Managing Endometriosis Symptoms for Almost 30 Years
I turned 40 this year, and my period started when I was 12. Like a lot of warriors, my symptoms were rough from the beginning. You might wonder what it's like to live with endo for that long. It's pretty exhausting. But over the years, it's gotten easier to manage. Even if some of things, including better treatment options, haven't improved.
Here's more about my journey.
Surgery helped with certain symptoms
I've had three laparoscopies. The first two were ablation, meaning they burned off endo lesions. I had one when I was 24 and another at 29, when I also had a dilation and curettage (D&C). I had my third surgery — my first excision — when I was 39.
None of these surgeries did anything to ease my period pain. At all. But some helped with other symptoms. Here's more about each one:
- Surgery #1: The surgeon drained an endometrioma, burned off endometriosis lesions, and cut out a huge chunk of scar tissue (adhesion) near my appendix. This surgery didn't help with general pain. But I physically couldn't have penetrative sex before he removed the scar tissue. My lower right side issues — I've always had the most pain there— persisted.
- Surgery #2: This surgery actually made my pelvic pain worse, and I got bacterial vaginosis from the D&C and "wash" they did. The surgeon drained my recurrent endometrioma and burned off some more endo lesions. She didn't tell me where she found them or if she removed any scar tissue. My drained cyst (or cysts, I'm not sure) came back 3 months later, even while I was on hormonal birth control.
- Surgery #3: I only had a third surgery because it was with an excision specialist. I didn't have any endometriomas this time, but he did excise endo lesions and removed scar tissue from several places, including along my abdominal wall on the right side. I can now run without cramping and sex is much less painful — sometimes it doesn't hurt at all. I also get nauseated a lot less and have less leg pain and numbness. This was by far my most helpful surgery.
Certain diet changes helped more than others
I went vegan when I was 20. That means I ate no dairy, meat, or any other animal products. While this essentially cured my chronic diarrhea — I was clearly lactose intolerant — it didn't do anything to help with general or period pain.
Here's more on my diet changes:
- The low-FODMAP diet made a huge difference. I adopted this eating plan when I was 35 with the help of a dietitian. It helps lessen bloating and distention, which eases my endo belly and other abdominal pain. And my joint pain is much better when I eat gluten-free (which this diet is, mostly).
- Alcohol and caffeine don't worsen my symptoms. I didn't drink coffee or booze until I was halfway through college. And my symptoms didn't change when I added them to my diet. I also didn't notice a difference when I quit drinking alcohol 4 years ago.
- Avoiding ultra-processed food and added sugars is key. I really do feel a lot better — except on my period — when I follow an anti-inflammatory diet. I try to eat plant-based whole foods as much as I can. That means I cook a lot from scratch. Tofu, tempeh, vegetables, berries, and old-fashioned gluten-free oats are mainstays of my meals. And I love natural peanut butter, the kind you have to stir that doesn't come with added sugar.
No treatment has cured my period pain
I've tried at least 7 kinds of hormonal birth control, but I haven't been on it for more than a decade. None eased my aches or stopped my menstrual cycle. Some made my bleeding and pain last for months — I'm looking at you progestin-only pill.
Several OB/GYNs have told me I likely have adenomyosis. But I'm not ready to get a hysterectomy, which is the only "cure". So each month my lower abdomen swells and aches for at least a few days before my period, sometimes longer. The day my period starts is the worst. And then I'll have pretty heavy bleeding and cramping the first couple of days. Sometimes I get a migraine.
Unfortunately, diet changes and surgeries haven't helped me with my period/adeno pain. That's a bummer. But there are some things that do help, including:
- Migraine meds: I have a prescription for a class of drugs called triptans. I don't leave home without them. They are the only thing that'll get rid of my worst head pain. They also treat other symptoms that come with an attack, such as nausea.
- Ibuprofen: This is a non-steroidal anti-inflammatory drugs (NSAID). My doctor advised me to take ibuprofen the days leading up to and during my period. This takes the edge off my worst pain, which helps me function when my bleeding starts. Otherwise, I'd be bedridden.
My current doctor is willing to prescribe prescription painkillers for my period. But drugs like opioids can actually make pain worse in the long term, and they lose their effectiveness over time. I think it's important that people with endo have access to strong painkillers when necessary, but opioids aren't a good way to ease chronic pain.
My life with endo did get better
My nausea, sex pain, bladder trouble, and joint issues have improved from my 20s. Though, some things are just as bad, or worse, as they've always been – migraines, period pain, lower back aches. But compared to my 12-year-old self, I have a lot more tools to cope.
While there's no cure for endo, I know what to expect each month. That makes life a little easier. And I never stopped looking for treatment when my symptoms got worse, even when a doctor told me I should.
If you've just been diagnosed with endo, or you've had it for a long time, you're not alone. And know there's help. Always keep searching for it. In the meantime, here are some more things that've helped me during the past three decades:
- Pelvic floor therapy
- Mindfulness meditation
- Visceral manipulation
- Antidepressants for PMDD and nerve pain
Want more tips? Just ask!
The holiday season is among us and can be so stressful! Do you experience more flares during this season?