What I Wish I’d Known Before Endometriosis Treatmentby Julie Ryan Patient Advocate
In 2013, I had the first of three laparoscopic surgeries for endometriosis. Had I known then what I know now, I could have avoided at least one of those surgeries.
In mid-2012, I began experiencing severe abdominal pain. It started while I was exercising, and initially, I thought it was just really bad runner’s cramps. But the pain continued even when I wasn’t working out. It wasn’t constant, but it was there often enough and hurt badly enough that I went to the doctor.
It took several visits to several different doctors before anyone finally mentioned endometriosis, a chronic condition in which the tissue that makes up the lining of the uterus (the endometrium) grows where it’s not supposed to, often causing severe pain. It then would take a surgery to confirm that diagnosis.
Along the way, I learned a lot that I wish I’d understood before I started this complicated process.
No Pain Is Normal
Abdominal pain was not the first clue that I might have endometriosis. I’d been complaining to my gynecologist for a few years about pain during sex, but she never mentioned endometriosis as a potential cause. She did, however, refer me to a pelvic pain specialist. Unfortunately, that appointment was still six months away by the time endometriosis was first suggested.
I took that suggestion back to my gynecologist and she agreed endometriosis was a possibility. Looking back, I’m amazed at how much pain has been ignored by various doctors throughout my life. Pain during sex isn’t normal. Extreme pain during periods isn’t normal. Yet, all my doctors responded to my complaints as if pain was just a part of life and no big deal.
Not all Doctors Are Created Equal
I already had an appointment lined up with a pelvic pain specialist when my doctor suggested that I might have endometriosis. But I didn’t want to wait. My gynecologist said she could do the exploratory laparoscopy (a type of minimally invasive surgery using small incisions) and I’d only have to wait a couple of weeks.
My gynecologist is amazing, but the bulk of her experience is in Pap smears and delivering babies. I wasn’t her first exploratory laparoscopy, but she did tell me that I was the worst case of endometriosis she’d ever seen. That’s not something you want to hear from your doctor.
She did the surgery and removed a lot of endometrial tissue, but there was plenty more that she didn’t feel she could remove due to proximity to vital organs.
I kept my appointment with the specialist a few months later, and after the specialist looked at the pictures my gynecologist had provided, he felt confident he could remove the remaining endometrial tissue. He was able to do so without any issue. Had I waited for my appointment with him, someone with more experience in this area, I could have avoided an additional surgery.
While waiting a bit likely won't make much difference, choosing an excellent, experienced surgeon can make a huge difference in both your surgical outcome and recovery.
Recovery Can Be Painful
Although it’s called “minimally invasive” surgery, that doesn’t mean it’s painless. The pain during recovery from my first surgery was beyond even the worst period cramps I’ve ever had.
I’ve now had three laparoscopic surgeries for endometriosis. The recovery has gotten easier with each one.
I believe the experience of the surgeon affects the recovery, but so do my expectations. With each additional surgery, I’ve been better prepared for the recovery process.
Constipation can add to the pain during recovery. In my case, pain medications can cause constipation, so I’ve found that taking a mild laxative during recovery helps keep things moving and reduces the pain.
Be Prepared for Anything
I went into my first surgery expecting that they wouldn’t find anything. I had planned to be able to go home the same day. I’d also expected to be fully recovered in just a few days. I was so ill prepared for reality.
Nowadays, I go into any surgery expecting to stay overnight, even if the plan is to go home the same day. I expect pain even if I’m told there will be none. I’d rather expect the worst than to be unprepared.
Surgery Is Worth the Outcome
Despite having to go through this surgery repeatedly — because endometriosis is never really gone for good — I do believe that it’s worthwhile. The abdominal pain that sent me to the doctor is gone, and I no longer endure terrible cramps during my period.
I believe things get a bit easier with each additional surgery because with each surgery I learn more about what to expect and I’m better able to prepare.
I’ve discussed it with my specialist, and the next time I have this surgery, it will include a hysterectomy so that I can, hopefully, avoid having a recurrence of endometriosis. I know that that recovery from this surgery will be quite a bit different from those I’ve had in the past, but I will use what I’ve learned from those surgeries and research the experiences of others to help me plan and be as prepared as I possibly can.
Remember: Endometriosis is a chronic illness, and surgeries are often the only way to diagnose and effectively treat it. I hope these lessons I’ve learned can help you, too, should laparoscopic surgery become a part of your endometriosis treatment journey.