Cath's Endometriosis Story
The first time I heard about endometriosis was from my mom. She was diagnosed after giving birth to me and Lar - the doctors could see her endo scarring during her c-section. So as a teenager, I had a vague understanding that endometriosis meant I would always have really painful periods. I didn’t think of it as anything more than that.
Through my teens and early twenties, my pain was mainly around my uterus during my period. I would have such bad cramps and swelling that it felt like I was carrying around a bowling ball. With nothing else to compare it to, I just figured painful periods were a fact of life and I would try to push through the pain. In my mid to late 20s, I started to experience pain around my colon when I was on my period. I talked with my gynecologist at the time and he recommended that I skip my period a couple of months in a row using birth control to manage the pain. That method worked for a while. I would only have pain during the few times a year I had my period. Sometimes the pain got so bad, I felt like I was going to pass out. And yet, I still thought that was just a sign of a “normal” painful period.
After about two years of infrequent periods, the pain became severe. I would take days off of work and not be able to exercise before, during and after my period. It would hurt to sit and stand for long periods of time. Even when I didn’t have my period, my colon pain would flair up at random times, which frightened me. Sharing this pain with others was difficult, and even my closest friends didn’t know the full extent of what I was going through. I would put on a brave face like I’d always done, and tell myself I would be fine in a couple days. This is how endo can isolate you, and why I’m forever grateful for my sister.
By that point, Lar had already had already diagnosed herself and had two surgeries, including one with Dr. Sinervo in Atlanta. He reported that she had Stage IV endometriosis. I remember seeing the photos from her surgery while she was still recovering. The endo looked like cobwebs wrapping around her ovaries. For the first time I understood that endometriosis was more than just a word or diagnosis. It became real to me in that moment, no longer just a term for painful periods or something that could be swept aside after a couple days of pain. Endometriosis was with Lar and I all the time, and our discomfort and pain were justified.
It took awhile to convince myself that I needed surgery. As bad as my pain was, it wasn't as bad as Lar’s before her surgeries so I was worried that I was being too dramatic. Plus, surgery seemed so daunting and scary. It wasn’t until an especially bad period in 2014 that I reached out to Dr. Sinervo and scheduled an appointment for an ultrasound. The ultrasound showed some scarring, but because my pain was around my colon, Dr. Sinervo said he wouldn’t be able to see all the endo except through surgery. I set a date for the procedure, but I still had doubts. I was concerned that I was being overly sensitive or that if I had endometriosis, it wasn’t bad enough to have surgery. If I could go back in time and smack myself for having those thoughts, I would.
I had laparoscopic surgery with Dr. Sinervo on January 6, 2015. I was diagnosed with Stage II endometriosis - I obviously needed surgery. The majority of the endo was around my colon and intestines and not my reproductive organs. I was lucky enough not to need a colon resectioning (always a potentiality with endo surgery), but my appendix was removed because there were endometriosis cells on it.
The worst part about the whole surgery experience was getting a post-op infection a week afterwards. I ran a fever for several days and finally checked myself back into the ER when the post surgical doctor wasn’t taking me seriously. The infection meant more days in the hospital, weeks of antibiotics that made me feel like I was on fire 24/7, and a mixture of anti-nausea pills that I had to take to keep enough food down to take the damn antibiotics. If you had asked me in the middle of that ordeal if the surgery was worth it, I would have given a resounding no. My family was scared, my friends were scared, and I was too sick to even care. For the first four weeks after the surgery, I thought I had made a huge mistake - even after knowing I had Stage II endometriosis.
However, once I completed the round of antibiotics and my strength returned, I realized that my colon pain was completely gone. The first time I had my period after my surgery I had absolutely no pain. The pain free periods lasted for about six months and even when some pain returned it wasn’t bad. I decided to stay on birth control so I could continue to skip my period every couple of months. I’ve continued to stick with that method today and have my period around four times a year. When I do menstruate, I have cramps that are painful, but nothing like I had before the surgery and the colon pain has not returned. I take Semaine the week I have my period and that has made a world of difference. It makes me feel like those first six months right after surgery - little to no bloating or pain.
I do have some scar tissue from the surgery that makes sex and using a tampon painful. Maybe it was naive on my part, but I didn’t even think about the chances of scarring from removing all the diseased cells. I kind of thought of it as magic - laser off the endo, let your body recover for a few weeks, and bam! Good as new! Not everyone gets scarring - or at least not where they feel it. I had a full meltdown when I realized that my surgery resulted in new pain - a different kind of pain and not as intense pain as before, but still pain that made me feel almost broken. I went to a pelvic floor therapist who couldn’t help because the scarring isn’t on my pelvic floor. I went to a regular therapist for month to talk about the unfairness of it all. I also cried to an incredibly unfeeling gynecologist who told me that I just needed to have additional surgery to remove the scar tissue. When I asked her about the likelihood of additional surgery creating more scar tissue building up, she said it was likely.
I’d love to tie up my endo story with a nice neat bow and say that the one surgery changed my life - that I’m completely pain free. Very few endo warriors can say that. So many people with endometriosis require multiple surgeries, have other complications or continue to have severe pain on and off their period.
After a couple of months of cursing my fate post-surgery, I began looking at my endo journey in a more positive light. Some months are easier than others, but I make a point of acknowledging how lucky I am and have been. How lucky I am that I have a sister who diagnosed the two of us and talked me through everything. How lucky I am that I live in the same city as one of the leading endometriosis surgeons and was able to figure out a payment plan for the surgery. How lucky I am to have a brother-in-law who figured out the Semaine formulation that helps me every time I have my period. How lucky I am to have access to endo social media accounts that help me realize that I’m not alone. And most importantly, how lucky I am to have such a supportive network of family and friends.
If I had to do it all again, I would. For so long I had no idea what endometriosis was and to what extent it affected my life. Even once I figured out what it was, I thought surgery would “cure” it and everything would be better afterwards. Now I know, just like almost everything important and big in life, living with endometriosis isn’t a sprint. It’s not a disease that magically disappears with surgery. Learning to live with endo is a lifelong marathon. I see it as a journey - learning to take care of myself, listening to my body, and voicing what I need to be healthy.
If you haven’t done so already, read Lar’s endo story here.