So, after 11 months of trying and no success, I underwent a laparoscopic surgery last Friday to take a look. I have never had any signs/symptoms of endo other than some really bad cramps, but my mother has it so my RE thought it would be important to rule it out. As it turns out, I have stage III endo. They removed what they could, and we meet again in two weeks to discuss "more aggressive" steps. I'm just wondering who else out there is dealing with this and any advice they might have?
Hi Erin. Sorry to hear they found endo during your surgery. I'm sure that was a shock since you didn't really have any symptoms.
I have stage 3 endo. As I understand it, once you are stage 3, it means you have adhesions. In my case, the adhesions damaged the ends of the tubes as well as adhered at least the left one to my bladder, which the surgeon couldn't totally release. The doctor pretty much suggested IVF from the beginning, although we are just now going forward with it.
I would definitely ask the doctor where the endo was/is, is it affecting the tubes, how does it cause infertility and what the success rates for you would likely be with different treatments.
My sister had laparoscopy (had stage 2 endo though), and got pg immediately after surgery, so I don't know if it would be worth a try naturally for you? I would ask the doctor that too.
Obviously, it is a totally personal decision for you, but I will say this, in case your doctor does suggest IVF given that the endo is stage 3. In retrospect, had I known that I would TTC almost a year out of surgery, have two early m/c's and still end up doing IVF, I would have probably done it from the beginning and saved myself a year of heartache and getting older. Not that there is any guarantee with IVF, either.
I hope that, if anything, having a diagnosis of what the problem is giving you a little peace. At least now you can move forward knowing what you're up against.
Good luck, keep us posted.
Thanks so much for the advice. It was a shock, and yet not a shock. At a year I knew something had to be going on, and so in some ways, at least we have the benefit of knowing what the issue is. I don't think he will recommend we continue to "try" on our own. I obviously didn't talk to him after the surgery (I was out) but my husband did and he told him at the follow up appointment he wants to discuss with us "more aggressive steps" moving forward. So, I suspect IUI and/or IVF. My internal debate now is if we even bother with IUI. From what I have read, with Stage III and IV endo, it's not that successful. And my insurance won't cover either, so I hate to spend money on something that won't work and then have to turn around and finance an IVF. So frustrating!! I really appreciate the input and wish you soooooo much luck on this cycle!!
Sorry to hear about your diagnosis. That said, don't lose hope.
I was diagnosed with Stage IV Endo in April 2006. I had gone in for a lap as I'd been having awful abdominal cramps and a scan had shown what they thought was a cyst. I am no longer confident on the terminology, but I think they said they thought it was a hemolytic cyst (?). It was the shock of my life when I went in for the post-op appointment and was told I had stage IV endometriosis. Thanks to adhesions my left tube, bladder and uterus were completely attached to one another. I also had some adhesions around my bowel. My left tube is completely blocked due to the damage. The surgeon burned what he could and told me to "start trying now if you ever want children as the longer you wait the less likely it is it will happen for you."
We started trying straight away (it hadn't been planned beforehand). I was extremely lucky in that the 'clean out' worked well for me. In August of the same year I found out I was pregnant. I now have a four year old son and a 2 year old daughter.
Keep positive. Speak to your doctor.
Good story Gemma. I really thought I would be one of those people who got pregnant after the laparoscopy. I actually had two children before I knew I had endo, and I'm certain I had it at the time I conceived my second (got pg after a fertility workup). But it really got bad, really fast after that. Started trying for #3 when #2 turned one and somehow in that short time (about 6 cycles total), it did SO much damage.
Endo is so unpredictable. Erin, hopefully your doctor can give you all the info you need. Good luck with your decision of what to do, it's not easy! Especially since you are paying out of pocket for any treatments.
It sounds like your story is similar to mine. I also had a lap when TTC#1 and they found endo (I don't know what stage) and I ended up getting pregnant 2 cycles later. We are now TTC#2 and I just had a second lap Dec. 5. I hope it works for both of us! Sorry about your endo diagnosis, however, at least you now know a "why"...KWIM? Hopefully you will get pregnant on your own like I did the first time. Don't give up!
Well, I have an update! I had my post operative appointment yesterday and discussed the findings with my RE and also got a copy of my operative report. Basically, the left ovary and "cul de sac" area were what was impacted. The left ovary had aherred to the pelvic wall and was covered in "filmy adhesions." The right side was basically clear and nothing had to be done. My RE removed it from the left side and was able to free the ovary from the wall. Post op now 2 weeks I am basically back to normal and feeling great--though I really never had any endo symptoms either beyond infertility.
We discussed with the RE "the next steps." He actually suggested we try on our own the next 2-3 months (well, 1-2 if you count this month) because he was able to clear the area so well. Stated if we don't get the BFP by March or so we should try 2-3 IUI's with COH (but no injectibles, which will keep the cost way down.). If this fails, then we go to IVF.
I asked if he really felt this was the best plan due to everything I have read about Stage 3 endo and IUI. He said yes--he really feels that freeing up the ovary and being able to clear the endo out will significantly help us. Even if we try 3 IUI's it will only cost us around $1100 (we are OOP) so it's hard not to at least try. Of course I am impatient, want a baby now, and think IVF is probably our best shot, but I am trying to take the advice of a doctor who's only goal is getting me knocked up! So, that's where we are. I'm going to be very cautiously optimistic moving forward.
Well that sounds like a good plan. Take advantage of the first few months after the laparoscopy and not wait too long to be aggressive! You are so lucky you have one side unaffected.....and that he was able to free the left side. 1100$ doesn't sound too bad, and that is for 3 tries? Hope you don't even have to spend that......good luck! Keep us updated!