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.

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.

 

Things Could Be Worse

ice-sculptures-1934577_1920The human body is designed to fail. We can try to avoid it all we want, but it’s inevitable. We all die someday. Some sooner than others. I know this is a morbid thought, but I’ve been reflecting on my situation and keep wondering why did this happen to me? Well, why does anything happen to anyone? Why do little kids get cancer? Why are babies born with brain damage? Why do people get diseases? Is it really some form of ‘punishment,’ or just nature doing what it does — breaking down our bodies because someday, we all must die?

In this regard, I am very lucky. I have had several cancer scares but have never had cancer. I have a benign condition that can cause complications with other organs if not treated properly, but I haven’t been given a death sentence, or a slim chance for survival. I saw a video recently of a teenage girl who was shaving her head after having a relapse with ovarian cancer. She was first diagnosed at 14 and she didn’t want to feel like cancer and chemo stole her hair from her, so she shaved it before it could fall out because that was the one thing she could control. That kind of put my own situation in perspective. It sucks that the universe served that girl a heaping pile of crap and at such a young age. But her attitude seems much more positive than mine and I sincerely hope that she beats the odds and lives a long, happy life.

When it comes down to it, my situation could be far, far worse. I am grateful it’s not. But that doesn’t mean that I can’t  be angry or grieve for what I am losing. I feel the way I feel and there’s no shame in that. I need to experience these feelings because if I shut them down, they’ll likely resurface later and be much harder to deal with.

I am giving myself a year to feel sad and then I hope I can move on. But maybe I won’t ever be able to move on. Maybe I will always hold on to some sadness for what could have been. I hope not though. And I hope eventually that I will stop being angry at the universe. I hope that someday I can find inner peace, not just regarding my current situation but in my life as a whole. Someday, I hope I can forgive the universe for all the heaping piles of crap it’s given me.

Just not today.

 

A Hysterectomy is NOT an Abortion

It’s been two weeks since I was told I was being referred to UC Davis, one of the top hospitals in California. This was after my insurance denied the referral to the oncology gynecologist my gynecologist originally chose to take over my treatment. Today I called her office to check on the status of my referral, only to informed that they refused to authorize UC Davis, but had authorized treatment in Roseville. I was told the referral nurse was still processing everything and would call me back with all the details later.

A couple hours later I got a call from the referral nurse, who apologized for the delay and explained that she’d been on the phone all morning trying to straighten things out. Because the “specialist” my insurance authorized is a doctor who performs abortions for Planned Parenthood. She does not perform surgery or treat endometriosis and was confused why I would be sent to her. So the nurse had to get my insurance on the phone and explain to them their HUGE flub and explain that they needed to authorize me to be sent elsewhere where I can actually be treated. Now the referral’s been booted back to my insurance company and we will have to wait even longer for them to find somewhere to send me.

I am livid. Why on earth would my insurance think that it was OK to send me to a Planned Parenthood clinic in place of one of the nation’s top hospitals (which DOES accept my insurance) for major surgery? Planned Parenthood is great for getting birth control and whatever other few services they offer, but they don’t actually treat gynecological health issues. Our local clinic doesn’t even offer pelvic exams and couldn’t tell me where to go or who to see to schedule a mammogram. Most Planned Parenthood clinics don’t even have actual doctors on staff, just nurse practitioners. I’m already being treated by a board certified OB/GYN, so sending  me to Planned Parenthood? That’s attempting to send me to a lesser clinic for a severe problem that is more complex than my MD is capable of treating.

This is absolutely ridiculous. Whoever is in charge of dictating my healthcare at the insurance company doesn’t even have the intelligence to differentiate between a hysterectomy and endo extraction surgery and a freaking abortion. And way to rub salt in the wound! I just found out last month I can’t have kids and they try to send me to get an abortion? Why the hell is it easier to get an abortion authorized than it is to have surgery to treat my endometriosis? What is wrong with this picture?

So now I have to wait even longer to see a specialist and get my surgery scheduled, and my confidence has been shaken big time. At least when I thought I was getting sent to UC Davis I knew I’d be in good hands. Now I have to wonder if I’ll be going under the knife of someone who even knows what the hell they’re doing. It makes me a lot more hesitant to actually go through with this surgery, even though I know it’s medically necessary.

 

“You’re Losing Your Womanhood”

ice-sculptures-1935352_1920Last night my boyfriend and I went over to visit a friend, and I got stuck talking to his fiance, who is quite a bit younger than the rest of us and not exactly on my  list of favorite people. After springing “do you want to be a bridesmaid?!” on me as soon as I stepped through the door, I got stuck talking to her for about an hour, in which my diagnosis and treatment options got brought up. I was informed by this 25-year-old mother of two that I will be “losing my womanhood by never knowing the mother I could have been.” When I pointed out I could always adopt, I was informed that it wouldn’t be the same and I wouldn’t love an adopted kid the same as she loves the children she birthed from her own uterus. (The fact that she is raising a stepson/her youngest child’s half-brother from my friend’s previous relationship really made that statement a shitty thing to say…oh yeah, and my boyfriend was adopted too, but she probably doesn’t know that.) If we hadn’t been in her home I might have had a few choice words for her, but instead I bit my tongue. (She also made a remark about how I might not be physically strong enough to survive surgery to remove my ovaries in another 10 years…because a decade from now I’m obviously going to be 80, not 43.)

I’ve been stewing over that conversation since last night. This girl is one of those very vocal pro-breastfeeding, mama-worshiping mothers (as in she acts like all mothers are goddesses and the rest of humanity should grovel at their feet), and I guess she defines womanhood by the ability to procreate. Am I less of a woman because I cannot have a biological child? Is that how other women — women who have already had children — will see me from now on? Like some sad, sexless waste of space that cannot serve humanity’s purpose to procreate?

This has made me reconsider who I reveal things to from now on. I only mentioned it to her because she knows I’ve been having health issues and she asked if they ever figured anything out. I guess I could have just lied and said “no,” but dumbass me, I told the truth.

Though truth be told, I’m disgusted by this woman’s reaction to the idea of adopting a child. I absolutely do not for one minute think that adoptive parents love their children any less than parents who have biological children. And I am pretty damn sure I’m capable of loving a non-biological kid just as much as I would a biological son or daughter. What’s sad is that this negative attitude towards adopted children is still out there. Should I choose to adopt in the future, I don’t want people like this woman judging my children as being less than theirs. I know it’s a negative reflection on her own character, but damn it makes me angry. Especially since my oldest stepdaughter has pretty much been adopted (though not legally) by her aunt and uncle, who have done more for her than her biological mother ever has. Sometimes your children are born to other people. And there’s no shame in that. Or there shouldn’t be.

This whole situation is hard enough to deal with without also having to put up with ignorant people’s insensitive comments. I don’t want some young millennial mother’s pity because I can’t birth biological babies. It’s bad enough already feeling like part of my womanhood will be stripped away without other women reinforcing that notion. Why should our status as women be reliant on our ability to procreate, anyway? There are plenty of women who choose to never have children, or who can’t have children. We are not less than those who are able to make babies. Lots of women have babies who really shouldn’t. Being a mother does not automatically elevate you to some higher status as a woman or make you God’s gift to humanity. But apparently some women beg to differ.

 

 

I Can’t Have Kids

Have you ever heard these words spoken to you? No? Then thank your lucky stars.

Because let me tell you, that even if you think you might not want to have kids, having the choice completely taken away from you is an entirely different matter.

I can’t have kids. I’m 33 years old and I can’t have kids. I was told I still had time, but it turns out I was already out of time.

My partner of 10 years already has two kids, so it’s not that big a deal to him. But to me?

Some moments it’s a relief. I no longer have that option hovering over my head, whether I want to have children or not.

And other times it’s a heartache. Because it was never my choice whether I wanted to have children or not.

I feel like I’m stuck in this weird yo-yo of emotions. I didn’t know if I wanted to be a mom but at least the option was there.

And now it’s not there.

If our purpose as human beings is to procreate, then what is my purpose?

 

 

The Waiting is the Hardest Part

It’s been nearly seven weeks since I found out that I have stage 4 endometriosis. I am still waiting to hear from the specialist so I can decide how to proceed with treatment.

And I have to tell you, it really, really sucks.

First of all, I’m in pain. And now I know WHY I’m pain. So that’s a bit disconcerting.

Second, I know that surgery is inevitable. I have that looming over my head. I would like to just get it over and done with and put this all behind me.

But most of all? It sucks because I haven’t even begun to discuss my options with a specialist to even know how to proceed.

In short? It really, really sucks.

I want to get this issue taken care of so it can be over and done with. I want this all behind me.

But for now it looms before me, and I don’t know how I’m going to get through it.

Endometriosis and This New Reality

ice-sculpture-1935358_1920
On March 7, 2017 I went in for laparoscopic surgery to remove what was believed to be ovarian cysts and possibly remove my fallopian tubes if they were found to be damaged. I woke up about a short while after going under to learn that my gynecologist was unable to perform the procedure because — well, there weren’t any cysts, but there were tons of adhesions binding my insides together due to a severe case of endometriosis. My fallopian tubes were — are — in fact, severely damaged, most likely scarred from a prior infection which had gone untreated. But they couldn’t be removed due to the fact that they and my ovaries are tangled up with my bowels, my uterus is shoved out of normal position, and my colon is glued to my abdominal wall; such a complex surgery was beyond my gynecologist’s expertise. I’ll have to be referred to a specialist for another surgery. And everything needs to come out.

Which means I can’t have kids.

My mom was the one who broke this news to me. I was still loopy from the anesthesia and was more concerned with how my mom felt over this news that I would never be able to give her grandchildren, rather than wondering how I felt about it. At first I was almost relieved; I’m 33, childless, and always feel under pressure to start popping out kids before it’s too late. Well, it’s already too late, so now I need not worry about it. But as time has gone on the reality has sunk in and I have been having a very hard time coming to terms with the fact that I will never have a biological child. The daughter I used to always dream of having? Gone. She won’t ever exist.

I know I can always adopt. I know things could be way, way worse. My first instinct, upon waking after surgery, was to be grateful that I don’t have cancer, as that was a possibility. That is really good news! And I’m still grateful. But I am also angry and grieving because, ultimately, I still end up losing a lot. Endometriosis in and of itself is not fatal but it can spread to other organs, and that thought scares me. I know if I want to try In Vitro Fertilization they can try to save my uterus and ovaries, but financially IVF is out of the question. I can opt to have them save my ovaries to avoid going through early surgical menopause, but that will require further surgeries as the endo will likely come back and the ovaries will need to be removed in another 10 years anyway. If possible, I would like to avoid further surgery. So I am leaning towards having everything out but am also scared to death to actually have everything taken out as I’ve read some real horror stories on the Internet. Surgical menopause at the age of 33 means an increased risk of heart disease, osteoporosis, possible sexual dysfunction, and other health problems — including possibly a shortened life expectancy. But leaving my ovaries in while having this disease will mean undergoing hormone suppressant therapy that will put me in a temporary  medical menopause (which I read can have hellish side effects just from the hormone suppressant drugs alone) as well as the likelihood that the endo will come back and cause further complications with my bowel and bladder. I guess ultimately it comes down to deciding which is the risk I’m willing to take.

It’s been a little over five weeks since having this new reality thrown at  me, and I am still waiting to see a specialist so I can discuss my options further. A complete hysterectomy is scary, especially knowing that I could be sexually dysfunctional afterwards. I’m only 33, dammit. I’m not ready for that part of my life to be over yet. I’ve been with my partner for 10 years and he’s the only person I’ve been with, and losing that intimacy would be crushing. I’m also worried about the depression I may experience afterwards, as I already suffer from major depression and I don’t know how much worse it can possibly get. I read somewhere that if you have mental health issues they will increase by 100 percent after a hysterectomy that involves removing the ovaries. I don’t know if that’s true or not, but the prospect of sinking into an even deeper depression is certainly not appealing.

I know that whatever the future holds, I’ll get through it. Somehow. But for now I am grieving and angry so I created this blog as a place to vent and express my fears, as well as document my journey as I navigate this new reality. I know there are other women out there — many women — who have gone through the exact same thing, and I’m not alone. But right now it sure as hell feels like I am, like I’m caught in a no-win situation with a choice hovering over my head that is irreversible. I just want to make sure that I make the right decision. I don’t want to do something that I will spend the rest of my life regretting.