As I went through months and months of various symptoms, including excessive and abnormal bleeding and pain, I always half jokingly said that I wish I could just have my uterus removed.
Well today, that became my reality when I had a hysterectomy.
I started my period when I was 11 years old. When something is always one way, you don’t realize it’s not that way it’s supposed to me. That’s how I felt about my periods and my own reproductive health. I have always had to wear double protection and still worried about leaks, carrying clothes with me wherever I went. I didn’t know that wasn’t normal until I was well into my college years. It was my normal.
Fast forward to my early 20s, when I decided to go on consistent birth control. As a public health professional with an entire career focused on reproductive health and counseling about birth control, I knew my options and it was an easy choice. I wanted a hormonal IUD, not only to act as an over 99% effective form of birth control, but to help control my periods and potentially get my hormones in check as they have affected the rest of my chronic illnesses.
As well known side effects of IUDs, I didn’t worry when I began having the expected irregular and prolonged bleeding. That I could deal with, as I had other health priorities. “Periods” (because I would still bleed whenever my body felt like it and for a consistent 10-12 days at a time), became debilitating. After almost three years, ultrasounds, pelvic exams and blood work, I couldn’t take it anymore. My doctor thought it was just hormones, a “sensitive uterus”, and my chronic illness ridden body causing the issues, which I accepted and had my IUD removed.
The day I had my IUD removed, I had a Nexplanon implanted in my arm. I was so hopeful that both the bleeding and pain would subside, especially since this form of birth control was not in my uterus. I was wrong. The issues seemed to get worse. At first, I justified not going back to the doctor on the normal changes your body goes through on different forms of birth control. Then, I blamed it on my already defective body.
However, this is when sex began to become extraordinarily painful, to the point where I would cry. I would then begin to bleed, and secretly cry in humiliation. I wasn’t in a relationship and sex didn’t happen that often, so it wasn’t a priority. Until it was. I went from bleeding whenever for 10-12 days at a time, to constant heavy bleeding for four months. It was time to do something about it. I went through the motions of going back to the doctor, pelvic exams, lab work, and ultrasounds. The transvaginal ultrasound was miserable, feeling like my insides were being ripped apart. I was in distress and crying from the pain, but all the results came back negative. Once again, the issues were blamed on hormones and my crazy body and I had the implant removed after two years.
I opted to not be on any form of birth control after the implant removal. I knew something was wrong and birth control was not helping. As soon as my birth control was removed, my bathroom looked like a crime scene or a scene from Gone Girl every few hours with the amount of blood I was losing. Every time I showered, it looked like the shower scene from the movie Psycho. The pain became so unbearable that even a cocktail of three extra strength Tylenols, Tramadol, and Oxycodone, together wouldn’t bring relief. My irritable bowel syndrome (IBS), was in more of a flare than it had ever been. Being part of the chronic illness community and knowing someone who recently had similar issues, I reached out and found one of the world leaders in pelvic pain/abnormal bleeding, Dr. Karen Tang.
After spending over an hour in the exam room with Dr. Tang, I came out with signed consent forms for a hysterectomy. This was not a decision I had taken lightly and made on the fly. It was something that I had been thinking about for awhile, after years of debilitating pain and heavy bleeding. Due to my other chronic illnesses and medications that I take, I have always known it would be difficult for me to carry a child. In fact, I had done extensive research over a year prior about freezing my eggs for the future. I also have a family history of gynecological cancers and fibroids, which made a hysterectomy a preventive option. Third, I have gone through most of the clinical options that I am able to take or do (that aren’t contraindicated with my other meds/illnesses) that would help lessen my bleeding, with no avail.
Furthermore, Dr. Tang after listening to my symptoms and performing an extremely painful pelvic exam, believed I had endometriosis and adenomyosis. Endo is a painful, potentially debilitating condition that causes the lining of your uterus (endometrium) to grow outside your uterus. The endometrial tissue can grow on your ovaries, fallopian tubes, and pelvic lining as well as the outer wall of your uterus. It can even grow in areas outside of the pelvis, such as the diaphragm, belly button, or lungs. It affects 1 in 10 women and is typically diagnosed with a laparoscopic surgery. Endo can be treated through medication or excision surgery. Adeno occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus and is typically diagnosed and treated after a hysterectomy. Knowing how my body flares and how tough it is for me to recover from a surgery, I didn’t want to have to go through a laparoscopy and still have to have additional potential surgeries in the future. Even though a hysterectomy isn’t a cure for endo, I wanted a one-time shot chance at long term relief. I thought this was my best chance.
The combination of scenarios, symptoms, my medical history and family history, led to the choice of having a hysterectomy to remove my uterus, cervix and tubes, in addition to signing consent to search for and remove endo, and additional necessary procedures. I kept my ovaries, mainly to avoid the massive hormone fluctuations and early menopause.
Unfortunately, the wait time for surgery was four month which is not uncommon for a specialist. Due to my lowered quality of life, I couldn’t wait for that length of time and ended up having the other doctor in the practice, Dr. Sonya Lee, also a world renowned hysterectomy expert, perform the surgery. Two weeks before surgery, I met with her for about an hour where she also performed an excruciating endometrial biopsy. I continued to bleed for the remaining two weeks until my surgery. At one point, through the delirium of the pain and bleeding exhaustion I said out loud, “Well uterus, guess who is getting the last laugh?”
I only told a handful of people about this upcoming surgery, and even with those select few I still felt a lack of support. I wish I wouldn’t get judged for having a hysterectomy before 30. Women have the right to choose what happens to their bodies, with informed consent of course. Although I had a hysterectomy, and I am still just as much of a woman as I was before, contrary to what I have been explicitly told at both the Thanksgiving table and by multiple friends. Do all of the experiences in my 28 years of life just negate the fact that I am a women, just because I am missing a few parts? No. Anatomy does not denote identity or experience. I can still have a child through IVF/surrogacy or adoption, that would be no less mine than if it came from my uterus. I should be able to live judgement free because this was something “I didn’t have to do because I didn’t have cancer”.
I did have fears. This decision was not taken lightly or made on a whim, but had been over a year of being in the back of my mind. I didn’t want to do this aggressive surgery and end up not having relief. I didn’t want to regret this decision, as although it was the best option, it was still my choice. Although I had made peace with knowing I wouldn’t carry a child years ago, the fact that I 100% could no longer do it, still had me in slight mourning. I had fears that I wouldn’t have the physical, mental and emotional support I needed after this type of surgery. I did not want to have to make this decision, nor should someone ever have to be put in the situation to make this decision. However, deep down I knew it was the right choice for me.
Surgery came and went, and my fears became my reality. There was no endometriosis found, even though multiple doctors suggested that was the cause of my problems. Seeing those words, my heart sank and tears welled up in my eyes. There is currently no definitive cause for my pain and bleeding. I spent years being undiagnosed before my POTS and Sjogren’s diagnoses, and here I am taking another blow. Another setback with no answers.
I was devastated and heartbroken. I AM devastated and heartbroken. I felt like this surgery was for nothing. I felt like the agony I am dealing with in recovery was all for nothing. And worse of all, it was my choice. I chose to do this surgery out of all the other options. It was my fault. I blamed myself for the suffering. I blamed myself for not being able to breathe properly or walk for days. I blamed myself for not being able to eat, go to the bathroom or even roll over on my own. For not being able to take care of myself. I blamed myself for the constant severe pain, all over my body and the bruises that appeared. I blamed myself for the bleeding, having to wear foot long pads and mesh undies. I blamed myself for the fevers and about four hours of sleep total in three days. I blamed myself for the hours of sobbing done, partially from the pain and partially from the regret. Could I have waited until March to have the endo specialist perform the surgery? Was there something my surgeon missed? Should I have put myself through the misery of the few alternatives first? I was second guessing and doubting myself and my decision.
I thought I was prepared as I could be. I read up on what it would be like. I had advice from others. I took all the tips and suggestions. However, recovery has been significantly worse than I expected. I didn’t expect the hit from the physical and emotional toll to be this severe.
So here I am, real, honest and vulnerable. Still slightly guilt ridden. I am not okay, which I know sometimes is okay. I am learning to cope as each moment passes by. I am still only less than a week post op and I still have a long way to go. I made the choice that I thought was best for me in the moment. I will have no more monthly bleeding. Even if the pain doesn’t subside completely, I will no longer have bleeding and the subsequent consequences on my overall health. That in itself, is a triumph. I will continue to recover. I will continue to heal. I will continue on my journey.