Stage 4 endo and IVF
Hello Endo sisters
I am in need of some serious love and guidance.
I, like all of you, have had quite the battle. I wasn’t diagnosed with Stage 4 endometriosis until I was 36, due to the incompetence of about a dozen doctors I had seen over a 4 year span. I had surgery in 2018 to remove giant endometriomas from each of my ovaries. It was my first and only surgery ever, and I had a very hard time with recovery.
About a year later, I became pregnant naturally but had a chemical pregnancy. I had just gotten married 6 months after my surgery, and wanted to give myself a little taste of life pain free, so finding I was pregnant was quite the surprise.
Enter the pandemic.. where I refused to start trying for a baby with so much uncertainty.
Being spit out of the other side of the pandemic, I turned to Mercier therapy as I had heard really a amazing things about it. It has 1000% helped with my pain levels but no baby naturally.
I was about to begin IUI, when another incompetent “fertility specialist” sent me for an MRI…after the fact, because of inconclusive ultrasounds.this was weeks before I was supposed to do Iui.
The MRI Showed I was LOADED with endo: endometriomas, adenomyois,
Fluid in my left tube. A complete disaster. A test that should have been done from the beginning, right?
I ditched that doctor, and a friend who went through IVF led me to find my doctor of destiny, who has gone above and beyond for me without even a thought..Crazy, right?
She is proposing the following:
A round of egg retrieval. she has explained that my DOA and age are both factors in not getting enough eggs to test. Depending on how that goes, she would freeze the embryos. I would then need to undergo surgery on my blocked tube and any other endo that can be removed. After that would be the embryo transfer.
While this all sounds like a dazzling plan…WTF?!?!?!!!
I’m finding myself paralyzed in fear.
I suffer from chronic depression, anxiety, and panic disorder, both from living with endo .
My body is so tired. My mind is the same.
What bothers be is my new doctor saying “ if you came to me 5 years ago I think I could have done much more for you.” I get what she’s saying, but I certainly didn’t choose to wait until I was 40 to have a baby. This was the hand I was dealt. I guess I’m having a hard time with knowing when enough is enough. Do I throw in the towel and just worry about my own health both physical and mental, or do I give this whole thing a shot? My motherhood pangs wax and wane from day to day. I just can’t make a clear decision.
I am so lost.
Any advice would be so appreciated
firstly, I am so sorry to read of this difficult journey you have been on and everything you are dealing with. Living with endometriosis is no joke. Yet so many doctors I feel like, treat it as a joke. The countless years of not getting proper diagnoses or treatments, it's exhausting and angering. I am glad your friend did seem to lead you down a helpful path with a good doctor though. That is definitely a great start.
I will say this one thing, during my first surgery, they did find one of my tubes to be blocked. The doctor who did surgery did not feel comfortable cleaning it, so he left it!! It wasn't until two years later when I had another surgery, that doctor was able to clean it out and make it "good as new" again as he put it. Of course, I have not yet tried to become pregnant- so I don't have any experience or advice in that boat. But the surgery was well worth it to clean my tube out!
However, I do understand the being exhausted, both your mind and body and just not knowing what's worth it or what path to take next. I am in that same boat but for my GI issues. I think the best advice I can give you is; you need to follow your heart. I know, what advice right? But only you can end up making that final decision on what you want to do. What helps me when I am in this position is making a pros and cons list. And yah, it may not give me the answer right away, but it helps to see all the positives and negatives leading up to my decision. I know you are tired and fed up, but if this is something you truly want, that may be your answer right there. The right answer will come to you when you are ready to make <3 Also, I know so many others in this community are probably in a similar boat, so hopefully they do share their experiences too.
Just know, either way, we are here for you always. Please reach out whenever you need <3 Hugging you and sending you calming, comforting thoughts during this time. -Kimberli (team member),
thank you so much for this.
I have many wonderful friends, some of whom I have known for decades, and I can't even touch on this with them. They just DON'T get it. It feels good to have a community here who does.
I have been thinking over the last few days, and I've reached a moment of clarity where I feel like excision surgery is my best option at this point.
If I do IVF, I will need to have a series of surgeries...polyp removal, tubal removal or clearing, all at separate times. I was able to get a consultation with Dr. Seckin's office in New York City. He is one of the best surgeons in the world and Amy Schumer actually had her surgery with him.
My first and only surgery was a laparoscopy in 2018..and it was like being in a nightmare. It was almost 5 hours, and the surgeon only removed endometriomas from my ovaries and didn't touch anything else. I have major PTSD from it, so surgery is a big scary thing for me.... I'm hoping if I proceed with the excision I'll have a different experience.
I think the pressure comes from knowing I'm now 40, with a disease that is attacking my ovaries, and I'm running out of time... at least that's what my RE is telling me.
It's alot of grieving and processing some really really hard stuff.
