The Unspoken Reality of Endometriosis – My 14-Year Struggle

I have wanted to write about endometriosis for a long time but for some reason I don’t want to feel the feels of what it was like. It’s been easier for me to discuss the ongoing challenges I have with mental health, and it is true that whenever I write about something that happened in the past with my violent imaging or suicidal ideations, I am taken right back into it. I feel like it is healing though to do that and accept it fully by letting myself feel what it has been like. For some reason I don’t like to think of the pain that I went through with endometriosis, I think it bothers me to remember all the suffering and all the constant questions. Some answers are only hypothesized by myself feeling better but are not definitive in helping everyone. The disease is so complex and takes so many different forms, I’m not going to try and discuss all those, I’m just going to stick with what I know which is me. I’m not a doctor, I’m not in the medical field, I am only someone who has researched to death endometriosis and the role that it played in my ischemic colitis bowel attacks. I am going to explain it to the best of my ability to help others who may be in that similar situation, again I know there are so many different causes and forms of endometriosis.

Endometriosis pain was similar to my violent visions of plunging a knife into my stomach. Through some of the painful episodes I would see a knife cutting into my abdomen and in a circle to take out all the parts that may have been responsible for the pain.  The pain was excruciating, like cramps that went right into my back. Okay I’m looking for a description for everyone to relate to but what I still keep seeing is the knife or a locked vice grip that releases on and off, similar to labor cramps. It’s also like the pain of a mammogram which the vice grip pushes as hard as it possibly can on your tender tissue, you hold your breath, try to breathe, release and then it’s over. Except it’s not over that was just one minute in your marathon of hours and hours, episode after episode.

I can’t possibly explain every episode over 14 years but I’m coming to terms that I may be in fact recovering. I feel scared to write that. I feel scared to say it out loud. I feel scared that it will hear me and come back with a vengeance.  I am afraid of it to such an extent that my fear of it keeps me from not wanting to even think or talk about it. However, I am going to face it, stare at it, and tell you what I think is giving me a remission of the pain. Again, no doctor here so don’t come at me and this is my circumstance.

My large endometrioma was removed with my one ovary in 2017 and I was diagnosed with stage 4 advanced endometriosis where my pelvis was considered fully locked and tied in tight strings resembling a crow’s nest. Thankfully for me the endometrioma had grown so big (the size of a small orange) that they were finally able to see something on ultrasound. The pain episodes finally had a name, a cyst on my ovary.  I have no idea how long my diagnosis could have taken without that. That was 7 years after my first episode. It is said that usually endometriosis takes about 10 years to diagnose, so lucky me for only 7 years of wondering just what the hell was in fact wrong with me.   

I was put on Mirena to stop my periods, and they did, and my pain episodes were very minimal. In 2020 it came back with a vengeance, like it wanted revenge for me stopping it’s growth for three years.  My bowel attacks started happening and I explain in detail all of that in my book, The Thoughts I See, so I won’t go through it all but just give a quick summary. I was put on Lupron to completely halt my one remaining ovary’s estrogen to stop the continued growth. Without discussing mental health and side effects I will say that this indeed did stop the painful episodes. This is how they knew I should be ok if they gave me a complete hysterectomy and removal of my remaining ovary to stop the estrogen from continually building it.  Endometriosis can make its own estrogen to keep building which is sometimes why hysterectomy and removal of ovaries does not work. 

For myself during this hysterectomy my surgeon was also going to do excision of all the endometriosis, cut it all out and try to free my organs.  From what I could tell, he was extremely skilled at his job and looking back now even though there were other complications, I would say that he had fully removed all endometriosis along with my reproductive organs that helped it to grow. I would say now that what he did was life saving for me. I didn’t know it at the time because I had other complications, and it would take months and months to get over some of the pain and challenges. Long story short, besides some regrowth of endometriosis on the seam of where they cut off my uterus that had grown back, there was no other signs of it from an MRI. They can’t always see it through but now that I have been over a year with little to no episodes, I am crossing my fingers and saying that my surgeon did get it all and there must be minimal regrowth now that I am in full menopause. I say minimal regrowth not because I know that but because my lack of pain episodes suggests it to be true.

I am still on guard; I am still scared that tomorrow the pain will return, and I will be wrong about all of this. Most of my attacks would happen about an hour or so after I went to bed, I am finally able to go to sleep and go into a deep sleep without my mind telling me to be on standby for the next episode.

I am sad for all those that suffer and it is hard for me to watch tik Toks of people explaining what they are going through. I feel somewhat guilty that I feel better, and they do not. Kind of like watching a hurt wild animal that you cannot do anything to save and all you can do is just pray for peace for them with their pain and hope they will be strong and continue to survive. Continue to survive my friends, don’t give up hope. I couldn’t give up on myself and you shouldn’t either. Whether this remission is long and forever or short and notwithstanding, I need to face that I am recovering, and the painful memories are just that, memories.  The past doesn’t always predict the future, sometimes you get a fresh start and instead of being scared that my fresh start will collapse I should be grateful for the pain free days that I have had. So instead of being sheepish and quietly saying yes, I am feeling physically better, I need to shout it and believe it, I need to step over those fears because continuing it just continues the hold that it has had over me. So, endometriosis goodbye, good riddance, I hope to never see you again. Me and my friends are going to beat you to the ground.

Chat again soon,

Michelle