- Wedding: August 2013 - backyard in the woods
In short, yes it can effect your fertility and yes it can reoccur after surgery, sometimes agressively. There are knowledgeable doctors out there, you just need to search a little to find them. I would suggest that you find a doctor who specializes in Endometrosis.
I complained of severe pain for about a decade before I finally wasn’t able to walk due to the pain. My primary doctor finally sent me to see a OBGYN who diagnosed me with Stage 1/2 Endo during a lap where he removed ‘what he could’ and told me that the rest wasn’t operable (near my bowel) and wouldn’t be a problem since there was so little there. He was an idiot who had no surgical skill and didn’t want to send me to someone who did. He put me on continuous birth control to reduce it’s reoccurance. I was on it for a few months before my husband and I started TTC.
As soon as I came off of BC my pain began getting worse each month. I was pretty sure it was my Endo coming back. After a year of unsuccessful TTC I found myself a new doctor who specializes in Endo. He did a lap right away and I found out that in less than a year my Endo had grown to Stage 4, it was everywhere: ovaries, tubes, uterus, bowel, bladder, both ureters and both kidneys. It was so bad that he couldn’t remove it all during one surgery. I went of Zoladex for 7 months to shrink it while I healed from that lap and had another lap afterwards where he removed the rest.
I’m so glad that I found an Endo specialist. Most doctors don’t know Endo, you are correct, but those that do can be great. I could have lost both of my kidneys if I had assumed my first doctor was correct and not had another lap (both of my ureters, the tubes between kidney and bladder, were fully encased in Endo and could have been squeezed shut by the Endo eventually, killing my kidneys- this is super uncommon btw, I’m just super lucky lol). Unfortunately we’ve now found that we have male factor fertility issues as well, so our lack of success is likely from both of us. If you have any specific questions on Endo feel free to ask. I’ve done a lot of research in the 2 years since we began TTC:)
Some things I’ve learned since finding a specialist:
If you don’t remove ALL of the Endo, it can grow back. Cutting out the Endo (excision) is better than burning it out (ablation) becuase when you burn it out you leave little ‘roots’ of Endo that have the potential to regrow. this has not been scientifically proven but most Endo specilists agree. There is no scientific evidence that multiple laps helps increase fertiltiy, only the first one does, they don’t know why. Multiple laps should be for pain/health reasons only.
These are some of the most informative and valid links I’ve found on Endo and infertility.