Worried about the…

Worried about the folks in New Orleans. Watching the news and trying not to get too weepy. Waiting for word on what's the best way I can help from all the way over here.

In the meantime, blogging. We were slow getting out of the house yesterday; didn't make it down to Randolph Street until close to 3, and the market was due to close at 4, so we had to walk fast. We were open to a lot of different styles in china cabinet; the china itself is very simple, plain ivory with a gold border, so we didn't feel the need to actually display it, which gave us a lot more options. In the end, we went with a kimono chest from a place called Wow & Zen, a store I quite like and which I've bought from before. He gave us a good third off the labelled price too, probably because it was the end of the market day and he didn't want to take it back to the store. The chest isn't a real antique yet, since it was only made in the 1940s, but we don't mind. I fell in love with the red and gold carvings on the bottom edge, and the intricate metal handles, and the neat joinery of the wood. We had to move a lot of furniture around when we got home, trying to find a place where it would fit, since it was too deep for the hallway we'd originally intended for it. But I think we ended up with a happy space for it. Welcome, little chest. (Big chest, actually.) May you hold china and office supplies in perfect harmony.

In the evening, Kev and I had a long discussion about the future, talking about job and finance and medical and other stuff. Good talk. Somewhat tiring, but worthwhile. Probably more talking to come. I love that boy.

Speaking of medical, that just reminded me that I never did tell y'all something I meant to tell you about a while back. I hesitated because a) I didn't want to worry people until I knew exactly what was going on, and b) it's girly medical stuff, and I still have enough cultural conditioning that I hesitate about talking publically about stuff 'down there.' It feels inappropriate, somehow. Which is ridiculous, and I'm getting over it right now.

The short version is, I have uterine fibroids, which aren't a very big deal, but scared the hell out of me last June, and may end up requiring some minor surgery this fall. The longer version follows, mostly because I wish I'd known about this disease in advance, because maybe then I wouldn't have freaked out so much. Given how common they are, I figure all of you who are women, or who know women, should know about them too. About one-third of women will get uterine fibroids, usually when they're a little older than I am.

It all started in June, when I noticed a lump near where I thought my right ovary probably was. Anatomy is not my strong point. Actually, that might have been May; I think I was in denial about it for a while. I only noticed the lump when I was lying down; it disappeared when I stood up. Eventually I got Kevin to poke at it, and he confirmed there was a lump. I immediately became convinced in the back of my head that I had ovarian cancer and I was going to die, probably within six months. I knew that wasn't likely, but the back of my head doesn't listen to the front of my head so good. Kevin went and did research on the web, and came back to tell me that it was really really really not likely to be cancer, because there were all kinds of much more likely possibilities. This helped some, but not as much as it should have.

I got to a doctor (after some short-term health insurance madness) and he said that it was almost certainly uterine fibroids. He sent me for ultrasounds to confirm. They confirmed.

The bad news is that there's one quite large one (bigger than fist-sized) and lots of smaller ones, and my uterus is now about three times the size it would normally be. The large fibroid, if it keeps growing, will probably start pressing on my kidneys soon and may damage them, so that doctor thinks surgery is the right option. It's fairly minor surgery as these things go, very common, very safe, but will leave a scar under my abdomen, and of course, there's always risks with surgery. One clear unfortunate consequence of the surgical option is that if I do decide to have kids someday, I pretty much have to have a caesarean, because the surgery will damage the uterine wall and a normal delivery would risk a ruptured uterus. Caesareans are very common these days, but do carry some additional risks.

It's unclear whether or not I should first take the medicine that mimics three months of menopause (no fun) -- we're hearing mixed opinions on the pluses and minuses of it. It decreases bleeding, making the procedure simpler and less invasive, but it shrinks the smaller fibroids enough that they're hard to find, so the surgeon may miss some or many of them. Will get more info before deciding.

We're not super-impressed with this doctor, so we're also going to research Chicago ob-gyn folk before continuing. We were waiting for my full-time Roosevelt health insurance to kick in (the HMO plan has no problem with pre-existing conditions), so now that that's in, I'm on task to find a new doctor this week. Hopefully we'll have it all sorted out soon. Since I have no pain or other symptoms (like massive amounts of bleeding, which sometimes happens), there's no need to rush to make any decisions or start treatment, thankfully. But it'll be good to have it dealt with.

Once we knew it wasn't cancer, I calmed down a lot, but I still feel a bit like there are aliens growing in my body, and I resent the universe for it. There are various long-term ways in which this could impact fertility too, and even if I don't choose to have kids, it's frustrating and frightening, having that choice limited by some random disease. I find the thought of surgery scary, even if it's totally minor and routine. And I'm not looking forward to the pains and aches of actually dealing with this, including recovery time.

But it could have been much much worse, so on the whole, I've been pretty relieved.

13 thoughts on “Worried about the…”

  1. When you get here (or if you want to call), I’d be glad to talk to you in more detail. About 10 years ago I was diagnosed with endometriosis and went through similar testing, surgery (-ies in my case), and hormonal therapy.

    I totally sympathize with your feelings. It’s hugely scary. But you will feel better (emotionally, too) when you get it taken care of and you feel more in control.

    You’ve got a sympathetic ear here. 🙂 You’re doing the right things and you’re going to be fine.

  2. Janet was diagnosed with endometriosis earlier this year, where the endometriomas were located on her ovaries. After too much back and forth between doctors and technicians and specialists, we got an appointment for surgery; she went in early morning, and we came home around 5:00. I was amazed that this was outpatient surgery. She was groggy and nauseous the rest of that day, and pretty uncomfortable the next week, but she bounced back quickly.

    She got two small scars on either side of her abdomen, right at the waistline, and they’re barely noticeable.

    It was scary for both of us, but everything turned out fine. We had to deal with a hellaciously backward drug company for the follow-up treatment (Lupron), but that’ll be over as of next month.

    You’ll do fine, Mary Anne. There’s a good chance that since they caught it now, you’ll have a good chance to have kids later.

  3. Fibroids, of all the feminine itchy problems, seems like the most treatable. Every woman in my family has them and has met with great fertility success (too much?). Although my mom’s fibroids became bad enough to have a hysterectomy when she was 45 or so, she never had any other problems. I have one small one that the doctors aren’t too worried about and I haven’t any fertility issue. See baby Zoe for confirmation–unless it was the fibroid that forced Zoe out early (which I’ve never heard of). I imagine them fighting for kicking room….

  4. Wait. I forgot to say how happy I am to hear that the thing you couldn’t mention was this. I was so worried this summer because of those foreboding entries.

  5. I second what Nicole wrote. I am so glad it wasn’t something worse. And the state of treatment is SO much better than when my mother had bad fibroids fifty years ago.

  6. Hugs! Little T has been through several routine surgeries and I still get scared every time. It’s natural.

    I used to work as a guide on Fertility Friend.com and from there I’m aware there are online support groups for women with fibroids. The June issue of Oprah Magazine also had a good overview of fibroids. It mentions a bunch of other options that you didn’t mention. It also has a quote from Charles Miller MD a fibroid specialist in Chicago. Please let me know if you want a copy.

  7. I echo Thida’s comments about support groups and investigation of alternative procedures short of open surgery. My wife has fibroids, as well, and she will be having a non-surgical obliterative procedure as soon as her surgeon recovers from surgery.

  8. You know it seems that this year lots of folks I care about have had unexpected surgery. It’s been a tough year for all concerned, but on the bright side all have come through famously.

    I know you will too.

  9. Mary Anne, thanks for talking about this. It’s not something I was overly aware of, so it’s good to know now that it’s a common occurrence. Therefore, if I experience a similar situation, hopefully this is where my mind will leap, instead of the more terrifying alternatives. Which is not to downplay what you went through/are going through — medical stuff is scary stuff. But I’m glad to hear you’ll be just fine.

  10. My mom had uterine fibroids. But, from your description, I gather she found out about her condition at an earlier stage. I am not sure.

    If you are still doing your research and if there is no danger, do check out ‘Siddha Medicine’.

    My mom was all prepared for the surgery, like you are now. But, a friend of mine, whose mom underwent similar surgery dropped in one day and told my mom that her mom had some side effects and that they later came to know a siddha doctor. She adviced my mom to talk to this doctor first.

    My parents did. And my mom took various herbal medicine prescribed by the doctor for an year. There were also dietary regulations. My mom took ultrasounds periodically after about 4 months and we were all amazed to see how the fibriods seemed to shrink.

    I know that there is a siddha doctor in Toronto. Will ask around for the contact info. if you want me to.

    Take Care!

    -Mathy

  11. I’m visiting your site after reading your book and happened upon this journal entry. So sorry to hear about the fibroids, but the medical technologies these days are absolutely phenomenal and I know you will be just fine. I just had my 2nd baby about six months ago (a lot of complications with this one that landed me in the hospital for about 2 months prior to birth), but my OB-GYN is phenomenal. Very attentive…really listens to you…Her name is Dr. Brenda Darrell, and she’s head of the OB-GYN Faculty at Illinois Masonic Medical Center. They work closely with the Women’s Health Center where my aunt – Dr. Raja Nadimpalli – is an amazing internist. Both my kids were c-sections, and Dr. Darrell performed both of them. If you want to see her and my aunt for follow-up care, please give me a call. I would be happy to make the first phone call and make sure that you get an immediate appointment. With all of my complications in child birth, I found that a doctor who really listened (to both me and my husband!) was so critical, and Brenda is amazing with that. Not to mention she’s an amazing surgeon. (I have a tatoo on my belly and didn’t want my c-section to mess with the tat :-)) Needless to say, both my kids and my tat are all doing beautifully thanks to Brenda. Please email me if you want to pursue further…

    Arin

  12. Thanks everyone for all the support. We are looking at a variety of treatment options; Consumer Reports had a particularly helpful set of pages comparing the main options. It looks like given my particular situation, surgery is still likely to be the best option for me, but it really does seem to be a minor procedure. Feeling much better about it all these days, though you should expect to hear some whining closer to the actual process.

Leave a Reply

Your email address will not be published. Required fields are marked *