Thursday, September 04, 2014

Getting Personal: I'm Having a Hysterectomy on Monday

I've talked a bit about this on Twitter and Facebook, but I've hesitated writing anything on the blog because truthfully, I don't know who out there is reading this. (If my stats are to be believed,people in China seem to love me.)  But as I was talking with a friend, I realized that there wasn't a lot on the internet that helped me out when I first learned I was going under the knife, so I decided that if I could help someone else looking for info, then I should just sit down and put pen to paper, so to speak.

So here it is: I'm having a hysterectomy on Monday.

Some people might assume that because Alan and I are child-free by choice that we're opting for the most aggressive form of birth control on the market: removing one's uterus. While that is going to be an added side benefit for me, for sure, that alone was not what led to this decision.

You may have noticed that elsewhere on social media I'm a pretty vocal advocate for women's reproductive rights and that I get pretty rabid when old white men in positions of power equate chemical birth control usage with being a Slutty McSlutterson. Aside from the fact that I hate when women who enjoy an active sex life are labels sluts or whores when men in similar positions are given high fives for their conquests, the thing that angers me most about this controversy is the fact that many women - myself included - have to take hormonal birth control in order to control problems with our bodies. You see, I had to start wearing a bra at nine years old and I began my period at the ripe old age of ten. To say I was an early bloomer is a bit of an understatement. I turned 37 on Saturday. For those of you not good at math, that's TWENTY-SEVEN YEARS of horrible, painful, debilitating periods. I've missed school, work, parties, events, and any host of things because I was curled up in the fetal position in bed bleeding like a wounded soldier.

Last February my problems became worse than ever, and my primary care physician at the time changed my birth control pills to one that included a higher dosage of estrogen. That worked somewhat, but not entirely. I remain incapacitated for several days of the year. Unfortunately this new pill regime wasn't a cure for my condition, and in fact, was one that I wasn't entirely comfortable with given my family history of breast cancer and the link between birth control and this particular form cancer. Still, these concerns weren't enough to lead me to a hysterectomy.

No, you see, I didn't even know that was an option for women with my history, and in fact I probably wouldn't have if I didn't start experiencing a whole slew of other problems with my internal lady parts.

Back in April, a couple of weeks before we left for Alaska, we were at Alan's mom's house. It was a regular day, nothing untoward. As we stood up to leave I felt a terrible ripping pain across the lower right side of my abdomen. The pain was unlike anything I had ever experienced before, and it left me short of breath and seeing stars. It happened again a few weeks later and I started to worry that maybe I had a hernia. I did some reading and talked to a friend that had recently gone through surgery for the same situation, but quickly ruled that out based on a lack of highly visible physical evidence. In the meantime, I hoped that I wouldn't have these pains in Alaska, and thankfully I didn't.

Alas, when we were back, I started having them again and so I visited a new doctor. (I had been planning on switching my primary care physician anyhow, so this was as good a time as any to make the change.) Unfortunately, the pains became much more frequent and at the beginning of July I was pretty much in constant pain. On July 3 I had an intra-vaginal ultrasound to determine what was wrong - my doctor suspected that I had had a burst ovarian cyst, but she was concerned that the pain hadn't gone away. The ultrasound revealed an enlarged uterus with the presence of fibroids and/or polyps. Unfortunately, the technician who performed the ultrasound was unable to get a good picture of either of my ovaries so my condition remained a mystery. Given the results, my doctor said I should see a specialist immediately.

After calling all over kingdom come to try and locate a doctor in Oakland or Berkeley that could see me immediately it became clear that was not an option. I was finally able to book an appointment with a well-regarded ob/gyn in Berkeley for late July, which means I've basically spent the last several months in constant pain: sneezing, coughing, laughing ... they all hurt. Sitting for too long in one position is also a pain. And let's not even talk about being able to sleep through the night without hurting. At this point, I pretty much feel like I'm walking around with a knife in my abdomen and any major movement just pushes it in further. It's really amazingly awful and has definitely impacted my quality of life over the last handful of months.

I met with my doctor before we went to Maine and she and I decided that instead of trying even more hormonal methods of controlling my out of control bleeding and pain that we'd try our damnedest to eliminate the problem all together. Enter the hysterectomy. The plan was to remove my uterus and fallopian tubes, but to keep my ovaries and cervix. Yesterday I had my pre-op appointment and because my pain is getting worse, my doctor believes that my endometriosis has, unfortunately, adhered to internal organs on the right side of my body which is what is causing my chronic pain in that region. Specifically, she thinks it has attached itself to my right ovary and my appendix. The thing about endometriosis is you can't know for sure without opening up the body. So, based on yesterday's appointment the plan is to now remove my uterus, both fallopian tubes, my right ovary, and possibly my appendix.  She'll know for sure once she cuts me open and sees what's what. Truthfully, I am hoping that once she gets in there it's pretty obvious what the problem is because I'd really like to be done with this pain and suffering and get on with thee process of healing and feeling better.

My surgery is on Monday, and I will be off work for two months. Please wish me luck and keep me in your thoughts, because I definitely need all the warm fuzzies I can get.

While signing the informed consent procedure document yesterday, I of course had to acknowledge all of the things that could possibly go wrong. I won't lie and tell you that it didn't freak me out. IT FREAKED ME THE EFF OUT. So much so, in fact, that I had a full on panic attack right there in my doctor's office while sitting naked in a backless robe. Thankfully Alan was sitting next to me and we've been together long enough that he can tell when I'm about to lose my shit. Incidentally, this is the second time I've had a near-fainting experience due to a panic attack while sitting in this particular doctor's office. It must have something to do with talking about getting one's innards removed.

21 comments:

  1. Seppo8:28 AM

    Thanks for writing this. It's great to be able to understand in more detail what's going on. Sounds even more awful than it's sounded when you've talked about it previously, and if you need anything in the next two months (but not after THAT, pffft), drop us a line any time. Fingers crossed that a.) it's SUPER OBVIOUS what's wrong once the doctor can see what's going on, b.) the solution is effective and permanent, and c.) it's a safe & speedy recovery.

    ps: re: lack of comments, it may be because the Twitter/G+ login stuff you've got isn't working. I can't log in via either method - both just return errors.

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  2. I can understand why you freaked out. It's a lot to take in. I'm thinking positive. You are going to be fine. I bet you can't wait to get past this. While you recover you'll be able to read so many good books, and that's a good thing.

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  3. Jeebus, dude, that is rough. I'll be thinking about you, for sure! Hope it goes smoothly and recovery is a breeze!

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  4. I've tried to be pretty lighthearted about the surgery in public because I didn't want to cause any worry for people. I may hit you guys up for food if Alan becomes derelict in his nursemaid duties. ;-)

    Re: commenting feature - I've turned off Twitter and G+ until I can figure out what's wrong with it.

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  5. Seppo3:45 PM

    No problem-o! Just give us about 24 hours if you want a home-cooked meal. Grocery run or something any time. We'll try to be proactive about bringing something over as well. Is the procedure going to keep you in the hospital for a few days? Will hit up Alan to try to find some good time after you're home once you've got an idea how things are going.

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  6. casacaudill4:21 PM

    I should be in the hospital for 1-2 nights if all goes well.

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  7. Sara D3:33 AM

    I have always felt so horrible about all the discomfort you seem to be in. I wish you a very speedy recovery and hope you heal quickly.

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  8. I'll be thinking of you, and hoping you have a speedy recovery :)

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  9. Thanks Sarah! Hopefully this is the procedure that finally fixes all of the woes I've had for so many years. That'd be amazing!

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  10. Best of luck with your surgery. I also wanted to thank you for your willingness to share. I've traveled vicariously through your blogs/journals for years (dating to the WC days) and only wish the very best and quickest positive outcome for you.

    Aida

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  11. Hi Aida, thanks for your kind words.

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  12. Many many creepy Internet 'stranger' hugs and fuzzy feelings! This is big and scary! Thank you for sharing, and know that I will be thinking of you on Monday. I hope recovery goes smoothly and that this means you can finally have relief from all that pain.

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  13. Michael (& Shannon + Drake)7:57 PM

    I'm a whole knot of emotions with anger & frustration that you've had to endure this pain and for so long, a bit scared at the prospect of being under the knife, but hopeful the surgery will fix this and you will recover quickly. Oh, and slightly amused that Alan may be a nursemaid, derilict or not :)

    Lots of love and warm fuzzies from Seattle coming your way, -M (&S+D)

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  14. I've only known a handful of women who've gotten hysterectomies and I know the recovery can take awhile, so I'm sending you LOTS of good thoughts and definitely hoping the doctor gets a clear view of what's going on. I'm sure she will. I've also known a few women who have had endometriosis and have heard it's incredibly difficult to live with. Actually, I've heard some horror stories so I feel for you. I have PCOS (ovarian cysts, basically) so I know what it's like to have some issues in the lady parts but the pain I've had is minor compared to what you're going through and my latest OB/GYN wouldn't give me an ultrasound because she said "We would just treat you with birth control if you had cysts, and that's what you're on already so it's pointless", despite the fact that I've heard that women with PCOS SHOULD get ultrasounds to make sure their ovaries are in good shape. It took a long time for me to get diagnosed and right now I have a great specialist (not the one I just mentioned) who's treating me so that I feel a lot better. All that to say, I sympathize (and like talking about lady part issues), although I can't imagine having the pain you described. Sending you lots of love!

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  15. Not internet strangers, imaginary friends. ;-)

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  16. To be fair to Alan, he's actually an AMAZING nursemaid. He's been taking care of me for months now and doing a most excellent job.

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  17. My sister has PCOS so I know how awful it can be to live with it. In her case it was diagnosed while she was trying to get pregnant so taking birth control pills wasn't an option.

    We know Monday's surgery will certainly take care of my painful periods and hemorrhaging; let's hope it also takes care of the chronic pain in my abdomen.

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  18. Oh, my friend, that is the WORST! I'm keeping my fingers crossed for you, for an uncomplicated procedure, a speedy recovery and an overall cure to the problem. The prospect of surgery is such a frightening one (I, too, would have been having a panic attack on the table, so you're not alone in that department) but if it improves your quality of life then it's absolutely worth it. As they say: short term pain... Thinking of you, dude. Sending you good wishes and love.

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  19. Based on what my doctor told Alan it was an uncomplicated procedure, although it did take a bit longer than advertised. The fact that it was uncomplicated leaves us with a bit of head scratching though because I went in thinking I had a host of problems based on several years of doctor feedback and those problems were not evident once I was opened up. So now I don't know what a lot of my pre-surgery pain was caused by. I just wish I had a clear answer.

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