My adenomyosis journey

December 16th arrived so quickly. It felt like forever at first. The pain I felt beforehand was a confirmation that I wanted/needed the surgery. It affected me in weird ways. My arm hurt, my wrists were weak, I could not bend my right knee. I barely slept because my entire body hurt.

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Days before surgery.. I just could not get comfortable.

I was not nervous on surgery day, it was only anticipation to get it over with. My parents could not come into the surgical unit with me, due to covid. When my name was called I hugged them, my step-dad told me to have fun, and I followed a nurse to the back. The nurses knew I had anxiety, but when they asked me if I needed anything I said I was good. I really was OK not taking anything, and waiting until anesthesia. Gathering my history, a nurse said I have the health history of an older person. Yes, I am aware. Before surgery I was very dehydrated, and they drew my blood twice because some of my levels were a bit off and they wanted to make sure it was not a fluke. I was not too surprised. I had been so unwell.

The nurses and even the anesthesiologists were very kind and it was a small hospital so I did not feel overwhelmed. Waiting for the IV, I dug into the muscles in my thighs and hoped they would no longer hurt when I woke up.

Before I knew it my surgeon had arrived, they were getting me ready, and I was wheeled into the operating room. They warned me, “it’s very bright and very cold.” It was, but at that point I had some medicine to relax me. I think the last thing I remember was them telling me they were going to give me some oxygen. I think I recall a mask on my face and I think I was knocked out within seconds.

When it was over I woke up slowly, and it was hard to stay awake. I noticed my legs no longer hurt, and I rated my pain a 3. It did not take much longer before I realized I lied, it was definitely not a 3. I asked for more pain medication and it helped tremendously. I had 3 glued incisions on my abdomen, in addition to 1 inside my belly button. I also had stitches inside to replace my cervix- which I of course won’t be able to see. In the recovery room I was doing well, so I only had to stay for a few more hours. I had a catheter in and after they took it out they wanted to make sure I could pee on my own. A nurse helped me hobble to the bathroom and TMI, I just sat there for a while with zero idea how to go. My stomach was swollen. Because they removed my cervix, and I had zero connection to that part of my body or how to relax those muscles. All I could see in the toilet was blood, and a mini trail of blood I had left walking to the toilet. I stood at the sink crying, knowing I would not be able to see my parents or get discharged until I was able to pee. I also was admittedly scared that even peeing hurt. The nurse waiting outside the door knocked to check on me, and opened the door to me standing at the sink in tears. “I couldn’t go, I said.” She looked over at the blood in the toilet. “I’m so sorry” I said. That is SO me! I WOULD apologize. She assured me it was okay and helped me walk back to my bed. I continued to cry while lying there, and I could hear everything in the hallway, including the nurse whisper to someone else how I cried and apologized for not peeing. Another nurse came in to give me more fluids, and she left me a box of tissues. She commented on how sweet my doctor was and how she wanted her 17 year old to have her. I also thanked her for being kind as well. Not all nurses are!

Once my pain was managed and I was able to use the bathroom on my own- yay- I was discharged, and brought out front to my parents in a wheelchair. I thought I would sleep in the car, but I didn’t. I was too impressed with how different I felt. On the way home there was a bright sunset, and my mom said “Look Haley! See! It’s a sign!” I was just happy to have it over with.

The first 2 days were hard, and it was painful to sit up or walk without being hunched over. I was doing ok, but my mom did have a small meltdown she told me. She just felt overwhelmed for me, and badly with how many surgeries I have needed to have, and everything I went through this year. I reminded her this was a good thing. She did say how amazed she was that after my surgery she could see the color come back to my face. I had looked so pale and skinny, and my chin was covered in cystic acne. After my surgery, my skin just started clearing up, I was no longer pale, no longer limping, and life was brought back to my eyes.

The worst incident I had with recovery so far was a cough attack I had after sipping water. My throat was still scratchy from the breathing tube and usually when I cough, it is over and over again until I can stop. I clutched a pillow on my abdomen and applied pressure as I coughed into my arm, eyes watering, yelling “OW” and “FUCK!” I could see my mom wincing as she watched me in pain. Tea helped me a lot more. I learned the hard way that laughing, coughing, sneezing, were all very painful.

When day 3 came, I challenged myself to stop taking my pain medication and only stick to ibuprofen every 6 hours as needed. Day 3 was when I felt my best. I sat upright at our kitchen table and worked on a coloring book. I had purposely bought ones with positive quotes because I had no idea how I was going to be feeling mentally.

I always learn a lesson after a surgery. That lesson is that even when you feel well, you still have to baby yourself because your body is healing from a lot of trauma inside. I find that I try to do a little too much. I stand for full showers, make my own meals, hunch over to grab things. It felt OK at first because I still had medicine in my system. As the days go on I am noticing how very sore and tired my body is. Doing an activity for 15-20 minutes long means I need a 2 hour nap after.

I am not supposed to drive for 2 weeks, but with Christmas Day approaching I am a bit anxious about my plans. Christmas Eve I will have a ride to my great-grandparents, though I am worried about my energy level, and being lazy on the couch elevating my legs. Christmas Day I was invited to my girlfriend Alyson’s family’s house to do a gift swap, but it is an hour away. I am worried about the car ride, and also my energy level. I have FOMO, fear of missing out. I want to be able to do it all but I am realizing that if I want to recover sooner, I need to take the first several weeks easy. My incisions may look small, but I still had a major surgery. I’m still not quite sure what I will do.

Aside from physically, I can tell that this surgery was a new beginning for me. My body and soul are healing in numerous ways, and emotionally I have a lot of healing to catch up on. It is all positive, though it won’t be easy.

I still intend to have a happy holiday. I am excited for Alyson to come home from NYC as I missed her so much. I just need to put less pressure on myself to keep up, and know that in time I will be able to do so many things I was never able to do before. Thanks to this surgery!

December 30th is my post-operative appointment and I am eager to hear my biopsy results. So far all I know is that during my hysterectomy my surgeon also found and removed a bit more endometriosis that had grown back since my last excision in 2019. I feel so refreshed and different now that my uterus is out so I am beyond curious what they will find in the biopsy! I have zero regrets, and I am really proud of myself for advocating for myself again. I know myself, and my body, much better than I think I do.

Thank you all for the patience and the well wishes!! We will see where recovery goes from here.

I had 3 cats at my mom + step-dad John’s house to spoil me

The countdown begins!

Not a Christmas countdown, but my hysterectomy countdown.

Really quick I want to clarify a commonly asked question and one I did not know at first! I am having a total hysterectomy which means removing the uterus and cervix. This does not include the ovaries. A partial hysterectomy is removing just the uterus, leaving the cervix. A radical hysterectomy is when the uterus, cervix, ovaries, and fallopian tubes are removed. This will mean hormone therapy, and will trigger menopause symptoms (which I won’t be going through). However, even with my ovaries I will still ovulate and therefore still have PMS/PMDD.. yay.

Back to it..

I have gone back and forth with my emotions around this surgery. I will not regret it, but it does not make it easier. I get so excited about my surgery date, but I have had moments of “weakness” where I would cry over the thought of never being pregnant. It does feel like a loss, because it is. However, what I will gain will be worth so much more. I will be healthier, happier, and my body will not limit me as it has.

Earlier this month, I had the worst flare-up of my life. Yes it began with a period, but it was so much more than that. A massive ache in my pelvis and groin that traveled to my ankles, clots, nausea. I assumed it would only last 2 days or so. I had a virtual therapy appointment and I could not talk much because I was so nauseous. I spent the session in my bed. The next day I saw my mom who told me I looked really pale. Still, I went to NYC for the weekend to visit my girlfriend Aly. Though she told me I did not have to come if I was not well, I wanted to because we can’t always see each other at a distance. I regretted going, but not because of her. My pain did not get better, it only seemed to get worse. I hardly slept each night. I had a headache, neck pain, back pain, stomach pain, leg pain- I think just about every part of me hurt. I also was hot when Aly was cold. I felt feverish. I had a bag of ice behind my head, a heating pad on my stomach, I could barely eat, and I was so sick. I think I cried every day. Correction, I know I cried every day. Aly has certainly seen me at my worst, but I am so grateful for her staying by my side. I had taken so much tylenol knowing it never helps, but not knowing what else to do. High strength CBD lotion hardly helped as well. I was crying awake at 2am come that Monday morning, and by 4am I was sitting on her bathroom floor still in tears, a warm forehead, and in the worst pain I have ever felt.

4am.. in New York City.. we were walking to the hospital. I have been to the ER before during really bad flares, and usually there is nothing they can do. When pain is invisible it is even harder to be taken seriously. I just felt safer being checked out since I felt so nauseous and feverish. In my support group, whenever somebody debates going to the ER, someone always reminds us that it does not hurt to go in case there is a rare chance something IS really wrong or a cyst burst, etc. It was a horrible experience. The nurses confessed to being short-staffed, but nobody had checked on me for several hours. At one point I was moved into the hallway and I was not sure if I was crying from the pain, my anxiety, or both. I was hysterical in fetal position, and panicking that I could hardly breathe with my mask on. I was relieved they gave me fluids, and pain medicine through the IV. I think the only reason they took me seriously was because I told them I was having an upcoming hysterectomy for endometriosis and adenomyosis. In the past, they would not give me anything stronger than tylenol. I have had scans come back normal and once was asked by an ER nurse in Boston, “Are you sure you don’t just have to poop?” It feels dehumanizing and nobody understands the pain unless they experience it for themselves. I think I would have preferred a broken bone.

We were there for 7 hours or so, and I felt horrible I kept Aly there with me. I called my OBGYN’s office but they could not give me medical advice out of state. I was told to just trust the doctors and advocate for myself. By the time we left, I had asked to be discharged. They asked, “are you sure?” They offered more pain medication but at that point we had been there all day and tired of waiting for a doctor. I was so sleep deprived I just wanted to go home. I sobbed because I just wanted my own bed and to be close to my doctors, but I was afraid to get on a train with how I was feeling. My parents were traveling, so I called my grandmother who was ready to meet me at the train station in Connecticut . She planned to come with my grandfather so he could drive my car back for me from the garage. I felt horrible, but instead of napping after the day at the ER we hurried ourselves to Grand Central station. On the train I held it together for the 2 hour ride. I closed my eyes and listened to Taylor Swift. I think it helped my anxiety, because I know all of the words to her songs. It was comforting, and took my mind away from my worries because I could focus on the lyrics. I reclined in my grandma’s car, with my grandpa following in my car. I wrapped myself in a blanket. I was so thankful to be back in my own bed that night, but that week I felt like I was still recovering from the flare. I believe I told my therapist that I felt I was recovering from a car accident.

The bright side, if there was one, was that I no longer had any negative feelings about the hysterectomy. I only had fear that I would go through that amount of pain again. My doctor said that weirdly that happens where her patients get their worst flare-up right before their surgery. I remember standing in the shower with my hand over where my uterus was pulsing at me, and I was talking to it. More like pleading. “I know. I know you’re mad. Please, please hang in there. We are almost there. I know you hurt, I know. But please hang in there.” I just cried and let the hot water overwhelm me.

Here are some items I have prepared for post-surgery so far:

• an abdominal binder

• compression socks

• a coloring book (with positive quotes because I’m prepared for a mood drop)

• a lap desk

• a Verilux “happy light” (for seasonal depression)

• the medicines I’ll need

• HBO Max- I got a subscription which will keep me occupied when fatigued

I had my pre-op appointment and I was relieved to hear that this surgery has fewer risks than my endometriosis excision. It makes sense, because with the excision they are going around or tackling other major organs. My silly mother asked my surgeon if I will be OK alone that first night home, and assured her she lived only 10-15 minutes from me. I had to remind her that a) I have a roommate, and b) I recovered without her after my heart ablation so I should be okay after a hysterectomy haha. I can feel my mother’s anxiety. I told her that I think I’m handling this better than she is and she told me that she would prefer it that way. Still, it’s hard because I do not want anyone to feel sorry for me. I still see kiddos in my future!

The week of my surgery (Dec 16) I also have a tele-health consult with a fertility doctor to discuss egg freezing. All of this is very soon to discuss in my relationship with my girlfriend, but it’s prompted a lot of good, genuine conversations between us. She has been a great support and listening ear. I’m so very grateful.

My biggest fear is that after my endometriosis surgery in 2019, I went into a deep depression around 4 or 5 weeks post-op. My thyroid levels dropped (I have hashimoto’s disease), and I was also hospitalized for my mental health come 6 weeks post-op. At least this time I can prepare myself for any mood shifts. Even though my hormones won’t be affected much, they still can be. I have clinical depression, so I am at greater risk. What I can remind myself is that this time I am in therapy twice a week. My psychiatrist is always there when I need her, and if I need medication adjustments she will be right on it. I also live with my best friend, and I know her company will be much appreciated. If the tears/emotions do overwhelm me, I am going to remind myself it is normal, I am safe, my body is healing, and it will pass.

23 more days..

I can do this!

I can’t really remember when I last felt happy without also feeling tired. Perhaps there are times I confuse fatigue with depression. This year has left me weak, but building rather than breaking. I’m building strength, I’m building myself up again. The three things that impact me the most right now are: eating, sleeping, muscle pain. I have been working on eating more throughout the day, but also eating more greens and proteins and things to give me energy. I’m not always good at this. I really have been slacking on it.

I am not sure if my sleep problem is more because I do not get enough sleep or if my quality of sleep is the problem. I know my quality of sleep is messy. It takes me a while to fall asleep, and sometimes I wake up with nightmares. I talk in my sleep, cry out in my sleep, sometimes wake up in a sweat. I have tried magnesium, melatonin, a few different sleep medications. When I am not sleeping well at night, I sleep very late during the day. This makes the cycle continue..leaving me in bed most of the time, yet exhausted.

I am also not sure how my muscle pain began, but I am trying to help it. In the spring I developed a ganglion cyst on my right hand. Wearing a brace to sleep and for driving, typing, has helped the swelling to go down. X-rays have been normal, a chiropractor told me it was likely emotional pain. I have also recognized that stress and anxiety make my hands tense up, and in my sleep I clench my fists. This makes it hard to turn doorknobs, open jars, do a lot of things. Improving wrist weakness is not easy, and I am not working on exercises as much as I should be.

With these things weighing on me, I go through periods of sadness because I am so tired of being so tired. I feel guilty I am not productive, or that I haven’t gone back to work (I do have a job interview soon). I am aware I need more creative outlets or things to bring light and happiness into my days. Writing is great, but my writing often reflects how I am feeling. It is harder to write about cheerful things when I truly want to just chill and reflect. I also realized that aside from an activity, I need to smile more and have more positive thoughts. I can be genuine, but also try harder to keep my mindset lighter. If I have better, happier thoughts maybe my energy level will be better too.

I listen to a lot of slow songs, ballads, and lately I have been playing more upbeat music. It is weird listening to faster music when I feel tired, but it has been a good change and it has made car rides more enjoyable. I have started drinking coffee again to help me train to wake up earlier. It is going to be a hard change, but a change I need in order to truly feel like I am living my life and making my days purposeful.

I used to love photography, but I need a new battery for my Canon and haven’t gotten around to getting one. I used to love scrapbooking, making jewelry. There are a lot of things I have neglected. I could create a mood board..

Really I am not sure what to do with my time to bring some enjoyment. Instead, I plan to make a list of all of the things I want to do or “would” want to do if I wasn’t tired or in pain. I know when that time comes I will want to tackle it all!

Chronic illness is about patience. Patience, and hope.

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

I was never able to identify my triggers, I just knew that I had them. I could not name what would trigger me, and because of this it was hard to avoid or prepare myself for triggers. When I would become triggered, I would be asked what happened to set it off. “It” being a panic attack or dissociative episode. I would say, “I don’t know.” I would be fully aware of the shift in my mood, and could not give a reason for why it happened. When the words “I don’t know” are spoken, I become raveled in negative self-talk. I blame myself for how I am feeling, when I am unable to stop it.

I realized over time that in order to identify my triggers I had to listen to my body more.

When would my face feel warm? When did I start playing with my hands? When did the nausea start? The choking feeling in my throat..

Even if something was not obvious or did not make much sense I would start to notice my responses in my interactions with others. “I’m not sure why, but when when you said ___ I started to feel dizzy.” These are things that I shove aside and try to fight, when in reality my body is giving me messages that it is starting to become overwhelmed.

It helpful to identify triggers when you notice them. This is not always possible, but sometimes I find acknowledging them makes them go away easier. When I fight against them, I become more triggered, and my body goes into greater stress.

I have found it “cool” (when I am not actually feeling it.) My body gives me signals, and it speaks to me every day. I just ignore it. When I understand it, I sometimes give self-talk and tell myself “Thank you. I’m going to take a step back now.”

Even if I am watching a show and starting to feel overwhelmed by what I’m watching- I get very emotionally invested and sometimes feel depressed after watching too many dramas. I have learned to watch things that make me feel good, laugh, or that teach me something. I have been rewatching a lot of comfort shows and films and it has been helpful!

Sometimes writing helps, but sometimes writing triggers old stuff to come to surface. I have to be very careful of the content I consume, the places I go, the people I surround myself with. My energy is important and I want to protect it. When you have trauma, it is easy to picture your body boxed in or with a shield. The shield is never really there..

We do what we do to keep ourselves feeling safe. Even when we don’t understand our responses, are frustrated, embarrassed-

it’s OK!

& it’s OK to need reminders of that. I know I do.