Tuesday, 19 July 2016

Long Conversations

So yesterday I had my phone consultation with Dr. Dulemba regarding laparoscopic surgery for my endometriosis. He's a funny character, and has a quirky sense of humor, but he is also incredibly knowledgeable and forthcoming with his opinions and what others may think of him. I found that refreshing, and makes me respect and trust him.

We had a long conversation about endo and about hormones and ways to go about "treating" it. I put quotations because really the only true treatment seems to be surgery, but there are certainly options to manage the disease as well. Nothing cures it.

So anyways, it was quite a scientific discussion, and a lot of information was thrown my direction. First thing he said to me was, do you have a way to record this? So I did... though I'm not sure I could go back and listen to it all over again, it was a long thorough talk. He asked me some questions to get a sense of how long I've been living with symptoms, how I've coped, and he discovered I am trying to conceive.

This is where I got a little nervous. He is not, nor does he claim to be, an infertility specialist. He understands that he knows very little about endo and its effect specifically on fertility, and instead referred me back to my doctor. Logically though, we talked through some of my concerns and it was nice to hear from someone who specializes in endo that my gut instincts about having surgery before another attempted cycle weren't out of left field. But my RE put some concerns in my head about doing more damage than good, and discouraged me with the facts that there is no evidence to support that surgery increased fertility rates.

I knew before going into this that a surgeon is going to recommend surgery, and an RE is going to recommend IVF and meds. It's a well known fact in the immunological support community... but that doesn't help in terms of coming to any kind of decision.

I guess where my head is at now, is that I've done 3 rounds of IVF with no success. Sure, an immune protocol COULD be my winning ticket, but what if its not. What if I go through a whole other round to be unsuccessful and have used up 2 excellent embryos. What a waste. Why not give myself the best shot possible. At this point, I really do believe it would do more good than harm. But I'm no expert.

Why does no Endo Fertility doctor exist? Ugh. Way too specialized I suppose. I know that Dr. Braverman and Dr. KK definitely take endo into consideration for their patients, but they're expensive and far. This journey is expensive enough as it is, and with us looking into adoption, I don't want to be completely out of money to explore other options if I need to.

Anyways, so I'm thinking surgery at the end of August. Homme InFertile and I talked about it briefly last night but my head was spinning and I was running around like a chicken with my head cut off (no literally, I burned myself even because I was so all over the place). I think tonight we'll discuss it further and I will call the clinic to get information regarding insurance coverage etc. My plan of action is surgery mid/late August, 3 months of lupron, and then a FET. But a little wishful side of me wonders if maybe, just maybe I could get pregnant naturally after surgery. I don't know if that's a pipe dream though, so more to think about.

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In case anyone is interested, here is my very scattered note-taking from the call. It may require some deciphering haha ;) but feel free to ask me about it.

Colonoscopy ***

Endo - Immune System Disease  

Commonly also have Interstitial cystitis

Women’s Health Initiative (WHI) - breast cancer and hormone outcomes (study)

Pelvic Floor Dysfunction - physical therapy (it is real, people do benefit, but it’s overused)

  • Do nothing
  • Pain management
  • Lupron
  • Mirena iud

Sometimes they put a barrier in… but this is foreign tissue (which in some cases can create more scar tissue)

they use amniotic tissue to try and avoid this (it’s slippery and ideal) but is very expensive (a very small piece is like 2k) - even then it’s not perfect

Stitch up the ovaries (ovarian suspension) for the primary healing period (about a week and a half)

Second look laparoscopy (surgery a week apart)

Pre-op visit (day before)
Surgery the next day

Wednesdays and Fridays for Surgery
15th-26th ish

Office manager - insurance - melinda

Amniotic tissue is NOT covered.

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