The Wrong Decision

charlie-brown-1093048_1920This past Tuesday I finally met with the gynecological oncologist that I was referred to to treat my endometriosis. I had to travel over 100 miles away to see him. And…to my dismay, he didn’t have any particular recommendation as to how to treat this. He just told me what my options are and said I don’t have to decide anything yet. He kept saying that my gynecologist may be right and everything might need to come out, but with surgery comes its own risks and I could wind up in more pain from more scar tissue forming. He did want to send me for genetic testing to see if I have the mutation that causes breast and ovarian cancer, because that could change his recommendation, but as of right now he wouldn’t recommend any one treatment over the other. Which is incredibly frustrating, as I thought I was being sent to him specifically to have surgery, and he didn’t seem overly concerned with removing anything.

My sister went to my appointment with me, so I asked her what she would do if she were in my shoes, and she said she would try treating it with birth control. So, foolishly I said that was what I would do, despite knowing that I can’t tolerate birth control. As soon as we left my appointment, I felt unsettled by my decision. So many people have been drilling into my head not to have surgery unless he said it’s absolutely necessary that I feel like I made my decision based on what THEY want, not what want.  If nothing else, I want to have my fallopian tubes taken out so I don’t have to worry about ectopic pregnancies. But of course by the time I  thought to speak up about it, we were already on our way home.

Once I was home, I decided to look up the Pill the specialist prescribed, and again to my dismay I discovered that it’s not even something I can take, as I have two pre-existing conditions that it can’t be taken with (severe migraines and circulation problems.) I’m a bit ticked off that I was prescribed this particular medication despite the fact the doctor was aware I have these conditions. It’s also risky to take this medication if you’re overweight, as it can cause you to have a heart attack. Not to  mention the typical risk of blood clots and stroke. These are things I’m just  not willing to risk, so I’m not even going to bother getting the prescription filled.

I’m still a little iffy on whether I want to have a hysterectomy or not, but I plan to schedule another appointment with this doctor about a month from now to tell him I changed my  mind on how I want to proceed. I can’t live in fear of an ectopic pregnancy, and as he said, having blocked tubes is like driving without a seat belt as far as risk factors go. I know now that I don’t ever want to get pregnant. For the last two months I have been grieving “what could have been,” even though “what could have been” isn’t what I even wanted. I have come to terms with the fact that I will never have biological children, and as of now I am okay with that. And I would be completely fine not having a uterus; my main concern is the surgery itself and the recovery afterwards, as well as the risks that go along with it.

I wish I could go back and speak to the specialist ASAP, but unfortunately I’m scheduled to have a femoral hernia repair surgery this coming Thursday, so I will be down recovering from that for a bit. But as soon as I get the “all clear” from my surgeon to travel, I’m going to see the gynecological oncologist and tell him my decision. He did say that I could always change my mind, and that if I needed to see him before my follow up in 6 months to give him a call.

Anyway, that’s where things currently stand. Hopefully he’ll be able to schedule me for surgery sometime in the near future so I can get this issue taken care of once and for all and put it behind me so I can start healing. I am tired of being in pain, and I am tired of being afraid.

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Mother’s Day

Today was a surprisingly good day. My stepdaughter texted me wishing me a Happy Mother’s Day and told me she loves me. We had a nice little chat and I am reminded how lucky I am to have such a sweet girl in my life. She may not be biologically mine, and I may not have the closest relationship with her as she lives in another state, but I love her very much and I am glad I get to be part of her life. Hopefully her dad and I will be able to visit her sometime this summer.

I am coming to terms with the fact that I can’t have biological kids, and slowly am becoming used to this knowledge. Some days I’m even OK with it. Of course, sometimes grief will hit me like a rock over the head, but those days are coming fewer and further between.

I’ve finally got an appointment to meet with the gynecological oncologist, and I’ve got my transportation worked out. I will be meeting with him on May 23, so a little over a week from now. I will know more about what’s what then, and will hopefully have a plan in place for how to treat my endometriosis. Maybe it will mean a complete hysterectomy, maybe it’ll mean an oophorectomy, maybe it won’t. I do know already that my fallopian tubes need to come out and I will have to have surgery to unstick everything and remove the endo implants. While I’m dreading another surgery, I am looking forward to getting it over and done with and hopefully putting this chapter of my life behind me.

Trying to Look at the Positives

Earlier I was surprised to find out that I was being referred to a specialist in Berkeley, California, which is about 3 hours away from where I live in NorCal. Getting to my appointments — and down there for surgery — will be a challenge, as I don’t own a vehicle and my boyfriend’s car is old and in bad shape and won’t be able to handle the trip.

On the plus side, I looked up the name of the specialist I will be seeing and he has some decent reviews. Some not-so-good ones too, but those seemed to be from patients angry at the suggestion of a hysterectomy to cure their cancer or whatever health issues they were having. I’m not going to judge a doctor based on the review of someone who’s angry at the news that they need a hysterectomy. The rest of the reviews I found were promising.

So, at least it appears that I should be in good hands. Now to figure out a way to get to my appointments!

…And Another Rock

I got a call from my gynecologist’s referral nurse a while ago. My referral finally got authorized. But like everything in my life, it can’t be simple or easy.

Because there’s no one in my area — or any of the surrounding areas, for like, a 100 mile radius — affiliated with the network that took over for my insurance in February, I am being sent to a specialist in the Bay Area. Which is a 3 hour drive away. My insurance’s transportation services don’t even travel that far. Well, they might, but they need “verification” first, whatever that means.

I don’t have an appointment yet, but I also don’t know how the hell I’m going to get to the Bay Area — multiple times — to see this specialist. It’s not like they’re going to just send me to this guy for surgery without a consultation or pre-op appointment first. Plus there will be post-op to figure out. I don’t drive (at least I don’t own a car) and my boyfriend’s car is old and won’t be able to handle one trip, let alone multiple trips. I’ve learned over the years that it’s a lot to ask people — even family members — to take you to doctor appointments, and one this far away is simply too much to ask. So I don’t know what I’m going to do.

This also means my treatment choices will be limited. I simply won’t be able to travel back and forth to the Bay Area for hormone suppressant shots once a month, or once every three months, or what have you. So I’m probably going to have to just have them take everything out.

What’s most frustrating is knowing that there are specialists nearby (or at least closer by than the one I’m being sent to) who accept my insurance, but because they aren’t affiliated with the network I belong to, I can’t see them. Instead I have to figure out a way to make repeated trips over 100 miles away to get this issue sorted. Since endometriosis is such a common disease among women, it’s shocking that there’s no one in my area who treats it. It’s a load of B.S. to be sent to an entirely different part of the state for treatment.

But, there you have it. This is how everything in my life always goes. There can never be an easy or simple solution. Of course, things wouldn’t be as complicated if I had a car, or at least my boyfriend had a car capable of making the trip. But, it is what it is. I suppose it’ll get sorted out. Somehow.