A Bundle of Major Diseases
I swear, if a bunch of doctors didn’t agree on all these diagnoses I would be willing to submit my photo for the definition of “hypochondriac” in the dictionary. I am gonna talk about another one of them right now, and it’s in the vaginal region – so, you boys have been warned.
But first, so you can understand the number of doctors I see and the number of medications I take, here is the rundown of my major medical maladies:
– Night Terrors (none since last week, woo hoo!)
– Diabetes (P.S. November 14th is World Diabetes Day!)
– Haller’s Cells (Still considering sinus surgery, but not really… as they would have to rip my face off and that does NOT sound fun. I mean, who wants to be John Travolta or Nicholas Cage in real life?)
– Acne (Somewhat related to the diabetes, and mainly, how else could I get all that Retin-A to keep my skin looking buff, yo?)
– And the subject of today’s post: Endometriosis/Really Sucky Periods.
So, it all started a long time ago, in a galaxy far, far away. My periods were so bad during high school that I was missing at least one day a month from school. And since that is totally unacceptable to the modern public school establishment, my mom zipped me down to the local Planned Parenthood and got me on the pill at age 16, before I had even been properly kissed. (Unless you count that awkward grazing of cheeks at age 12 when I was at sleepaway camp – which. I. don’t.)
The pill definitely helped. I was on it pretty much continuously until Bryan and I decided to have Declan in 2002. And after Declan, we thought long and hard and realized we were absolutely happy with our family of three. So, Bryan marched off to the docs and had the good old snip snip. Birth control, check!
But the bitch was back.
Bleeding that would make any anemic proud, cramps that seemed like labor (but I wouldn’t know), nausea, hormonal swings – every fucking month.
We tried the pills again, but they just did not agree with me. Not sure if it was all the other meds, my age, or if I had just gotten so used to the side effects from the birth control pills when I was young… but I was not willing to take that train this time around.
Meanwhile, my sister. My sister has had a really rough year with her uterus. Her endometriosis makes mine look like a Curious George trying to snuggle up with King Kong. And I am allowed to talk about it publicly because, 1. she is my sister, 2. she is becoming quite the advocate for endo patients, 3. she never reads my blog unless I write about her and 4. have I mentioned, she is my sister?
She is about to have her second surgery this year to scrape all this crap out of her, after her first doctor went in and freaked out over the tropical rainforest of endometriosis she had blooming all over her abdomen.
But, do you even know what endometriosis is? It’s seriously freaky, dude. Basically the lining of your uterus grows outside your uterus, anywhere it wants. And when your menstrual hormones kick in, that lining fluffs up with blood just like inside the uterus, and sloughs off just the same as inside the uterus… except all that shit inside your uterus HAS SOMEPLACE TO GO. The endometriosis is pretty much like internal bleeding, is really viscous, can make internal organs stick to each other, cause scarring … a ton of bad shit.
And guess what else? Endometriosis research and treatment is VASTLY underfunded in this country.
VASTLY. UNDERFUNDED.
You know WHY?
(Excuse the feminist bent here)…
BECAUSE MEN DON’T HAVE PERIODS.
So, my sister struggled through nearly a year with a doctor who poo-pooed her symptoms. A doctor who didn’t listen to her. A doctor who finally agreed to perform surgery on her and shit his pants when he saw how loaded with endo she was. A doctor who only got a fraction of it out because he had other surgeries scheduled that afternoon and refused to bump them. A doctor that she has FINALLY kicked to the curb in favor of a doctor who called the emergency room TWICE to check up on her when she was there last week for severe dehydration, nausea and anemia due to her endometriosis. A doctor who knows his shit and is going in to get the rest of the evil out of her in December.
But she had to do her homework. Had to research and call and claw and fight to find the right doctor.
And that just sucks.
And this will be a lifelong battle for her, because endometriosis does not go away.
So, what about me? I had the Minera IUD put in on Friday. It hurt like fuck because she had to do it without my period (they like to do it when your cervix is open, and the beyotch couldn’t even give me that and has not arrived to this day) and I was a “virgin cervix” to boot since Declan was an emergency c-section. But supposedly this form of IUD is more localized and the hormones will help my less-dramatic symptoms without whacking me out system-wide like birth control pills do. We’ll leave it on for 3-6 months and just see.
Either way, seeing as Bryan has had a vasectomy, at least we know there is NO WAY IN HELL we’re getting pregnant any time soon.
Shall we add a condom too and make it the holy trinity of birth control?
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Gosh, that sounds horrible. PVs to you both.
ok you know how last week i was all whacked out hormonally because i started a new birth control? yeah, that is peanuts compared to your horror (and your sisters, good god!). i’m just gonna shut my complaining mouth and curl up with my heating pad and thank goodness i don’t have endo. it sounds horrific. i remember learning about it in femal phys and gyno in college. that class made all the female students enrolled make appts with the health center.
there is such a thing as too much information. that class proved that.
i really hope the iud helps. you’ve suffered enough- just skip the condom!
My hearts go out to you both. Awful awful… Glad your sister is getting the help she needs. (Good luck with the IUD.) Blind faith in anyone can get you killed, and that includes doctors.
Shhesh, that’s one sucky list!
Wow, what a horrible doctor. Talking about working for the all mighty dollar!
I think this is the first time I’ve ever seen a post that talks about endometriosis. That’s weird because I think all of us have someone we love who’s been affected by this. Thanks for a smart and touching post.
I actually went to the ER cause I literally couldn’t see straight from dizziness and nausa and vomiting. It hit me just 6 hrs before my period started and this was 3 days into it when i finally went but they “diagnosed” me with inner ear dysfunction. My accupuncturist (he’s a former OBGYN from China) made a funny comment I have seen Endo in the nose but never heard of it in your ear?? Let’s hope it’s not in my ear. An added note on the great search to help fix this horrible and incurable disease… in 2000 NIH of the overall 16.5 BILLION $ Budget a wopping 2.7Million earmarked for Endo. That equates to .40 yes thats 40 cents per Endo patient… in contrast to the planned alloment of $105 per Alzheimer’s and even $30 per Lupus patient. Pretty messed up when its the 2nd leading cause of hysterectomy’s in this country. Ok i’ll stop my rant. Sorry.
i cannot believe that a surgeon had your sister opened up and didn’t do the work that needed doing because he had other things to do that day!! ack!
Endo is no fun. a dear friend of mine has it (who is also now trying to get pregnant!)
Oh your poor sister! But good for her that she was able to persevere. I hope the effing idiot doctor is more responsive to the next woman who sees him. What an ass.
There is an endo commercial on the radio that just makes my whole body wince–the detail is horrific!
I’m so sorry for you both. I hope the IUD helps!
(And yeah, no condom. i think you two crazy kids are all set)
Wow! I have a few friends with endo and you have just encouraged me to do some homework. I’m so sorry fot the both of you.
Aimee, that is the most graphic description of endo I’ve heard. I have new sympathy for sufferers. Hope things get better for you and your sister!
Doh, I hope I have not finally crossed the TMI line, LOL.
But I felt like it was important that people understand what it is, since most people don’t.
Thanks so much everyone.
Poor Karrie! I knew a little bit. I had cramps and AF like you did when I was in high school. For some reason, they are not nearly as bad as they used to be.
My mom was awful, too.
I hope Karrie sees a new life in December.
I have a friend who had endo and it got so bad she had to have a total hysterectomy. Not a good thing. She was pretty young.
Luckily, I’ve never had endo, but when I was in my 30’s my periods got so heavy I couldn’t leave the house and (not to gross anyone out) had to change extra-extra heavy pad, plus extra-super-sized tampon hourly. It was awful. Since I was done having children, we just agreed to have surgery and get that bitch out of there and I’ve never felt better (that body part, any way). It was really scary and painful – the doc couldn’t believe I WASN’T anemic! It was nuts. (They did leave the ovaries).
I’m glad you sis finally got a doctor who gave a shit. Doctors are on my hit list right now. I’m not happy with mine but also wasn’t happy with the one I tried to go to as a change. Now don’t know what I’m gonna do. *sigh*
Take care, hun. Hope it works out for you.
How scary. Thanks for sharing.
I hope it works Aimee; and I’ll be thinking of your sister too — let us know how the surgery goes.
FWIW on Mirena, I had some random bleeding for awhile and am now down to zero. But I don’t have endo.
I suffered for many years before finally finding out that I had endo. It took moving to another state to finally find a totally awesome doctor who didn’t want to poo-poo my list of woes and shovel b/c pills down my throat.
I have since had 2 laparotomies, 2 laporoscopies, been in chemical menopause twice, not to mention losing an ovary in the last go-round.
If you do your research, you will find that Aimee’s wonderful post just scratches the surface of what other (omg) symptoms are possible.
And forty cents per endo patient is truly and unbelievably pathetic.
Sorry if this comment is TMI, but it is a relief to read this and know that someone can relate.
IE, welcome and thank you for posting!!! Nothing is more TMI than what I wrote. 😉
I have a friend who suffers from endo too. She doesn’t talk about it. She won’t talk about it. Like she’s ashamed or something.
I’m glad YOU are talking about it! I really don’t know that much about it and now I want to learn more.
You comment about Men not having periods and thats why there’s so little $$ spent on Endo research is dead on. Most “female” problems are quite underfunded.
Anyway, here’s hoping your sister can get some relief from her new doctor.
And, one last thing. I had my 2nd Mirena IUD put in a little over a year ago and I still love it. I hope it works for you. But you may have to give it a full year to settle in and keep your periods to almost nothing. Wow, that is nice tho.
That sounds like a friggin’ nightmare. My fingers are crossed for both of you!
I don’t think you’re getting pregnant anytime soon, sista!
And although I feel for your sis and YOU, it’s nice to know there are others out there who have had to convince their own doctors (who may be geniuses in pregnancy and deliveries – especially my freaky kind, but are clueless to these things) to do SOMETHING! 7 years ago my doc removed scar tissue that was attaching my uterus to one of my ovaries! OUCH! No kidding I had pain. And I, like you, started the pill at 16 for heavy, painful periods and am still taking it (Yasmin, it’s supposed to make me less “irritable”, we’ll see). Anyway, I’ve always had problems and pain and my doctor just kinda shrugs it off. This time, he mentioned that I may have “pelvic congestion” WTF? I’m thinking of a 2nd opinion now, especially after reading this.
Sorry for the hijack. It was a great post, Aimee.
I have never seen a more spot on description of Endometriosis. Wow.
I’m sorry to hear about you & your sisters’ endometriosis. That sounds horrible! And the treatment your sister’s is not getting! How awful, and how silly in a western civilized country, treating women that way. It’s insane!
They thought I had endo when I was 19 based on my pain and such. Did a laprotomy and found nothing!
Actually I had clinical depression and stomach pain and bleeding was the physical way my body was telling me I was sick.
Finding the right doctor does take research. They all graduate from Med School but like every school, not all the kids are stellar students.
I truly hope you find some help. I have Rheumatoid Arthritis (found out this year) and am on a long road to relief as well.
Hugs
Welcome Blogapotamus. Awesome comment, but I really must say I smiled every time you said “Ladyplace Doctor.” I am going start using that.
And MoxieMom… I am sooo sorry about the RA. My Oma had that and a good friend’s mom, and it’s a terrible disease. We’re pulling for you.
Holy crap, doctors are so unbelivably awful when diagnosing ladyplace problems! Thanks for being so open; so many women feel so alone when they suffer from issues below the waist.
I had two miscarriages before having my daughter and you know what those bastards had to say? “Oh, it’s very common. Just try again.” I was like, “Have YOU ever had one? No? Well, then kindly shut the fuck up.”
It wasn’t until I got refered to a specialist ladyplace expert that I got any sympathy. He said, “Oh, I’m so sorry. That must have been terribly disappointing for you. We’re going to find out what’s going on.” I had a laparoscopy/hysteroscopy that didn’t yield any clues, so he did lots of blood work and found that I wasn’t producing much progesterone. So, when I finally DID get knocked up again, he put me on progesterone and 9 months later, my daughter was born. It makes SUCH a difference getting someone who gives a damn about you!
Oh gosh – my sister has endio and she suffers. Can you cut that evil uterus out?
I’m so far behind in all my blog reading. First of all, I hear endometriosis SUCKS. I hope the Mirena will help. Sorry to hear it hurt, I didn’t think it hurt but I’ve squeezed out two kids in the past 2 years…I had lots of cramping for 3 days after, but now I’m fine. How are you doing?
GdGYJ2 Your blog is great. Articles is interesting!
Thanks so much for sharing this information. I had heard of endometriosis and as a teenager had my gyn. tell me I might have it… but really didn’t know the extent of what it was. I had the same issues you did… sucky irregular periods, awful cramping, missed school days. My mother had the same issues, so she suggested going on the pill and I refused (not wanting to be a girl on the pill in high school). Once I started college I couldn’t take it anymore. Missing class wasn’t possible. So I’d used the pill all my life until having Zoe. Good luck with the Mirena. Let us know how it goes.
1bKBNJ Wonderful blog.
I love that you posted this. I’ll tell you why later.
I’ve got adult acne as well. But man am I lovin’ that Retin A. As long as I’m the pill of one sort of another my periods are pretty regular. But when I’m off, I can go some months without a period and others with nasty cramping. Which leaves things with me on the pill even though the hubby is more than willing to snip snip.
Hi, Aimee! I just recently found your blog from The Lisa Show’s blogroll…
Anyway, for what it’s worth, I have the Mirena IUD, and I LOVE it. I got mine at my 6-week postpartum appointment (January 2006), so that whole experience was a tad different for me than it was for you. Anyway, I know it’s different for everyone, but my periods have pretty much all but disappeared.
You have a great blog, and I can’t wait to read more! 🙂
Thanks for reminding me about World Diabetes Day (I’m a fellow diabetic)! I happen to be living in London, Ontario (just for this year) only three blocks from Banting House which is going to be lit up in blue on Nov. 14. I’m hoping to get a picture of it.