Chronic Pain, Endometriosis, Health

My Endometriosis Story, by Dawn Ogle

Chronic Illness Warrior, Dawn Ogle, suffers from Endometriosis. Dawn has agreed to add her face and story to Faces & Stories of Fibromyalgia/Chronic Illness. I am so grateful that Dawn has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Dawn by following her on Instagram.

My Endometriosis Story, by Dawn Ogle
My Endometriosis Story, by Dawn Ogle

Where do I even begin? It all started around the time I was 13 years old, when I had my first menstrual cycle. They were extremely painful and heavy. I had to miss school during my cycles almost every month. I fell behind in school because of it. I was told it was “normal”, and eventually my body would get used to it. I never did. 

Once I turned 15, my doctor recommended birth control pills to help with the pain and bleeding. Although it helped to get my cycles on a regular track, it did not help with the pain or heaviness of it. Instead, I was still missing school, though only near the same time every month. I continued on birth control for years as it was the only treatment that my doctor could recommend. 

Once I hit 24, I was having a lot of bowel issues … Pain when I had to go, pain when going, and a lot of diarrhea. My doctor recommended that I see a specialist and get a colonoscopy to rule out Crohn’s disease. I had the procedure done, and the doctor found nothing. He wrote it off as irritable bowel syndrome.

By the time I hit 25, the pain was so excruciating. It was not only happening during my menstrual cycles anymore. I was getting no relief for anything. I would wind up on the floor in the fetal position crying out in pain. Nothing would make it go away. I couldn’t move, breathe, or get up. I was stuck in a never-ending cycle of hurt and frustration.

By the time I was 27, I’d been in and out of the hospital numerous times for the pain. I wanted them to find something to explain what was causing the pain and agony that I continued to go through. Every time I left, after many tests, they told me I was fine. The last time I went, at almost 28 years old, I was told that it must just be pelvic inflammatory disease, because they had no other answers for me. Something told me that wasn’t right, but I went on my way.

A few months after I turned 28, I became pregnant, and at 32 weeks, eight weeks early, I went into preterm labor. I ended up having an emergency c-section. While on the operating table, I heard the doctor shout “What is all over your uterus?!” I will never forget that moment. Of course, I had no idea and neither did she. She explained that my uterus was covered with lesions and that it was barely recognizable anymore. They sent a piece of a lesion for a biopsy.

I stayed on the operating table, still cut open, as they didn’t know if they would have to do more surgery. The results of the biopsy took too long and my spinal tap began to wear off. I started to feel everything. Excruciating pain. They ended up administering general anaesthetic after they had pumped me with so many medications, which weren’t working, to stop the pain. 

When I woke up, they told me that they had found endometriosis. It was the doctor on call that had done the operation, so she told me to speak with my regular OBGYN regarding what to do about it in the future.

Once I was out of the hospital, I had my follow up with my regular OBGYN. She told me to just continue taking birth control, and that would fix all my problems. I knew that wasn’t true because it hadn’t helped much in the past. I found a new doctor.

Laparoscopy

Honestly, I hadn’t done much research on endometriosis and how to treat it, so when I saw my new doctor, he told me that he could do regular laparoscopies to take off the top of the Endometriosis, to get rid of it. I had the surgery a month later, in October of 2018. After the surgery, he told me he got all the endometriosis lesions, and that it was completely gone. I believed him. This was a point in my life that I still had some faith in doctors. By the time February 2019 hit, just four months later, I was back to the agonizing pain. I knew it was still there or had returned. I knew he had lied to me.

I spoke with the doctor on the phone. He told me to try a drug called Orilissa. I told my husband about it. He did a lot of research on the drug and didn’t think that it was a good idea to take it. I didn’t listen to my husband because I was desperate for relief. I took it for two months. During those two months I experienced extreme insomnia to the point that sometimes I wouldn’t sleep for days, severe hot flashes, and then my joints in my legs began to ache. I stopped the medication, and the pain started to subside. I stopped taking it in mid-April 2019. I still get some joint pain, but it has lessened quite a bit.

After I stopped the medication, the OBGYN, who had done the laparoscopy, told me to take Orilissa, then told me I could take a Lupron shot instead, which is much like Orilissa. I decided to find a new OBGYN instead. 

I found a new OBGYN and I thought he was fantastic. He listened to me, he was there for me, he took me seriously. He started me on Depo Provera, and I thought it would help me. I started that in July of 2019. By August 4, 2019, I began my menstrual cycle, and it went on for weeks. After the third week, I contacted my OBGYN and told him what was going on.

He said he would schedule me for an endometrial ablation. That got scheduled for September 12, 2019. I bled from the 4th of August to the 12th of September, the day that I had the surgery. An endometrial ablation is where they take the lining out of your uterus, so you don’t have a menstrual cycle anymore. Having that done, and having the Depo Provera, I seemed to be doing alright.

At the end of January 2020, I started having a lot of pain again. Pain that just wouldn’t go away. Pain that seemed to haunt me, especially when I wanted to do something. I contacted my OBGYN. He told me to come in. During my appointment, he did a pelvic exam, and when he looked inside my vagina, he could see that the endometriosis had spread to the walls of my vagina. That is very rare endometriosis. He was also able to feel that my Pouch of Douglas, the space between the vagina and rectum, was obliterated. When I had my first laparoscopy, I was also told it was on my gall bladder, cavity walls, as well as other places. I had stage IV endometriosis, and it was spreading fast. My OBGYN found it fascinating as he had never seen anything like it, and had also never seen it move so quickly. 

While in my OBGYN’s office, he told me that the only thing he could offer to help was Orilissa. He knew that I had taken it before, but that I should give it another try. I told him absolutely not. That is when I went home and went searching for someone who truly specialized in endometriosis. I live in Virginia. My husband and I found a place in Georgia that is supposed to be really good, but it is out of network for insurance. I was desperate and so we decided that we should give it another shot.

That was when I found an Endo specialist right in Virginia. He did his fellowship at the place in Georgia. Our prayers had been answered. I wanted to talk to him about excision surgery and possibly a total hysterectomy. I was excited and nervous about the appointment, as I had seen so many doctors already. It has been fifteen years that I have been undiagnosed. I only received the diagnosis by chance during a c-section. I still wonder if I would still be undiagnosed if I hadn’t had that c-section.

At the appointment with the Endo specialist, he sat with me going over my symptoms, what I had done, what medications I had taken, what helped and didn’t help, when my pain was worse, what caused it to be worse, on so on.. This took about forty minutes. He was very thorough. 

Then came the pelvic exam. He was able to see the endometriosis protruding through my vagina. A rectal exam followed, where he felt what seemed to be a nodule. He also did an ultrasound. He came in to do it himself instead of an ultrasound tech, which is what I am used to. He noticed that the nodule of endometriosis that was coming through my vagina, was also on my uterus, and was so long that it was the same nodule touching my rectum. It is 15 mm in length. For it to be considered deep infiltrating endometriosis “DIE”, it has to be at least be 5 mm. I was astonished at how big that one area of endometriosis had grown. During the ultrasound, he was also able to see that my right ovary was adhered/fused to my pelvic wall and my left ovary was adhered/fused to my uterus. They were completely immobile during the ultrasound.

He has recommended excision surgery to remove all the endometriosis, and there after, a hysterectomy. Also, due to it being on my bladder, he is recommending that a urologist be on call in case I need surgery there. A colorectal surgeon will also be in the operating room, in case I need bowel resection to be done and at the same time, to take care of the DIE.

He was very knowledgeable, very kind, and the appointment lasted about 2 hours in total. He never rushed me and I felt taken care of. Now I have to get an MRI done to see if anything else can be found, get scheduled for a consultation with the colorectal surgeon, and then finally get scheduled for my surgery. It’s going to take a little time to get all of this done, but I know it’ll all be worth it.

I am still on my journey, I am nervous, scared, yet hopeful. Hopeful for answers. Hopeful for help. Hopeful to get my body back since I feel like it has been taken from me.

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