- Wedding: August 2013 - backyard in the woods
I’l join you. Let’s make some kind of format for anyone new joining, like the charters or TTC 6+ months, 1+year groups, to keep it organized.
AGE: Me-32, DH-38
AGE at diagnosis, and how were you diagnosed: Diagnosed at 30 when my pain became so severe I couldn’t walk. My primary care doc, who had been ignoring my complaints for a decade finally referred me to a OBGYN who immediately suspected Endo. I had a lap to diagnose and remove Endo in Jan 2013. I shouldn’t have had it since I had been on hormonal BC for over a decade, but I did (yea!)
Stage of Endo: 1/2
Symptoms: Severe AF pain, severe bowel/bladder pain during and just before AF, general digestive issues and hypoglycemia, migraines, pain during intercourse sometimes, exhaustion.
How long TTC: Going on 11 cycles TTC#1
Things you have found that helped: I used to spot from up to 3-4 days before AF and have huge amounts of clotting. I take low dose baby asprin once daily and I find it helps immensely. No more spotting and it’s decreased my AF pain dramatically.
I also ovulate regularly. I have read that clomid is bad for Endo as it’s a phytoestrogen- the Endo feeds off of it and it can make it worse. How was your experience with it LAZB:? I’m hesitant to take it since my Endo seems agressive. Femara doesn’t work the same way and is said to be fine for Endo, which is what I was thinking of taking if a doc suggests Clomid.
bearsreddy: Though technically without a lap you can’t be diagnosed, I’d be confident if my scan showed that too. Sometimes you can also be confident in it if a scan shows organs that are pulled out of place, suggesting adhesions. Endo severity is detemined by a point system based on the size and palcement of lesions, adhesions and endometriomas. An endometriomia isn’t neccesarily Stage 4, but it’s often a sign a of more severe disase, Stage 3-4, as endometriomoas are by nature large and usually deep and therefore worth more points. Here’s two tables for example of how scoring works:
The recovery for a lap isn’t bad at all IMO. I was terrified for my first one, but it really wasn’t bad at all. The IV hurt worse than the surgery for me. I was up and around in a few days and fully better in a few weeks. I actually taught a biology field class in Costa Rica only a month afterwards! The only place I was really sore was where I had an adhesion attached to my abdominal wall that was removed, but that was more of a soreness, an ache, not acute pain. Maybe if you have a later stage where more is removed the recovery/pain may be worse.
I have another lap scheduled in about 2 weeks for pain relief/fertility. Since going of BC to TTC my pain has been getting worse every month. A few months ago I found a new specialist, this time one who specilzes in Endo, since I didn’t like my previous general specialist much. My new doc (whom I love) thinks that since my first lap was an ablation, the doctor left a good amount of Endo in me and it has reoccured since I stopped taking BC. I’ll be having the lap done robotically this time, with excision, not ablation, which is supposedly better at reducing reoccurence of Endo. The robot is much more precise and better at removing it.
Since I don’t have any physical obstructions my doc thinks my TTC issues are immune related- when your body tries to fight off the Endo it produces chemicals that can be toxic to sperm and interfere with implantation. The first 3-6 months after a lap have improved fertility because the body slows/stops production of these when the Endo is removed. Surgery is the only way to increase pregnancy chances for those of us with Endo as far as I know.