Three years ago this week, I had a hysterectomy as part of a surgery to remove stage IV endometriosis that had taken over my body. The endo was so bad, my uterus, ovaries, and bowel were all adhered together in one large mass. My surgeon removed a large number of endo adhesions, cysts, and fibroids as well as removing my uterus, tubes, cervix, and one ovary.
It was unreal how even the immediate post-surgical pain was noticeably less than what my pain levels were beforehand. There's no cure for endometriosis, but the hysterectomy at least meant I would no longer have periods that caused me to black out from pain.
That alone was a huge bump to my quality of life. Unfortunately, endo is a relentless disease and within nine months of surgery, I started experiencing that well-known pain again.
I ignored it for as long as I could, not wanting to admit that it was back already, not wanting to go back to the non-stop appointments and scans, where my body belonged to the medical system.
Subconsciously, it was like if I didn't say it out loud, if I didn't seek treatment, it meant it wasn't real. I played wilful ignorance for nearly a year, but of course, while I was ignoring the endo, it was busy spreading.
The thing about endometriosis is, the only way to fully identify how bad it is, is to have surgery. Ultrasounds and MRIs can give an idea of what's going on, but surgery is the only way to medically dx it with certainty.
Surgeons can remove the adhesions, but that causes scar tissue and unfortunately, the more scare tissue you have, the more endo grows back. Even the most skilled surgeons can't remove every cell of endo in a patient.
How long it takes to come back varies by person, so I guess I just drew the short straw with only getting nine months of relief.
Luckily, there are some ways to manage the pain. I've been doing a chemical menopause treatment for about 18 months now. I get a monthly implant that stops my one ovary from producing hormones (which can make endo worse). And it's been LIFE CHANGING, to say the least.
This treatment has been SO effective on the pain, I mostly forget that I have endo at all. I rarely feel the pain, usually it's in the week leading up to my next injection when my implant is wearing off -- I feel it and the pain stops me in my tracks.
Lately, that pain comes earlier and earlier each month, and every month, the pain is worsening. I am terrified about what this all means. Usually, the treatment I'm on is only used for 6-9 months at a time. I'm already at 18 months, which I am grateful for. But even this isn't a long-term solution.
I'm so scared. I'm so scared of going back to the life I had before surgery. The life where I was in debilitating pain every day, the life where I was bed bound for weeks and months at a time, the life where my body belonged to the medical system, the life where I was always being poked, prodded, and scanned. The life where I made such regular visits to the emergency department, we had to keep a hospital go-bag at the ready.
I don't know what comes next. I don't see my gynae again until April and I desperately hope she says I can keep doing this treatment, because at least it manages the pain 80% of the time. But if I can't, if the long-term risks are too high and I have to come off this treatment, I don't know what I'm going to do.
I guess I'm posting about this to not only get this off my chest, but also so other people with endo might see it and know that you're not alone. This disease destroys lives and is a constant battle, but you're never alone. I see you. I'm so proud of you. All we can do is keep fighting. <3
