The Next Chapter

Hi guys! I’ve been meaning to post for the last… erm… ten months…. but life got away from me. I even began working on a whole new blog to transition this one to, but haven’t quite gotten around to finishing it. Given my blogging history, it will probably languish in Unpublished Land indefinitely.

Many of you know that after infertility, I found myself in the childless-not-by-choice community. I’ve been hanging out in that world for the last couple of years, building new friendships and slowly adjusting to the likely permanency of my reproductive reality. During this time, I’ve continued my endless quest to find an endo specialist and have seen numerous doctors, all resulting in disappointment.

My endometriosis is still really bad. Severe stage 4— lots of pain, tons of ongoing symptoms, blah blah blah. Sometime in early 2021 I decided that enough is enough: I am weary of living with constant pain and missing out on countless events because of endo issues. And even though I know it’s not a cure (please, no lectures), I began seriously considering hysterectomy.

Docs have pushing me for more than a decade to have a hysterectomy, but I always adamantly refused. Instead, I tried anything and everything, prescription and natural, psychological and physical, to heal/improve my endo and increase my odds of conception. And you know what? None of it worked. It was like spitting in the ocean. After a very long road, I’ve accepted things and, frankly, I am desperate for my painful reproductive organs to be OUT of my body, once and for all.

The first step in my journey to hysterectomy led me to New York City to meet with the renowned (or should I say infamous?) Dr. Seckin. Dr. Seckin has been on my radar for a very long time, but financial and insurance reasons kept me from making a move. I finally took the plunge, and Jake and I took a day trip on a sunny spring day in March of this year to meet with him.

After a long and somewhat thorough consult, Dr. Seckin diagnosed me with a partially frozen pelvis, in addition to severe stage 4 endo. I had a fancy pelvic MRI done while I was in the city which showed adhesions everywhere in my pelvic area and numerous chocolate cysts and other cysts. Dr. Seckin agreed that excision surgery plus a complete hysterectomy was in order; I was relieved and anxious to move forward.

Just when I was ready to schedule surgery, Dr. Seckin’s office slipped me the news that it would cost me $15,000, not covered by insurance. I’d already spent more than a grand out of pocket. Where would I find $15k?? I considered every possibility before reluctantly (and I should add resentfully) deciding to scrap Dr. Seckin. It was a tough decision, and I went through several dark weeks of hopelessness and disappointment while wrestling through it.

I definitely would NOT recommend Dr. Seckin to anyone unless you’re loaded with cash and prepared to make lots of trips to NYC. I felt cheated by him. I believe he preys upon desperate women like me in order to line his pockets. The entire experience was very upsetting and I wouldn’t want anyone else to go through this same thing.

My journey’s next step(s) was a whirlwind series of appointments with four more doctors (!), each of which was a letdown. Finally last month, out of desperation and realizing that my quest for the perfect doc would never end, I returned to one of those four docs to go ahead with surgery. Next week I have a second consult with my new doctor (Dr. New, keep it simple), as well as with a colo-rectal surgeon because I always have a colo-rectal guy on hand for my long and complicated surgeries.

I’m hoping to schedule my hysterectomy for November/December. It will involve surgical removal of my remaining ovary and Fallopian tube, uterus, and cervix, as well as excision of all endometriosis. Because my bowel is involved, I’ll likely spend a night or two in the hospital.

I cannot WAIT to have my hysterectomy! The prospect of relief from pain is like a carrot dangling on a stick. And even if my endo and/or adhesions return, I won’t have a uterus throbbing away and an ovary that feels like it’s being smashed by a hammer repeatedly, or a super-friable cervix to bleed every time Jake and I do the deed. Possible adhesion pain I can deal with (I hope). Imagining a life pain-free of endometriosis is unimaginable. Being able to perform everyday activities unimpeded from pain and/or excessive bleeding is something I haven’t experienced since my first period at age twelve.

Of course, a full hysterectomy means permanency of childlessness and instant menopause. I’ve been struggling through those issues the past several months, and I believe God has given me peace to move forward.

I’ve thought and researched carefully over every possibility that comes with hysterectomy, but having the surgery— vs. having yet another endo excision surgery that inevitably fails to improve my quality of life— is the right decision. I’m almost forty years old; Jake and I have been married for eighteen years and are established in our life; being pregnant and bringing a baby into our lives at this stage isn’t something we’re into anymore. That season of life has passed.

That said, Jake and I have had a huge change in our life recently (nothing bad) which I’ll save for another post. And this time, I WILL actually post something and not wait months and months to publish it.

Peace.

Author: Marixsa

Resolving infertility as childless-not-by-choice and encouraging fellow endo warriors along the way.

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