Well, technically August 3rd will be 8 months post-op, but we don't get too technical on this blog! Hehe! As I slipped on this super casual and comfy outfit, I was reminded of last summer and the pain I was experiencing. Anything that was remotely "form fitting" or included elastic bands were almost unbearable to wear. I spent most of the summer crying in discomfort and absolutely hating that simply getting dressed was a challenge. I didn't feel sorry for myself, but looking back now, it was a terrible way to exist.
**Skip the rest of the blog if you don't want to read about my GYN health journey**
Why at 38 (going on 39) did I have a hysterectomy? Well, the short answer is living with pain for years. The long answers is this: At 34, I started really experiencing terrible periods. Like, bleed-through-everything, pain that makes you double over and feeling like you got run over by a truck and MASSIVE mood swings, sorta periods. Admittedly, I didn't have a OBGYN at this time nor had any yearly check ups for several years. I figured, I was married, had no need for birth control and had good health care in the past, and the big one: no heath insurance. Well, luckily I was working for Cats Like Us at the time and they started to offer health insurance and I was able to get to a OBGYN.
I was diagnosed with large ovarian cysts and started a regiment of birth control to try and shrink the cysts to avoid surgery. Luckily the birth control helped the cysts, controlled my periods and helped with the mood swings. Wahoo! This lasted a few years and then the pain started. The left side pain first started as a dull ache that would come and go. I addressed this with my OBGYN and she said, "Oh, that has to be GI issues and is definitely not gynecological." Well, that then started trying different diets (mainly going gluten-free) and having my general physician doing all sorts of testing. With no answers, I wound up at a gastroenterologist. Now, to be fair, my mother has Crohn's Disease (she was diagnosed at 40-ish and is now 70, so yeah), so this was a legitimate concern. After being put on different pills and even having a colonoscopy, everything in that department was good. I do have IBS, but I also have anxiety (I take meds), so that wasn't something I was surprised to hear. What I didn't want to hear was, "We don't know why you have left side pain, maybe it's OBGYN related." I forgot to mention that this was December 2018 and I had the colonoscopy the day after my birthday. Meh, lol!
So, I took a deep breathe, gave myself some time and went back to the OBGYN in February 2019. I needed to get to the bottom of this left side pain. What did the OBGYN say to me, after I told her everything I *just* went through? The same woman who told me it couldn't be gynecological? She told me, "Ohhh nooo, it's definitely GYN and not gastro!" *Pause for internal screaming* She then sent me for more internal sonograms and again, no answers.
Fast forward to April 2019. I was on vacation visiting my best friend in Arizona and that's when the bleeding started. Now, I was on continuous birth control and had been for years. So, I didn't get a period at all and if I did, it was a little spotting for one day and there was no period pain. So, when I started bleeding, I knew something was wrong. I didn't feel right and it hurt like hell! The bleeding continued for a month and once again I found myself back at the doctor. She wanted to address the bleeding first, so I was put on a completely different birth control at twice the dose and HOLY HELL that was torture. I felt like I had lost my mind for a month, both mentally, emotionally and physically. The bleeding stopped, but it was an intense roller coaster! And again, no answers. I was sent home several times with different medications and basically shrugging of the shoulders. I was even put on a medication that was for women who had surgery for endometriosis (it could potentially help with my pain even though I never had surgery?!), but I had to stop taking the birth control. So, when I ran out of the trial medication, I was in pain, the trial meds didn't even work, and I was confused about what to do next. I called my doctor several times expressing concern and I never got a simple call back. I was so exhausted and upset, that I called the practice's other location (there are two) and expressed to the receptionist my concerns and completely broke down. This poor woman was so kind to me as I squeaked out what I was going through, as the tears poured down my face. (I'm tearing up just typing this) I wanted to see a different doctor. I wanted to simply know what to do next as my body had gone through hell with different pills, tests and internal and external sonograms. I was at the end of my rope and all I wanted to do was get a simple phone call back. I felt like I was 'tattle telling', I feared that this was all going to get back to my OBGYN and I was going to be in trouble. I felt horrible that I had cried on the phone to a total stranger, and after hanging up the phone I felt venerable and small. And you know what? It did get back to the doctor. All of it. I got a phone call and an apology and thus another face to face appointment was made. And let me tell you, when she sat down and said, "Okay, let's start from the beginning", I was floored. ARE YOU KIDDING ME?! I kept my shit together and went through the past 5 years of what I had gone through and this time I was not holding back. I said how disappointed I was that all these steps were made and nothing has come to a diagnosis. I expressed that I couldn't live my life with this pain, as I knew there was something that could be done. I would not except it. Nope. She listened and I got many apologies and things like, "These are the steps I had to take in order for insurance to approve any sort of treatments" or some bullshit like that. So, I said I would do whatever it takes.
Soooo, off to another internal sonogram I went as we were, "starting from the beginning".
At this point I was in so much pain that I could barely lay down for the wonderful sonographer. Her and I had gotten to see each other a lot these past few months and she felt terrible for me. We would normally chat about pleasantries, but this sonogram session was painful and thus I just tried to not scream in pain. Her reaction was different too. When she was done, she got up and said, "I need to speak to the doctor right now". She left and I got dressed and as she walked backed in, she said, "The doctor wants to speak with you." I finally had a name to what was wrong with me, adenomyosis. It was the dear sonographer who spoke up for me, she was the one who 'got it', she really truly is an amazing human being. I felt like a weight was lifted and that I wasn't making it all up. I was in pain, I was not okay and I don't need to apologize for any of it. I got an answer! So what was the solution? A hysterectomy.
"HYSTERECTOMY!" I exclaimed to the doctor. I was shocked. Not only because I had never heard of adenomyosis, but I just didn't think a total removal of my uterus was a treatment option. I never wanted to have children, so that wasn't a concern, but major surgery was a concern. Luckily for me my OBGYN referred me to Dr. J (who so happened to be in the same office) and thus this tale of misery turns into a tale of joy. Dr. J is truly an angel. Not only did she listen to me, answer all my questions, she kept me in the loop every single step of the way. She really listened, like I could see the understanding and concern in her eyes. She cared for my welfare when I spoke of the years of pain and frustration. She laughed with me when I would crack my anxiety fueled jokes and most importantly, she was there. As in, she always returned my emails or calls and always had positive advice.
I had a robot assisted hysterectomy on December 3, 2019. It was rough at first in the healing department, but I am now 8 months post op and looking forward to the future. I am free from GYN pain (unfortunately I'm experiencing some wicked back pain right now) and can't believe these past two years and how much I put up with. Not only with my health, but in my personal life. I am seeing things a lot clearer now as I can.....well, think! It's hard to live with constant pain. It's like an all consuming void. So, just know those who suffer, I believe you and I am here for you.
Oh yeah, that doctor who gave me the run around? She's no longer with the practice and Dr. J is my official doctor! Wooooohooooo! If I have learned anything from this experience is don't let a doctor or anyone intimidate you or make you feel like your person isn't important. Be your own health advocate (if and when you can) and fight.
