December ‘23
It is December of 2023, and I am sitting in one of my good friend’s patient rooms in her OBGYN office. I am getting desperate to relieve my constant pain, as it has only gotten worse after my diagnostic laparoscopy and trials of medication that put me in a “fake menopausal” state to lower my estrogen & progesterone levels, in order to stop feeding my endometriosis. We discuss some other options I can try instead, and I elect to having an IUD placed. Keep in mind that I work in the women’s health world, and I am very aware that getting an IUD is painful, but I underestimated just how painful it would be. My friend says, “this is either going to be pretty tolerable for you since you are always in pain, or it is going to be really rough because everything is always inflamed for you down there.” She offers me to come back another time so I can take medication beforehand, but I think about how I would have to take off from work again for the appointment and choose to just go for it right now. I’m already here…I have a pretty high pain tolerance….I am pretty tough….I have lots of tattoos….I’ve gone through some military training…how bad can it really be? In the office I currently work in, we often give our patients Ativan beforehand, a Toradol shot right before, and they also have the option to use nitrous gas before, during, and after the placement. It didn’t take long for me to realize that I should’ve taken my friend up on her offer to come back another time. Soon enough, I was groaning on the chair with my legs in the stirrups making noises I have never made before during a doctor appointment. I can hear my friend say, “Sorry! Sorry! Almost done!” It wasn’t her fault it hurt so bad, and she was wonderful as always, it honestly only took a couple of minutes for everything to be done, but before I knew it, I was profusely sweating on the exam chair. I was sweating so much that the paper they put down on the exam chair for each patient to sit on during the appointment was completely soaked and sticking to me. I sit up afterwards and my friend says, “Sarah, you look really pale, you should lay back down for a while, and we will come check on you in a few minutes.” After about 30 minutes, I was okay and ready to go back to work, even though I was cramping pretty severely, but I had never been so close to passing out from pain before.
After talking to some friends, they also told me their stories of having IUDs placed and how painful it was for them too, some of them even passing out. I watched videos on Instagram of women videoing their facial reactions and screaming and/or crying while having an IUD placed that were posted for awareness of how painful IUD placement can be and advocating for pain management options. At my workplace, some women even have their IUDs placed under anesthesia in the operating room because they either have a history of trauma or they cannot tolerate the pain of the placement. It got me to thinking, what about the women in the world who are not offered any pain medication options for their IUD placements? My decision to get the IUD without any medication was 100% my decision, but what about the women who want an IUD but don’t get that choice from their providers and have no idea that it should be available to them? What if they have no idea just how painful it is going to be? IUDs can be wonderful for women’s health. They regulate menstrual cycles and bleeding, and they are also a great form of birth control. You don’t have to remember to take a pill every day, so an IUD is an attractive form of birth control to a lot of women, so why don’t we make it more tolerable, especially for women who have never birthed vaginally? When an IUD is placed into the uterus, the provider must get through the cervix. The canal of the cervix is typically closed, but for women who have birthed vaginally before, it can sometimes be a little softer and more opened. Either way, manipulation of the cervix is quite painful no matter what because that area is full of nerves, but when a provider has to push hard to get through your cervix or mechanically dilate it to get through, there is no way of getting around the pain of that….it’s going to hurt…sometimes excruciatingly.
February ‘24
About 3 months have passed since I had my IUD placed. I no longer have periods, and the fact that I don’t bleed anymore is nice because period pain with endo is just awful. Unfortunately, the constant pain is getting worse and more intolerable. I have a constant dull ache deep in my pelvis area, and I mean DEEP, and it never fully goes away. It’s not like period cramps that feel more surface level. I get random sharp pains in my abdomen and pelvis that sometimes radiate or shoot down my legs, sometimes all the way to my toes. My bladder symptoms are getting worse. When my bladder is full, I have pelvic cramping, and when I empty it, I often feel like I’m not able to empty it fully or feel like I have to pee all the time. I have to get up every night to pee, sometimes 2-3 times a night. The cramping is worse when I have to have a bowel movement, and I sometimes have severe rectal pain as I am going (sorry if this is TMI for some of you, but as a nurse, I really could care less). Sex is pretty much intolerable, and pelvic floor physical therapy is not helping. Each visit, my pelvic floor therapist tells me how tight everything is in my pelvis when she is examining me and pressing on my vaginal muscles internally. Everything is tight because of the constant pain and not being able to relax. The whole-body fatigue though, is almost the worse part. I never feel like doing anything, and when I do, it takes everything in me sometimes. I enjoy going to the gym and being active, and I hardly ever do any of that anymore because I am always so tired or hurting. I am becoming very depressed, wondering if I will ever feel any better. It seems like there is no light at the end of the tunnel. My anxiety is getting worse and worse with thoughts constantly running through my mind….what if I get deployed with my reserves unit & I feel like this? What kind of a life is this that I am living? I feel more and more isolated because as much as people try to understand what I am going through, they simply can’t because they don’t know what I am feeling. They see the smile on my face on the outside, but on the inside, I am in such constant physical pain but don’t show it outwardly. I follow an endometriosis specialist in New York on Instagram, searching for help and guidance, and then before I know it, I am scheduled for surgery with him in March.
March ’24
I am on a plane traveling from Alaska to New York City to have surgery with an endometriosis specialist. My mom is meeting me there from Florida and will also fly back to Alaska with me to help me with traveling/recovery after surgery. Knowing she is going to be there throughout this is extremely comforting for me. We are sitting in Dr. Vidali’s office for my pre-op appointment to discuss everything, and I feel like I am meeting an Instagram celebrity of the endometriosis world. He says, “I would like to examine you and do an ultrasound in the next room,” and I agree. During the ultrasound, he says I also have something called adenomyosis, which is news to me. The transvaginal ultrasound is almost intolerable the pain has gotten so bad in my pelvis. For those that don’t know, adenomyosis is when the tissue that lines the uterus grows into the muscular walls of the uterus, whereas endometriosis is a systemic, inflammatory disease caused by the presence of endometrial-like tissue found in places outside the uterus. The most common symptoms with adenomyosis are painful periods, painful sex, chronic pelvic pain, abnormal bleeding/prolonged periods, infertility, and an enlarged uterus. The most common symptoms with endo are painful periods, painful sex, chronic pelvic pain, painful bowel movements and urination, infertility, fatigue, nausea, and diarrhea. Once back in his office, he asks me, “if there is one thing that is improved after surgery, what do you hope it is?” I say, “the constant deep pain I have in my pelvis and the full body fatigue.” It’s hard to choose just one. He tells me that he believes I will feel better after surgery, and my mom and I leave the office feeling hopeful. I leave also dreading the bowel prep that I have to start in a couple of days prior to surgery, but this isn’t something new to me. I have had to do a couple of bowel preps before for colonoscopies when we thought that the culprit of all my stomach issues was IBS (I now think it was endo all this time).
It is now surgery day, which is a Saturday. They don’t do scheduled surgeries a lot on Saturdays, but it worked well for me coming from Alaska. My mom and I Uber to the hospital, and I get all prepped for surgery by the nurses and anesthesia. My blood pressure is high; I am nervous. Not nervous about what they will find, but more nervous about what they don’t find. When you are in constant pain, you want a reason for it, and you hope it is something that can be removed so you no longer hurt…or hurt less at least. Dr. Vidali and a general surgeon come by to talk with me and explain everything. I can see my mom get more nervous when they talk about the possibilities that could happen during surgery; the possibility of having to place a chest tube during surgery if they find endo in my diaphragm, the possibility of having to place a colostomy bag if they have to remove a section of my bowels that is covered with endo that they can’t just ablate or excise. She didn’t know that these were possibilities, but I did. Soon enough, I am taken back to the operating room where I am quickly put to sleep.
I wake up with my mom next to me in the recovery room. She said the doctors spoke with her after my surgery and told her what they had found. I don’t even ask her about what they saw because when I try to sit up, I am overcome by intense pain in my chest and shoulders and feel like I can’t breathe. I know this is from gas pain associated with the surgery, but it definitely startled me by how aggressive it was. This pain lasted for a good few days, but thankfully it improved enough over the next couple of days that it didn’t bother me that much when we were flying home. I got up to go to the bathroom with the help of the nurse and my mom, and I felt like I was literally peeing shards of glass. I’m not sure if this was from the surgery, or if I had some sort of urethral damage from when the urinary catheter was placed during surgery, but all I knew was that it was the most painful urination I had ever had in my life. Luckily, this only lasted for the rest of the day on Saturday, and by Sunday it was much better.
Once we were back in our hotel room, and I was more awake, I watched the video again that my mom took of my surgeons explaining what they found. Endometriosis was found on my bladder, both pelvic sidewalls, anterior rectum wall, rectal serosa, left rectal wall, behind my uterus, and on my appendix (which resulted in an appendectomy). They also injected my bladder with Botox in hopes that it will help with some of my overactive bladder symptoms. Thankfully endo was not found on my diaphragm, or on my fallopian tubes and ovaries, which is comforting when/if the time comes when I want to have kids one day. I teared up watching the video of the doctors listing off all the places they removed endo and thought to myself, “I’m not crazy.” Knowing that all this endo was found and removed was a huge relief, and now it was time to focus on recovery. I gave myself blood thinner injections over the next few days to ensure I didn’t get a blood clot flying home so soon after surgery. My mom helped me with my luggage while traveling, as I wasn’t allowed to lift anything over 10-15 pounds. I was given permission to work from home for a week once I got back home. My mom helped with the dogs and things around the house while I was working from home, and I couldn’t be more thankful that she was there while I was initially recovering.
A couple of weeks later, the pathology reports came back for all the samples that they took from me during surgery. All came back as endo or fibrous tissue with foreign body giant cell reactions. Fibrous tissue is developed as a response to injury or damage and is similar to scar tissue; it is firmer to the touch and doesn’t move or operate like tissue normally should. Foreign body giant cells are typically present due to inflammatory responses in your body and are commonly seen when chronic inflammation or pain is present. All of this was very validating to see and hear, but what I really wanted is to feel better. I was never expecting to have zero pain, but I am hoping that I will eventually have a life that is not dictated by how I am currently feeling because of my sometimes-debilitating endo, and now, also adenomyosis.
Today
At this point, my pain has not improved yet. I recently had a follow-up with my surgeon, and he said to give it some time. He said based on the amount of clean-out and removal that he did, he is not surprised that my body is still angry, and that hopefully in a few months I will be feeling better, but only time will tell.
Endometriosis is an extremely isolating disease. I once heard someone say it is like a noncancerous cancer, and I felt that wholeheartedly. It affects you and everyone around you. In some cases, it takes over your life, and I feel in some ways it has definitely done that with me. I have missed out on so many things I have wanted to do because I was feeling terrible: saying bye to friends leaving Alaska, going to the gym, travelling, even just taking my dog for a walk. At times, the pelvic pain is so aggressive that with every step I take, my legs put pressure into my pelvic area that results in cramping and shooting nerve pains when I walk. Endo has heavily impacted my time with friends, exercise, finances, anxiety, depression, and my relationship. It has affected love for myself, as I have had to accept that I often feel like my body is betraying me, and I don’t understand why it can’t just behave like it is supposed to. At 30 years of age, your body just is not supposed to feel like mine does. I have been trying to accept what my body looks like now, as I have not been as active as I normally am. As an independent and stubborn person that likes to do things how I want and when I want, some of this has been very hard for me to come to terms with. I am sometimes angry, and I am guilty of taking my anger out on the people that I love the most. Endo is isolating because no one can understand what you are feeling, no matter how hard they try. Even other women with endo can’t understand you sometimes because it can present so vastly different from one person to the next. Management of symptoms with medication works for some, some others not so much. One person might have a really bad case of endo and have no symptoms at all (which I am honestly quite jealous of in a way), while another person might have an early case of endo and have so much pain, they can barely stand it.
One thing I do know is that sharing stories of endometriosis, adenomyosis, and other women’s health diseases is extremely important. I learned this after I shared my initial writing about receiving my diagnosis of endometriosis. After I made that writing public, I had so many women and friends reach out to me thanking me for sharing my story, and they also shared their personal story in return. I had women message me sharing their symptoms with me wondering if endo could be the culprit. One friend ended up getting laparoscopic surgery and found out that she did, in fact, have endo. Now instead of feeling crazy, she has a reason for her pain and symptoms. Even though these diseases can be very isolating, it is so important to try and create a sense of community and support. Women need to be believed when they are telling doctors what is going on with their body. I’ve said it before and I’ll continue to say it forever, gaslighting from medical professionals is never okay. If a woman tells you she is in pain, believe her. Do not blame the pain on anxiety or “normal womanly pains.” We know what is normal for our body. You do not always have to just grin and bare it. Women have been silent about our pain and health issues for far too long, and as more and more is realized about things like endometriosis, I can only hope that conversations, awareness, and representation become more popular.
Well, if you made it this far in my story, thanks for following along. Hopefully my journey only improves from here, but if not, I will take it as it comes. Thank you to all my friends and family that have encouraged me along the way and have dealt with me during my periods of depression and anxiety. Thank you to those who have prayed for me, thought about me, and have sent me good vibes from near and far. I have felt the love, and I am deeply appreciative. For those who read this and are already diagnosed as endo warriors, have a women’s health-related disease, or think you may have one, as always, I am here for you. Writing has always been therapeutic for me and something I’ve enjoyed since I was little, and it is a helpful way for me to get out my thoughts and feelings, but sharing what I’ve written is not for me, it’s an attempt to try and help others with what they might be going through in case they are experiencing something similar to what I have gone through. Anyways, let’s see where things go from here….
Peace & Love, Sarah
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