Friday, October 12, 2012

Overshare: Google Diagnosing Dysfunctional Uterine Bleeding

EcoYogini overshares in the hopes that she is not alone...
(me three years ago, pre yoga class near the atlantic ocean...)

After six years of resisting I just google-diagnosed myself with DUB.

*Warning, this post is an overshare in the hopes of opening pathways for discussion and sharing. Too often women don't talk about these things, resulting in feelings of aloneness and hopelessness*

Because my OBGYN sucks, the internet tells me that I'm probably a weird combo of ovulatory DUB with the anovulatory symptoms. Yay special!

Let's back track seven years down uterine memory lane:

Seven years ago, mid to end of my Master's degree at the age of 24 (ish) I began experiencing mid-cycle spotting here and there. I went through a few bloodwork tests, but student health care as it is, kinda chalked it up to stress and let it go.

Fast forward two years and my 'here and there' spotting was becoming a regular occurrence. More bloodwork (which I hate btw, taking seven vials of blood from someone who feels nausea at the insertion of a needle isn't fun), ultrasounds and a diagnose that something was up with my cervix the options given were:
1) go off the birth control
2) IUD
3) live with it. (nice eh? that is actually what she said).

Two years after that it was so bad that, with the support of my husband, I decided to go off the birth control pill.

Three years of no birth control pill and my cycle now resembles: 6-8 days of no period, 2-7 days of spotting, 7-10 days of full period. It's awesome. Hmm. Seems I was misdiagnosed.

Over the past seven years I have become an expert on the DivaCup. That invention has saved me boatloads of money and made this situation so much more bearable. 

It took almost 2 years of brow beating my family physician that maybe a referral to an OBGYN, some bloodwork and ultrasounds might be beneficial. You know, in case I had a cancerous tumour. She only listened when I mentioned I might want a baby one day. Who cares about the fact that I have the most effed up periods ever. The bloodwork and ultrasounds (external AND internal) took about 5 months to get done while an appointment with the Gynecologist took 6 months.

Wouldn't you know all the tests came back normal. Yay no cancer! So, another procedure that was terrible, invasive and hurt like hell (mostly because I am a big baby with the pain tolerance of 0 and a tilted uterus) and big fat tears quietly ran down my face the entire time, was where they dilated my cervix, inserted the camera and inserted a saline solution to check for malformations in my lining. Zilch. Woo. #Neverdoingthatagain.

So my follow-up appointment in September resulted in a conversation that went like this:
OBGYN: "So... everything looks normal. I'm not sure why this is happening to you. I don't know what else I can offer you."    Awesome.

My new options that are not even guaranteed to work:
1) IUD (not recommended since I want to get pregnant in a year and it will be as painful as the Terrible Procedure... AND it might not work)
2) birth control pill (tried every company out there, they don't work).

Do you think she'd give me a label or reason for why this is happening to me? I only got the term 'unstable uterine lining' out of her, which was enough for Google. According to Google I have 'Dysfunctional Uterine Bleeding' or DUB. There are a variety of reasons of DUB, which I don't really fit most of them because mine has been so long AND I ovulate (whereas the majority don't).

I really didn't want to Google my medical diagnosis. I believe in the Health System. I believe in the fact that certain medical professionals (NOT my family doc, she is terrible) have advanced knowledge on how to interpret and diagnoses medical and evidence based information. Now I see that unless I want to go invasive (ablations, C&D, hysterectomy...wtf??), I'm stuck with this. Even pregnancy won't fix it.

I write this post as on day eight of my Yasmin generics, I discover I am spotting, that Yasmin has a lawsuit against them for 3x more at risk for scary blot clots causing serious health damage and I received a follow up appointment letter with my OBGYN.

My Plan:
1. Cease the birth control pill tonight...mid month-three. I have tried every single brand under the sun, I don't want blood clots and none of them worked anyway. Eff that noise.
2. Make an appointment with a Naturopathic Doctor tomorrow. Whatever if the OBGYN thinks I'm crazy, she couldn't give me anything and it's covered by my insurance.
3. Write this blog post so other women who are also experiencing this in their twenties and early thirties don't feel alone and scared... like I do.

17 comments:

Nicole said...

I'm so glad you're going to a naturopath! Mine changed my life. Literally. And I have always suffered the same symptoms as you. It takes time, but a good ND will treat your whole being, not just your uterus.

AshtangaYogaEcstaticAdventures said...

I LOVE OVERSHARING! Especially when it comes to menstruation. Sorry you have to go through all this bloody shit... Sounds like a drag. I hope that the naturopath and/or pregnancy helps. All the best, Erica. xo.

Stephanie B said...

Wow, not fun at all, but if it helps, I went through something very similar and got very much the same response from doctors. Over the span of a few years, my periods reversed themselves so I was 3 weeks on, and one week off (if that) and they were *heavy* to the point I was dangerously anemic. Multiple doctors visits to be told conflicting things (it's birth control, it's not, it's your weight, it's got nothing to do with weight, etc) and told i'd probably have to live with it. Until finally my blood pressure got so low I passed out at work, ended up in the emergency room and had had enough. On a tip from a co-worker, I actually lied my way into an appointment with a specialist and kept on him until an ultrasound was done... hey, whaddya know, huge uterine fibroid! It's easy for them to say you'll have to live with it when it's not *them* having to live with it... it's tough but keep trying, *someone* somewhere will be able to find something that helps!

Brooks Hall said...

Yes! Yes! Yes! Thank you for sharing this. Let your truth be heard!

Vegan Burnout said...

I have wacky cycles myself, and I hear you on the DivaCup being a lifesaver. When I started charting my cycles and realized that something was up, my first reproductive endocrinologist (RE) told me I had PCOS despite not having many of the symptoms. Basically, I don't ovulate on my own (problem when trying to get pregnant). Anyway, I broke up with her after a year of feeling like I didn't matter and got a new RE. We're still trying, but I just want to 1) high-five you for taking charge of your health and 2) give you a hug because I know how scary it is to not know why your body won't work as it should. Bright blessings!

Cathi said...

You are very brave. Thank you for being brave enough to overshare....although when it comes to our health, is there such a thing?

Anonymous said...

Thank you for sharing. My periods are getting worse and worse. I tried going on the pill, and that was horrible. I had spotting, then a full period, then more spotting. Overall, I had some kind of bleeding for 30 straight days. I got off that and am waiting to see how this next post-pill period is.
I hear ya on the DivaCup. I LOVE mine.
When it comes to female health, there is no overshare.

Anonymous said...

Wow. My OBGYN was upset with me that I let between period spotting go on a year. Earlier this year, I had a uterine cyst removed. The surgery (D&C) was not fun but it solved the problem 100%. The thing was that cyst was an unusual shape so it did not show up well on the utrasound. Good luck. Keep searching for a doctor who will listen to you.

--Ave

docsage said...

I'm so sorry you are having these issues. I'm an acupuncturist and have treated women with issues like this. My suggestion is to check out acupuncturists/Chinese medicine practitioners in your area and see if you can find one that works with GYN issues. Chinese medicine is not the be-all-and-end-all, but it does provide some great solutions to problems that conventional medicine either don't diagnose or can't treat. Good luck to you.

Five Seed said...

Go, Lisa! I think you are on the right track. You've inspired me to think about checking into a naturopath, as well for my mouth problem... I need something other than, "I don't know what the problem is. Here are some antibiotics. Let's see what happens." When your health problem begins to run your whole life, that is NOT an acceptable answer!

I hope you will keep us posted. I'll keep you in my thoughts!

Eco Yogini said...

Thank you everyone for such kind words of encouragement and love! It's been so powerful reading different women's experiences and stories- hopefully we'll keep sharing!

My appointment for the ND has been made today for a few weeks from now. Fingers crossed!

Betsy (Eco-novice) said...

I am so sorry you are going through this. Medical mysteries are no fun. My sister has had a lot of health issues and really believes in combining western and eastern medicine -- she loves her naturopath and goes to her when western medicine just has no answers for her. Her issues have been more with diet and immune system, but I say tap the wisdom wherever you can. Although, honestly, it can be confusing to be getting diagnoses and opinions from different and sometimes contradictory sources. In your case, I think it's at least worth a try -- as long as the proposed treatment isn't too crazy, probably worth a try, no?

Faye Dewell said...

OMG lady, you are currently describing my reality (as in the evolution of my cycle over the past 3 years) and I'm trying to get preggers right now (I ovulate and am fertile) and coming up with nothing but roadblocks in the medical system. It's driving me crazy. It's good to know that I'm not alone because no one seems to know what has caused the change.

I've been debating going to a naturopath but keep second guessing the idea that it'll make any difference. But at this point it's starting to feel like I'm going to eventually end up bleeding all month if things keep going as they are!

Eco Yogini said...

@Faye: holy crap!! i am so glad it's not just me!!! I completely hear you on the ND, I have no idea whether it will help, but eff it, if she suggests anything too bonkers i just won't do it... and it'll cost me an hour of my time.

i'm also curious, cuz my GYN said i wouldn't have any problems in the future should i want to get pregnant since I'm obviously ovulating, but i just can't help but wonder how that can be the case since obviously having 100% menstruation symptoms MID cycle and END cycle isn't a good sign either.....

Rita said...

I agree with docsage about trying acupuncture/TCM or Ayurvedic medicine. I have experienced similar issues to you (bleeding for 6 months straight, b/c pill not working, hell-ish cycles for over 8 years) and tried a number of naturopathic doctors/western herbalists with no effect. I see a great TCM practitioner now who uses herbs, acupuncture and also incorporates Ayurveda and it's the first thing that has helped in 8+ years of trying. I suggest reading Sara Avant Stover's 'The Way of the Happy Woman' and Claudia Welch's 'Balance your hormones, balance your life', both of these books gave me a good background understanding and made me feel confident to pursue TCM. Best wishes.

Faye Dewell said...

@Eco: In theory we shouldn't be having problems but I'm finding charting to be very challenging because I can't get a clear read on things. Temperatures, cervical mucus, ovulation prediction sticks. There seems to be no consistency in any of it. Bah, it's just taking the fun out of it!

Because we haven't been at it for over a year, I constantly get dismissed by the doctors because it hasn't been long enough. I'm not too worried about the baby thing, it'll come or it won't, but I'm really confused by what my body is doing. I don't understand what has changed and no one seems to have an answer.

Definitely going to look into some of the recommendations on this thread though. Thanks for opening a conversation thread! Overshares are always very helpful! :)

Anonymous said...

I don't have issues while on the birth control pill...but off it my ovaries are a mess. Hello PCOS. Thankfully, I had no trouble getting pregnant. But it's uber scary when you are in pain and stressed and the dr. tells you that if it was just cysts you wouldn't be in so much pain...(hello male gynie..you must know from experience). It's frustrating, scary and some people just don't understand! It's hard to overshare but honestly, how else would we inform ourselves? I trust the medical system to an extent (I work in it)...but I know from experience you have to ask the right questions. Or at least ask questions! Asking google a question works too! :)

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