In March of last year, I had laparoscopic surgery to remove ovarian cysts and endometriotic tissue. Now it's all back, and it brought friends. Sigh. I have cysts on both ovaries, fibroids all over the place, two possibly scarred-over, fluid-filled fallopian tubes (hydrosalpinx), and probably endometriosis scattered all around my pelvis. I also may have a bit of adenomyosis, which is when endometrial cells invade the muscle layer of your uterus. Adenomyosis can cause severe, knife-like pain and cramping with your period; irregular and extremely heavy bleeding; and cramping throughout the month (not just during your period).
Now I have to figure out what to do about it. More surgery? But what kind? My fallopian tubes will probably need to come out. Do we cut out the fibroids and cysts as well? And if we're going in there, shouldn't we scoop out the endometriosis? But then what - how do I keep this from being a constant plague? Hysterectomy? Uterine surgery (called resection) to remove the adenomyosis? Removal of my ovaries (which will cause menopause)? Use of the Mirena IUD? Standard care for endometriosis is to use birth control pills - this regulates hormone fluctuations and imbalances that contribute to endometriosis and fibroids. But as a Sjogren's patient with positive anticardiolipin antibody, hormones aren't a good idea for me - they increase my already higher-than-average risk of blood clots. Another temporary option is the use of Lupron and similar drugs that tell your ovaries to stop doing their thing -- these drugs are essentially "instant menopause". But these drugs can worsen depression, which I am already very prone to. So that's out as well.
Ick. It really stinks to know that most of the medical options for treating this condition aren't a good idea for me. But I am appalled at the idea of removing organs. And I am equally afraid that if I don't, this will all keep coming back. I am also afraid that even if I do remove ovaries, tubes, uterus, etc. the endometriosis will still come back (it's happened to other women before). And I am also afraid that if I do have major surgery, the pain of endo/adenomyosis will continue. That has also been known to happen - the scarring and damage done to your pelvic organs and tissues can be severe enough to create a lingering pain problem, even after hysterectomy.
What an epic mess. As I work through this, I will try and post more. I have been neglecting this blog because life has been overwhelming - major changes at my job (requiring more work, longer hours, and more stress), some marital issues (although I can now say that couples counseling is well worth it), an ER visit in May for excessive menstrual bleeding, appealing the insurance company's refusal to pay for the ER visit, and now this endometriosis odyssey (what do I do? How fast? Who do I talk to?).
If you want to learn more about my conditions, try these links:
Adenomyosis, from the Mayo Clinic website: http://www.mayoclinic.com/health/Adenomyosis/DS00636
Endometriosis, from the Mayo Clinic website: http://www.mayoclinic.com/health/endometriosis/DS00289
"The stages of endometriosis," from the EndoChick blog: http://endochick.wordpress.com/2009/03/03/the-stages-of-endometriosis/
[From what I've read, if I have scarred-over/stopped-up fallopian tubes, then I have either stage 3 or stage 4 endometriosis. Always the overachiever!]