Endo, Take 2

After my first lap surgery for Endo (click here if you haven't read about it already, as I'll reference the leadup here), I got 4 years with minimal issues. Around that 4th year, I began to get frequent UTIs (or so I thought), and sex was becoming something I feared because I would have a flare-up after, no matter how much we cleaned before and after. I went to a urologist who was very dismissive, but did recommend taking D-Mannose, which could ease the symptoms of frequency and urgency, which made it feel like a UTI, even though both at-home tests and lab testing came back positive for leukocytes and negative for nitrites. They scoped me and found that I did have a hypertonic pelvic floor, but didn't find any Hunner's lesions, which was the point at which this particular doctor dismissed my research (yep, back to Dr. Google) about me possibly having Interstitial Cystitis. Interstitial Cystitis (IC), also known as Painful Bladder Syndrome, is "characterized by chronic pelvic pain and discomfort, along with frequent and urgent urination, often in small amounts. Other symptoms can include pain during intercourse and in the lower abdomen or pelvic area". So, surely, you can see why it piqued my curiosity. I changed to a urogynecologist who was very understanding and helpful. She prescribed me some suppositories for the issue, which made the after-sex fear dissipate somewhat. I started an IC-friendly diet by limiting acidic foods and taking Prelief if I thought something I was about to eat might be acidic. I added so many supplements in the name of controlling inflammation (aloe, turmeric, NAC, etc.), I got a grounding sheet and castor oil packs, a travel heating pad, THC/CBD creams.... You name it, I probably have it.  And, most importantly, I started seeing a pelvic floor physical therapist to help with urgency and frequency; I was getting up sometimes 3-4x a night, and each day averaged about 15 trips to the bathroom (the average is 10x a day for women). Things were better for a while, but then the familiar pain in my flanks began again. 

I didn't have a specialist here so I went to my regular gyno and they suggested a Mirena to help with symptoms, but I was resistant because I believed at the time that maybe the reason why my UTI strips kept on showing leukocytes and not nitrites and often "mixed flora", was because I had some sort of bacterial issue and read of women in that situation where an IUD made things dangerously worse.  I continued just living life until it got to be that nothing was helping the pain in my side, my back, my hips, my inner thighs, my ovaries, and I'd have crazy (not the fun kind) spasms just even thinking about sex, and I'd crawl into a ball and cry. Obviously, this was terrible for my marriage. I began to see a therapist as well as going to various doctors' appointments, sometimes 3 a week, trying to get help. At one point, I had been in Mexico and came back and had terrible diarrhea for 10 days after already being home for about a week! Of course I figured it was a parasite, but I went through all the disgusting testing and it wasn't. I had eaten something a bit spicy after fasting, and whatever was going on in my body didn't like it; I was very ill for 3 days, and running to the toilet for a full 10. 

In late April, I finally got in to see a specialist that I was referred to through my gyno. I felt comfortable with Dr. Nezhat because I was able to research his practice and read successful patient recs through Nancy's Nook  (one of the Endo support groups I'm in). He recommended removal of the Fallopian tubes, which hit me hard at first, but it was the right move to decrease the risk of Ovarian cancer.  As I said last time, I know this doesn't mean I won't have a family, but it still stung to consider.

One Week Post Op....

I am one week post-op from my second Endo excision surgery. I'm pretty mobile, still experiencing some pain, but I guess that's to be expected since surgery is trauma to the body after all. I received my pathology report. I was told when I woke up from the anesthesia that I had Endo on my appendix as well as a polyp, both of which were removed. I was also told that it was in the vagina and on my bowels but that my bladder, while it had scarring, did not have any new adhesions; 11 places in my body did though... multiple. The most notable ones from the pathology were the rectal and urethral sacral ligament adhesions, which probably account for the 10 days of 💩and some of the lower back pain! I'm still a few weeks from being better, but I truly hope to get a bunch of good years this time. Here's hoping!