(Clearly this will be a tmi post. Red X now, if you’d like. I was hesitant about sharing this, but I’m feeling so alone in this, that I’ve decided I have to, if only to find one other person going through something similar or who can offer sound advice.)
It has been a part of my life since that chilly morning 7 years ago when I groggily awoke after surgery at 6am. My surgeon came into my hospital room after my appendectomy/cystectomy to tell me “Everything went fine. We removed your appendix and several grape sized cysts, looks like you’ll make a perfect recovery. Oh, and while I was in there, I did notice some fairly advanced endometriosis, especially for someone your age. You can discuss that with your doctor at your post-op visit.” and with that, he was gone. Leaving me with a million thoughts racing through my head.
Endometriosis. I’ve heard of that, we briefly covered it in anatomy & physiology. Something to do with feminine reproductive health, maybe causes infertility? All I’ve ever wanted in my life is to be a mom. What if I can’t be a mom? How bad is it? Can they do anything for it? Is it progressive? Is there a cure?
Travis had gone back to our dormitory to shower and dress for the day, so I was in my room alone. I called my grandma, one of the only people I knew would be awake at such an hour. She affirmed that yes, it could affect fertility and she was pretty sure my mom and other women in our family had it. They had all had children though, that was good news. Trav returned as I got off the phone with her, and I broke down and bawled to him. I had to have babies. I had to be a mom. He hugged me and assured me that even if I wasn’t able to get pregnant, he would marry me anyway. He was a 19 year old boy and had been dating me for 2 months, that was big. I’m pretty sure in that moment I knew I’d be his wife someday.
Since then, I’ve faced multiple laparoscopy abdominal surgeries to “clean it out” since it’s progressive and spreads every time you have a period.
Every month, and sometimes in between (thank you, adhesions), I’ve faced gut wrenching pain, with a bit of relief only by taking constant birth control that doesn’t allow my body to have a period (since endo only spreads when your body has a period).
And since then, we have been blessed with two amazing children, without the help of fertility treatments. My doctors have been shocked each time, as they both assured me that I would probably at least need medications to boost fertility, if not IVF or IUI.
The only “cure” for endo CAN be pregnancy. A pregnancy can essentially fix the whole chronic problem and get things moving in the right direction, instead of backwards.
My doctors have told me that sometimes, in rare cases, pregnancy can make it worse. After I had Jax, I could confirm that that would be the case for me. When Jax was 9 months old, I had another laparoscopy to clean it out. The pain was pretty unbearable before that, and the surgery helped quite a bit.
It appears that I’m going through the same thing after my pregnancy with Jory. She is 8 months old, and I just got my first period in 17 months. It’s bad. Bad doesn’t begin to describe what I’m going through. It has always caused horrible pain, but it has never, ever been like this. I was awake Saturday night until 6am with cramping and stabbing that left me writhing and screaming and telling Trav I wanted a hysterectomy immediately. I don’t know what to do now.
I’m guessing that the slight uterine contractions caused by nursing, in addition to the endo on the outside of my uterus causing internal bleeding right now, is probably the root of the pain.
So do I stop nursing? One of the only ways to get rid of the pain is not to have a period, but that type of birth control would surely wipe out my milk supply so I can’t take that risk.
And we want a couple more children. Not for many years, of course, but how long do I have to deal with this? And if we do wait a few years, will I even still be fertile enough to get pregnant again?
So many things I can’t find answers to. I am 25. I don’t want a hysterectomy before I’m 30 and long before we are finished having children. Does anyone have any experience with this?