically.
Though this is a CHOICE I’m making, and am confident about- there is still a lot of emotion around this. Around the fact that I have to make a choice like this to begin with. Is it weird that I almost picture my uterus to be crying and bandaged up inside me? I almost want to hug it..tell it it’s going to be OK, or that I am sorry for letting it go.
I have tears just writing that…
I think my posts in time will become Hysto Diaries as I go through this journey. I’m grateful I can connect with people in my support groups who are around my age, going through or have gone through a hysterectomy for Adenomyosis. I can’t explain how helpful it is reading posts of so many people saying how it has helped their quality of life and that they have NO regrets. It really helps when I get lost in my head.
23 will still be my year..recovery just may be longer.
Stay well, stay kind to yourselves, and kind to your bodies.
Appreciate the days you feel well, at home in your skin. I know I am looking forward to having that feeling last longer than it has!
xx
Haley