What the WHAT?

I haven’t blogged for a while, and this isn’t really how I wanted to come back. But I got some news today that was so frustrating, I just need to vent about it. And you’re my captive audience. 

Most people who know me are aware that I’ve been fighting with endometriosis since I was about 23. If you don’t know what it is, click here for a nice medical description.  Last November, Jeff and I made the decision to go ahead with my doctor’s recommendation and have a hysterectomy. I’d been through 9 laser laparoscopies to remove the excess tissue, and this was the next step to try and get me pain free. Made sense to me-no uterus, no uterine tissue to grow everywhere, right? 

Wrong. I knew there was a chance that it could come back. The nature of the disease is that uterine tissue grows in non uterine places. And while generally it’s just on the outside of the uterus, it’s not confined to that spot. Talking to the nurses at my doctor’s office and going over past surgeries, my disease did like to engulf my left ovary (or was it my right? I can’t remember) and the outside quadrants of my uterus. It was also quite happy to grow on my ureters and around my pelvic wall. I bet you can tell where I’m going with this…

It’s back. I started having pretty serious pain again last week. I thought, hey, maybe it’s ovulation pain-I have no clue or way to have a clue about when that happens for a lady without a uterus. But it’s been hanging in there for the last week, and I started to wonder. So I called the dr, and they are pretty sure it’s back. They wanted to schedule an ultrasound, and pending those results I’m in for another surgery. 

I cannot covey how frustrated I am. I cannot believe that it’s back already. 8 short months. Jeez, even WITH a uterus I used to be able to make it through 10 pain free months. Having the hysterectomy was mentally harder on me than I thought it would be. It makes conversations as a newlywed awkward. It makes you feel like an outsider around friends and coworkers who talk about their kids and hush when you show up. And now, to find out I had major surgery for basically nothing? Infuriating. Devastating. I want to curl up and cry. I want to go for a run until I can’t breathe anymore. I want a gallon of wine. I feel totally helpless. This is going to take some processing. I feel like I let people down. Like I let my husband down. He shouldn’t have to deal with this. I shouldn’t have to deal with this. But we do. So I’m going to take tonight and throw a mini pity party, then we’ll deal with whatever comes. Because we’re a team, and though this sucks, it’s not the end of the world. 

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Gotta end with a giggle, right?

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13 thoughts on “What the WHAT?

  1. Well, damn. That sucks. If you need it, you’ve totally got my permission to go drown your sorrows in a box of wine.

  2. Thanks for ending with a giggle … and I am so sorry you are dealing with this … and everything you said in the last paragraph – about life as newlyweds, feeling like an outsider, like you let everyone down … that all sucks, and are all valid feelings, but none of it is your fault. All yourself the pity party and the anger (and the wine!). Again … just so sorry 😦

    • You know me, always trying to end it on a high note! I try to take culpability for so many things that aren’t genuinely my fault. This happens sometimes, and unfortunately my body is just in that minority of women who can’t shake the disease. It won’t beat me, we’ll just have to keep dealing with it, and trying to do so with smiles on our faces.

  3. I have inflamed cells in my vagina that have been there for almost 10 years now. They told me I had recurrent yeast infections. I probably did, but my itching was the inflamed cells. They told me it was herpes (it wasn’t), so I was on valtrex for awhile. That didn’t work, so I finally had a biopsy. I was so excited to get answers and then I got home and they did a WRONG SITE BIOPSY! After years of arguing about painful sex with my now husband, I was just so devastated. And then I had to get another biopsy, only to find out that it’s inflamed cells and has no “real” diagnosis. After almost 2 years of trying topical ointments and taking Lyrica, and then having crazy leg itching for 6 months from the Lyrica, I had the cells lasered off. It’s been 1 1/2 years and I still have problems with it. I plan to get the surgery again in the future. And while I can still have kids and most people don’t even know about it, I feel the same way about “why me” and feeling like a bad wife because it affects our sex life and I’m only 28! My husband and I should be able to have a normal sex life and while we do much more now than before, it’s not 100%. It sucks. And it may NEVER EVER go away. Another surgery might help, but it might not. It might continue getting worse. So even though it’s not the same, I feel you in a way!

    • I am so sorry you’ve had to go through that! The hardest thing for me with gynecological diseases is the mental stigma and stress that comes with it. You break your arm, you put a cast on and fix it. Your appendix hurts, you get it removed. These issues are tied to gender identity, relationships, and on and on. They can unintentionally make you feel like less of a woman, even though you logically know it’s not true. Check back in and let me know how you’re doing!

      • Yup, you’re so right! I have felt the exact same way and it’s so frustrating, but I guess we should be grateful that we don’t have something even worse even though it’s frustrating and upsetting as it is!

  4. Pingback: Monday Rant – Crap That Annoyed Me Last Week | Running Around the Bend

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