If you cannot handle a lot of medical details this is a warning to stop reading. Not super horrible but just my experience in the last 1.5 years.
I’ve always had issues in the menstruation department. Unfortunately I ignored it for most of my adult life. I didn’t care about myself in so many ways. I ignored myself from the lack of a period all the way to the extra periods. At one point I would pray for it to return when it was gone. Fall of 2020 I had a wake up call. I was scared to go to the doctor and nervous for the outcome. You see, I have dealt with depression for most of my life and hid it from the world. I didn't take care of myself physically because why should I? No one cares for me or ever will, was my mindset. I was diagnosed with Type 2 diabetes NOV 2020 and have controlled it with diet and exercise now but that was eye opening to how I took care of myself. That wake up call made me start to believe that I was worthy of love and worthy of taking back my health.
August of 2020 I began abnormally bleeding. This was daily or every other day. Some other signs were there in the past but I ignored them. Over time I finally went to the dr. I got an appointment for December 2nd, 2020. Unfortunately I had a Covid-19 test a few days prior and had to cancel based on waiting for the results. I just dealt with what was going on and a few weeks later I made a new appointment for the first week of January. I arrived in great fear and was riddled with anxiety at what was coming. The doctor was an older male and had little kindness, patience or understanding towards me. He wanted to do a few procedures but I was not comfortable with it or honestly with him. He decided to put me on birth control. I began taking the pills and thought everything would be fine but that was not my experience.
I began to bleed extremely heavily for a week. Monday January 17th, 2021 I was driving back to Portland from Medford OR with some family members. I began bleeding extremely heavy with large clots needing to stop every 45minutes or so. I barely made it home in excruciating pain and bleeding through everything. I had so many clots and I got in the shower bawling my eyes out pulling them out one by one. I called the advice nurse and they got me into an appointment that day but I live 40 minutes from the clinic. I drove there scared out of my mind. I got there late and the nurse came out and said I was too late and they should not have given me an appointment anyways because they had no time. I had another clot coming and cried to her asking if I should go to the ER. I went to the bathroom and when I came back out the nurse found me and said the DR (Anne) would see me. I went in and the DR was very mad at the previous one who put me on BC because she knew I should not have been given BC. She knew I had too much estrogen. She was grouchy and it was the end of a long Monday. She did a pap and that was a lot for me as it had been 15 years. I was given a medication to stop all of the bleeding and awaited the results. The pain and clotting was similar to being in labor, your uterus is a muscle and contracts to push out what is in there. It was painful but nothing compared to what came next.
A few days later thankfully my Pap result was fine and normal. I was told I needed an endometrial biopsy at the previous appointment but couldn't do it that day because I was not prepared mentally. We schedule one for a month later but it was not with the same DR. The weekend before the new scheduled date in February I had so much anxiety about the biopsy. You see I was a virgin at the time, Yes, that is right. Nothing besides tampons had entered me before. I know that is too much information but it is part of the journey in this saving of my uterus. The pap was enough for that previous appointment day. I couldn't handle the thought of the endometrial biopsy as I had looked it up after finding out that I needed it. I canceled my February appointment and did a video appointment instead. The person I saw was not Anne the amazing doctor at my last appointment. She said I can put you on this medication and see if it helps for 3 months. Then at that time we can do a biopsy if needed, I thought that was a good plan. I began the medication and stopped the one that had worked well. Within a week I had hormonal headaches and some side effects by Saturday I began having excruciating pain and large clots. I was in my bed all day. I could hardly move and bled so much with each clot. My bottom, tail bone and low back hurt as the pain radiated in and out. It was like I was in labor. It stopped late that night and I was okay for 6 more days until the next Friday when it happened again. Large clots and so much pain. I called the advice nurse and she said it was normal and should stop soon. Then another week went by and it started Sunday, then Monday, then Tuesday. Three days in a row of labor like contractions pushing out clots. Thankfully at night I was okay and it subsided for the most part. I cannot tell you how many pads I used, how much time I spent cleaning blood off of clothing and washing my bedding. So much pain and anxiety. I called the advice nurse again and was given a new appointment for April 12th and told to take the previous medication again which immediately worked. I was given a prescription for an anxiety medication to take for the next appointment and all set to go even if I was apprehensive.
April 12th came and I had my dad drive me to this appointment because the medication was going to inhibit me from driving. I took my head phones and used relaxing music. I had DR Anne and she was the sweetest kindest woman. Anne is extremely gracious and has an amazing bedside manner. I made it through the biopsy with pain but got through it (was not pleasant) and was on the medication so that helped. I went home and rested and slept from the medication but when the medication wore off it felt like I had been violated from the speculum/instruments/everything. It felt like it was still inside me. This was mind blowing and traumatic because I was fine but yet didn't feel like it. I took the next day off and had to mentally figure out where to go from here. That feeling is like nothing I can describe. I woke up early that Tuesday morning and drove to the Gorge. I picked a spot many photographers I followed go. It was so healing to just be there and watch the sunrise. I needed that and it began a new tradition and exciting thing for me. I went to a waterfall as well and felt so peaceful. But then the results came and crushed my heart. . .
I received a call from my OBGYN on Wednesday and the diagnosis was scary. I had Complex Hyperplasia with Atypia. - Pre-cancerous cells. She recommended a hysterectomy because 40% of women get cancer with this diagnosis. If you know me my greatest desire is to have a baby and be married. I was given a few more options and chose that I wanted to save my uterus. I fell on my bed after that call and bawled my eyes out for three hours. Grieving the life I wanted and not knowing what my future held was devastating. I was referred to a Gynecologist Oncologist and had an appointment for an ultrasound the next day. I went in and then saw the Gyn-Onc on a video call. She was optimistic and said I have an 80-90% chance if there wasn't already cancer. They needed to do a hysteroscopy and make sure cancer wasn't any where in my uterus. They would also do a second biopsy and made sure everything was okay. I made a scheduled surgery for one year ago today May 20th, 2021 with DR Anne.
From February -April 15th I was on 1/2 of a pill of Megestrol a day. I woke early in the morning and I didn't sleep well but the two options for treatment were get an IUD or take 4 pills a day of Megestrol. I did not want an IUD so took the pills. That was horrid. I couldn't ever get any rest or real sleep. I had every known side effect (look them up if you want all were true) and the worst insomnia of my life. It was literally hell. A few days before my surgery I asked peoples opinions on an IUD and ended up choosing it and telling DR Anne a day before surgery I wanted it. I couldn't do these pills anymore. IUD ended up being the best choice for me.
Surgery day came and I was apprehensive. I went in and it was delayed 4 hours. I got it done and then came out of the surgery in a fog. My Doctor was so fantastic with the delay she was kind and so sweet to me. The nurses were fine and I felt okay but was nervous to go home. I was anxious but used music to get me through. When I came to my blood pressure was normal but as time went on sky rocketed. They didn't want to let me go but I promised to go in if I felt off. I had some relaxers and pain meds for at home. Walking up the stairs was hard but the worst was urinating. It was painful and uncomfortable and unexpected to be so harsh. I recovered for a few days and needed a few more. I had quite a bit of pain as they had inserted the IUD during the surgery. I didn't bleed a ton and that was so nice but I was still taking the Megestrol pills and experiencing insomnia and all of those side effects.
I received the results. Still the same outcome as the last biopsy but inconclusive for cancer. These results scared me. I was emotionally overwhelmed and concerned. My personal life was a wreck at that time too. There could be cancer in my uterus and I wouldn't find out until September if it was or not. I went to the coast a week later and felt some weird feelings and not fully recovered. I was able to slowly start life again but two weeks after surgery I was hiking and when coming down from the waterfall felt like my cervix was being torn, I thought for sure the IUD was coming out. So what do I do? I laid in bed all weekend and got into the DR Monday. Thank God it was DR Anne on call that day and I was able to see her. She knew immediately it was the strings of the IUD. I had them cut and then she did a pelvic ultrasound to make sure all was well. She said I needed a second Hysteroscopy and they would do a biopsy as well in September. Just the week before on June4th she had let me know I could stop the medication that had all of the crazy side effects. I was liberated and felt amazing for the first time in my life. My hormones had not been normal for a long time and the Morena IUD was helping me regulate them. Seriously July 2021 was amazing for energy and happiness overall.
I had a great group of believers praying for me throughout the last year. I was supported in many ways through Christians that I knew and strangers. I was so fearful though, I was hurt and angry and had to learn to forgive myself for not taking care of my body. In December I surrendered the hurt and pain to God and said you have to help me with this I cannot take it any longer. I gave up my right to a child and just said I am believing God for the best outcome. It was a tough process. I used so many coping mechanisms that were detrimental to my mental health in this lifetime. (see previous blog) I listened to "Goodness of God" by Jenn Johnson countless times. It was on repeat for hours on end. I wasn't ever alone even when I felt like I was. Walking through this brought me closer to God, taught me to believe him and surrender. I walked through a lot of healing in so many areas throughout the last year.
September came and I was scheduled for surgery on the 2nd. It was postponed due to Covid-19 shutting everything down here in Oregon again. My DR advocated for me and got me into a different Kaiser facility across the metro area. I went in for the Hysteroscopy and had less anxiety. It was at a surgery center on the other side of town and a much faster time frame. DR Anne met me there and was able to preform it without delay. Recovery was much easier this time and I felt pretty good by the next Monday. Then I was diagnosed with COVID and my life was on hold for many months. I received the results quickly this time and the same results Complex Hyperplasia with Atypia but CANCER was NOT present. I celebrated the win but was disappointed in the no other changes. This is when I found out I had prolapse after my surgery. I noticed some things that were off. This is something not many women talk about. I will spare the details but it is not fun!
During the time between May-October I had weird IUD side effects the nipple pain was extreme. I had no idea that could happen. But I was good in so many other ways it was worth it. January I had my 4th biopsy in the office and survived without anxiety medication. I even drove myself to the office. I had a few complications after this one and needed more drugs but it gave me fatigue as I ended up with long haul covid. The results took a long time to come but showed there was no longer any presence of Atypia cells. I was ecstatic at such a huge change. I still was disappointed in the complex hyperplasia. I ended up with a huge battle with fatigue and long haul covid symptoms for a few months. Anne talked about my uterus and how it was a mess when she first went in. The second Hysteroscopy she said it looked so much better and she just wanted to make sure she got everything she needed to.
April 5th 2022 I had my last Biopsy. I wasn't as anxious and got through it okay. I even was able to slow my breathing and talk to the doctor throughout everything. DR Anne joked that I deserved a new car for all of my procedures. The nurse looked at me with pity and said something along the lines of, "I am so sorry girl." By this time I was used to what was happening and thought recovery would be easy, it was unexpected to have a lot of pain and bleeding after this biopsy but I got through it. I couldn't take anything other than Ibuprofen because it brought on long haul symptoms in the past. Within 36 hours DR Anne had emailed me with the results that my biopsy only showed the effects of the IUD and NOTHING ELSE. No more Hyperplasia. No issues whatsoever. We were both overjoyed and I was in shock. I have to have one more Endo-biopsy in July and then after that it will be a year if the results are normal.
I know this was a long story but it was my reality the last year. Many details were left out and the true experience of it all will seem foreign to most of you. In reality it is much more severe and real to me than I can put into writing. The tears, the sorrow, the pain, the shame, the guilt, the hurt, the side effects, so much to this process. I am so happy to say where I am at now and how well my body has responded to treatment. I am just so grateful to all of those who have supported me in so many ways.
