My how things have changed

My husband often jokes about the little things that remind us we have become “adults” before 30. (He may be struggling with this a little…) Nothing wrong with it, we honestly just never thought it would all play out like this. It’s pretty clear in some ways – we had to make life decisions quickly and have spent thousands of dollars on surgeries, infertility testing and treatments instead of trips or buying our first home together. And every now and then a random reminder will pop up and we both look at each other and say “wow have things changed” with a little chuckle.

Last night I was frantic when I realized I was out of sample cups for my opk testing strips and was moments away from sending DH to the 24 hours Walgreens for mini cups. Then I remembered 2012 – big 4th of July party and Jell-O shots… we should still have the little plastic cups we used make the shots. So here I am ripping apart the house looking for plastic shot glasses that I can pee in. I have traded drunken summer nights in our backyard with friends for doctors appointments, peeing in mini-cups, fertility drugs, and getting my vagina prodded on a weekly basis.

And sadly, most days a really bad hangover sounds a heck of a lot better than dealing with this shit….

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It’s Back

I knew it would return, I just thought I had a bit more time. I already have a new endometrioma on my right ovary. Three months, just three… Really? Dr J said we’ll watch it and reminded me that we knew it would come back, it’s just sooner than we would have liked.

Well endometriosis, you can suck ass.

Suffering Should Not Define You As A Woman

Personally one of the hardest parts of dealing with endometriosis has been getting people to understand the sheer misery I went through monthly. I have always struggled with painful periods and can’t even begin to count the number of times a doctor said, “It’s normal. It’s just part of being a woman and unfortunately you have it worse than others.”  (The main reason I am so thankful for finding my current OB-GYN is that he was actually the first doctor to ever actually listen to me. My life has changed drastically in the past year thanks to his patience and dedication to helping me.) Let me just say, the pain I felt was not normal and never will be. Not only was it abnormal, it was terrifying and lonely. No one understood what I was going through and they all told me on countless occasions to stop being dramatic. So as I battled this silent disease I was starting to slowly resent those closest for me for not understanding.

Every single month I would be minutes away from a panic attack knowing the hell I was in for. That is not normal.

Sometimes late at night when the pain was so bad and I could barely stop myself from screaming, I would sit in the shower and sob. I would cry so hard that I would wake my husband asleep in the next room. “Are you ok?” he would ask and I would squeak out a yes and then be embarrassed I had been caught. That is not normal.

I missed work, school, important dinners, and even a trip because I was so crippled in pain. That is not normal.

Yet somehow this extreme pain and isolation didn’t show others how much I must was suffering rather made them label me as weak and led to such comments as “just suck it up,” or “you’re being a baby, it can’t be that bad.” I still find those comments humorous because many days getting out of bed was “sucking it up.”  Looking back I realized – suffering was defining me as a woman.

I have spent considerable time searching endometriosis online and saw this video of Susan Sarandon speaking about her experience with endometriosis. I found much of what she discussed in the clip interesting – she challenged people to pay attention to your loved ones and trust them. When no one will listen, be their advocate and tell them to research more or see a new doctor. Simply… listen so you can help them more.

While my dearest husband has always been supportive, he has little patience with people being “sick all the time.” We have struggled getting on the same page on what I am going through.  Sometimes I feel as if he forgets that endo is a chronic pain disease and no matter what I do or try, I will always deal with this.

Now thanks to a wonderful acupuncturist and the community at her practice, an amazing therapist, a very patient close friend, and fantastic infertility support group I have realized that I have countless people through my journey. I finally have my people to listen. And these people, some even strangers, have helped me become so much more aware of how I can help others. If I ever hear or see someone suffer the way I do, I will do everything in my power to help them. I will listen without judgment and will provide them with every fragment of information I can. And when someone blows them off, I will be the first person in line to charge the office door. And I will help them because I know they are not “sensitive” or “overly dramatic,” rather are dealing with a disease that is much bigger than simply sucking it up.

What Not to Say

One of the hardest parts of dealing with infertility is listening to everyone else tell me what to do as if they are an expert on creating life. While I have not been overly open with friends and family about my situation, many are still aware that we are having a few “general issues” due to my endometriosis. Regardless if they know about someone’s struggles or not, I am absolutely floored at what some people will say to others about trying to conceive. A few of my “favorites” –

1 – Just because people get married and are in their late 20’s or early 30’s it doesn’t mean they are able (or are even want) to pop out a kid right away. “So when am I going to be getting that grandchild?” or “how long have you been married? you should have popped out a kid by now!” I mean, I can’t…..

2 – Never ask someone how long they have been trying OR if you know it’s been a while, why they aren’t pregnant yet. I already stress myself out with every month passing, I don’t need you reminding me of it too.

3 – “Everything happens for a reason.” Yes it does, including me smacking you when you say this.

4 – “If you just stop trying so hard, it will happen.” You’re right, the adhesions will just stop growing in my body, I will suddenly start releasing eggs, and implantation will finally happen all because I stopped trying so hard. Why didn’t I think of that?

5 – “I don’t think you’re timing it right, just have lots of sex right around the middle of your cycle and it will work.” – You can just go screw yourself with that comment. A lot and in the middle of your cycle of course!

6 – “You’re still young, it will happen.” Or my favorite version that I get every time I see a new doctor or specialist, “Oh wow, you’re young…” – Endometriosis and infertility don’t care about your age and you reminding me that I am a few years younger than the average person is just salt on the wound.

7 – Don’t tell them that infertility isn’t that big of a deal and that it “will all work out in the end.” And most importantly, don’t call them bitter or pessimistic. As someone who has sat in countless appointments and talked about my situation with numerous doctors and specialists, I am realistic. I am fighting low odds and I pray every day for a miracle but minimizing the problem just makes it worse.

8 – Please don’t complain about your pregnancy. I haven’t been pregnant so if it is the worst experience ever, I wouldn’t know. BUT I do know that just being around pregnant women can be hard for someone struggling with infertility and listening to you complain about something we would kill for is pretty hard to chew. You’re growing a little human and we would be kidding ourselves if we thought it would be rainbows and sunshine the whole time….

9 – Finding out others, especially those close to you, are pregnant might be one of the most difficult things for an infertile woman to hear. Do not, and I repeat, DO NOT tell them to calm down (this should be a general rule in life, but that’s another blog…) or ask “I don’t understand why you’re not happy for them?” There is excitement but with that comes emotions many will never understand so be supportive instead of judging what someone should or should not be feeling.

10 – Don’t ask too many questions. Just don’t.

11 – Finally, never ask a woman who is struggling to conceive if she is pregnant. I don’t care if she’s sick, not drinking, tired, or what – making her say “no” out loud is like kicking her in the stomach for the next hour straight.

Resolve has a great article that discusses these and a few more, check it out here: http://www.resolve.org/support-and-services/for-family–friends/infertility-etiquette.html