What do I need to know to get the best help for my long and bloody periods?
April 24, 2010 10:33 PM   Subscribe

Reproductive organs going psycho in my 40s, seeing gyno this week, interested in hearing experiences, getting advice about questions I should be sure to ask.

I'm 44. A few years ago, I started having insane periods: cycles of 21-24 days, with periods that lasted 9-11 days and included sudden gushing hemorrhages that would soak through whatever I was wearing in an instant, and clots as big as 4-5" long. My doctor put me on birth control pills, which managed to stretch my cycles to 28 days but didn't shorten or lighten my periods significantly. About a year ago, we decided to try one of the 91-day birth control pills. The first two 3-month cycles, I had heavy bleeding at random times, and lots of spotting. But toward the end of the 2nd 3-month cycle and into the 3rd, it seemed like things were finally maybe starting to be getting under control.

Until last month, starting about four weeks into the 4th packet of pills, when I had a period that lasted 21 days and again included the insanely heavy bleeding (I was overflowing a Diva cup every 45 minutes some days) and the humongous kitten-sized clots. I started joking that I was having clots so big I should name them and start breastfeeding.

Following this fiasco, my doctor is sending me to an ob/gyn. I expect to be able to work well with him; he's the doctor who took care of me during my second pregnancy and delivered my son six years ago, and I like and respect him.

I have had one doctor in the past suggest I might have PCOS, but have not been conclusively diagnosed with it. The fact that I achieved each of my pregnancies in one month of trying makes me skeptical that I have it; I also understand from what small bit of reading I've done on PCOS that it's more normally associated with light or absent periods. I have a bleeding disorder (ITP, low platelets, which, ironically, makes me slow to clot and stop bleeding) but there's apparently no clear research evidence that ITP is linked with heavy periods.

In case it matters, this last 21-day Period From Hell included a migraine-like headache that lasted about 9 days, and anxiety (which I'm predisposed to) that bordered on panic-attack level for about the last week.

I am curious to hear other women's experiences with this kind of thing, what the cause turned out to be, and what eventually helped. I'd also like to get some suggestions of questions I should be sure to ask the doctor when I see him. Are there things doctors commonly overlook when dealing with something like this? Things they commonly suggest, that I should ask certain smart questions about? Anything they commonly suggest that I should not waste my time with? Anything that might not seem immediately related to psycho periods but that turned out to be related for you? I feel uneducated on the subject and I don't want to come out of the appointment without getting the information or help I need.
posted by not that girl to Health & Fitness (22 answers total) 10 users marked this as a favorite
Recently, one of my close family members was diagnosed with PCOS. She has many of the symptoms you describe: exceedingly heavy periods and short cycles, huge clots, headaches, etc. On the other hand, I have also been tentatively diagnosed. My primary symptoms are exceedingly long cycles with highly irregular periods and spotting.

From what I understand, PCOS is often diagnosed by ruling out a number of other medical issues because its symptoms cover such a wide range (and difficulty getting pregnant is often, but not always, one of those symptoms).

Please also have your doctor check your iron levels; long-term anemia can cause fairly severe hair loss that will take months to recover. You may need to go to a dermatologist for this... try to find one that believes hair loss in these situations is a medical -- and not cosmetic -- issue.

I'm so sorry you're having to deal with this! It sounds incredibly frustrating.
posted by divide_by_cucumber at 10:56 PM on April 24, 2010

I've been there. This article was the most helpful general resource to me in the early stages of trying to get a diagnosis. In my case, I wish I'd requested a full thyroid panel (including TSH, T3, T4, and thyroid antibodies). As you can see from the linked article, there are a lot of health problems associated with this kind of dysfunctional bleeding so note any and all symptoms you've been experiencing, including frequency. Start keeping a daily diary if you can, noting each day of bleeding and its severity, other symptoms, and weight fluctuation if any. The more information you have to give your doctor, the more apt you are to get the correct diagnosis for you. I'm sorry you're going through this; take care, and best of luck finding answers.
posted by melissa may at 11:23 PM on April 24, 2010

what eventually helped

Mirena. Oh good Lord, I love it.
posted by The corpse in the library at 11:58 PM on April 24, 2010

A coworker of mine was suffering from a never ending period - it went on for over 3 months. It turned out to be severe fibroids. After her surgery she was much improved. I'm assuming that your gyno has checked for these, but if not, it's worth a look.
posted by The Light Fantastic at 12:28 AM on April 25, 2010

I had trouble with heavy periods and clotting. It doesn't sound like it was as bad as yours, but I did keep a change of clothes in my office and once went to the on-site infirmary because I thought I was hemorrhaging. I was getting anemic.

I had an intravaginal ultrasound to check for fibroids. Apart from a really thick endomertium, there wasn't anything that appeared unusual. I couldn't take hormones (the pill) because of prior medical conditions.

Had a D & C to start which gave me some relief for a couple of months, but the problem started up again. The next step was an endometrial ablation which worked a charm. If it hadn't worked, I'd have had a hysterectomy.
posted by angiep at 1:18 AM on April 25, 2010

Have you had your thyroid checked?

Hypothyroid is very common and can cause heavy periods.

When my mother had insanely heavy periods a few years ago, she was helped by treating her hypothyroid and taking a drug called prometrium.

Heavy periods can be related to menopause or premenopause. I don't want to write pages about the menstrual cycle, but to simplify it, a drop in hormone levels causes you to get your period, and rising hormone levels cause your period to stop. So if you have low hormone levels, you may not stop bleeding the way you used to. That's why taking birth control pills is a good thing to try--but obviously it's not working well enough.
posted by Violet Hour at 1:48 AM on April 25, 2010

I had the same kind of problems as you're having, and after several go-rounds of different hormone-based treatments which didn't help much, the next stage would have been the ablation angiep refers to, but I decided to get the whole thing over and done with and I had a hysterectomy. It was the best decision I could have made. But I've heard great things about ablation too and I know the results can be fantastic. It just wasn't for me.

When I saw the surgeon at a follow-up, I asked if they'd found anything abnormal. He said that there were pre-cancerous cells on the outside of the uterus that wouldn't have been caught in a smear test or an ultrasound (I'd had several of each), and so the decision not to have more treatments over the next few yeas but to have the hysterectomy probably saved my life. (This is just my experience, I'm not saying that this is what is going on with you.)

It wasn't until about a year after the op that I realised how well I felt and how I'd lived with feeling unwell for so many years. I feel for you - I could cope with the clots but the flooding was awful and always unexpected. They had to close the pool once when I was having a scuba lesson. One of the instructors joked afterwards that he thought a shark had found its way into the pool and chewed through my leg, there was so much blood.

Best of luck.
posted by essexjan at 3:32 AM on April 25, 2010

One question you might ask is whether taking birth control without breaks (ie, Never taking the placebo pills) is something the doctor might recommend. I had a friend with heavy bleeding and horrible migraines related to her short cycles, and bcp lengthened the periods, but still left her with the other symptoms. The ob/gyn finally told her she could simply not take the placebo pills ever, and basically never having a period has worked for her.
posted by ldthomps at 5:10 AM on April 25, 2010

I had massively heavy periods as well. I got a D&C and they put a Mirena coil in while I was out so I didn't feel a thing. Now I don't have periods at all and it's heaven. Like the corpse in the library, I love my Mirena.
posted by hazyjane at 7:17 AM on April 25, 2010

I have PCOS, diagnosed as a teenager. Before I was 30, this meant almost never having a period naturally, and when I did, it was so light it was practically non-existent. I've been on the pill since I was 18. Most of the time I could pretty much get away with pantyliners, and never had cramps.

After I turned 30, things went haywire. A few months ago I went off the pill because I couldn't stand to have a regular period. I know what you mean about the flooding. Yeah, through the overnight protection, through a pair of shorts, and puddling on the floor...while at work. (Charming.) And it's not even period-like anymore, is it, it's just bright red BLOOD. POURING. OUT for 10-12 days. And I swear to god I go into labour, with the urge to push and everything. I'm sure my liver is ticked off with me for all the advil and aleve I take, but the cramps are crippling. I got severely anemic about a year and a half ago and now I've learned my lesson and take pallifer (2X the recommended dose) as soon as I start bleeding.

People would tell me if my periods were so heavy I should go on the pill. No one knows what to say when I tell them I'm already on it, and have been on it for years. In the last couple of years I had breakthrough bleeding mid-cycle, periods that failed to stop all month, and periods that lasted twice or three times as long as they should.

Finally I just stopped taking the damn pill in the hopes that my PCOS would kick in and stop me from ovulating/having a period at all so I could recover. First there was a month of fairly mild bleeding. A pause, then a light period. Another, longer pause, then INSANE CRAMPY BLEEDING. But, strangely, shorter. Rather than 10 days, it was reduced to 4, and 2 of those days the bleeding was minor. Being on the pill, I thus discovered, seems to have been making it worse: way bigger clots, way more frequent longer periods, more crazy flooding. I still have insane bleeding, but it doesn't last as long, and I haven't had puddles on the floor again, so it might be marginally less heavy.

I have no thyroid anymore, so I'm on complete thyroid hormone replacement and its success is frequently monitored, so it's not necessarily a thyroid problem. (The crazy bleeding started before they took my thyroid out, fyi.)

I had an ultrasound in the middle of all this, no fibroids, no cysts.

I don't know what the heck is going on, but I'm going to press my doctor about it next week. Wanna memail? Maybe we can trade advice.

In my experience, no one takes this all that seriously. I've been complaining about it for years now, but my other issues (thyroid cancer) keep getting all the spotlight. One of my doctors actually noted in my chart that my heavy periods were "solved". They seem to really hesitate to wade into this one.
posted by Hildegarde at 7:19 AM on April 25, 2010

Ask to have an ultrasound. My doctor messed with by BC and took the wait and see approach for about a year when I was having periods like yours (some lasting six weeks, massive clots, etc). I started having other symptoms that she blew off, before I finally demanded an ultrasound. I had massive fibroids. Endometriosos can also cause your symptoms.

An ultrasound is easy, and not overly unpleasant, and can quickly see if there are obvious problems.
posted by kimdog at 7:23 AM on April 25, 2010

Forgive me, everyone, for asking what may sound like an obvious question, but --

A lot of people are suggesting things like PCOS and hypothyroid; but wouldn't those things have been ALWAYS the case? It sounds like not that girl didn't start having those insane periods until just recently, but for the first 40 years of her life (well, 30, if you rule out the prepubescent part) things were more normal. If it were her thyroid, wouldn't her periods ALWAYS have been this nuts?

That's actually a good question -- not that girl, can you confirm that before this, your periods were in fact more normal?
posted by EmpressCallipygos at 7:36 AM on April 25, 2010

If they just put you back on birth control, get a second opinion. Be prepared to get a second opinion anyway.

Additionally, if you have fibroids or need surgery for another reason, LOOK AROUND. There is a huge variety of skill levels between surgeons. A good ob/gyn might not be a good surgeon. Don't feel like you have to use your ob/gyn for your surgery.

Get a second opinion if possible! I always think this for anything this severe, though.
posted by internet fraud detective squad, station number 9 at 7:37 AM on April 25, 2010

Also, really, we can't diagnose you with anything, we can't even see what's going on inside with an ultrasound wich is pretty important...so keep an open mind!
posted by internet fraud detective squad, station number 9 at 7:38 AM on April 25, 2010

If it were her thyroid, wouldn't her periods ALWAYS have been this nuts?

No. Thyroids aren't necessarily bad from the start. Just because you're not hypothyroid now doesn't mean you won't become hypothyroid later in life.
posted by Hildegarde at 8:32 AM on April 25, 2010 [1 favorite]

Additionally: I have PCOS, and, as I said, you still have changes in the way things present. Getting older changes things. Hormones are funny that way.
posted by Hildegarde at 8:33 AM on April 25, 2010

I'm in the middle of what you're talking about and I'm still trying to get a diagnosis too, so this might not be much help.

I get ovarian cysts but the doctors don't think I have PCOS. I've been told that the women who suffer from PCOS tend to have problems with being overweight and things like dark facial hair, and have really irregular periods. I am usually like clockwork with my cycle (except when I have a cyst and even then I'm only off by a few days), and since I'm underweight and don't have a problem with a mustache the doctors I've seen really don't think I have PCOS.

My periods have been just like yours since just a few months after I had my youngest (now two). When I delivered him I hemorrhaged and had to have a D&C, that gave me really great periods for just a few months, but then things went haywire. I'd always had heavy periods, but they seemed to get a little better after my first baby. The 'kitten sized' (great analogy btw) clots would come occasionally after my second, but now come every period after my third child. Birth control pills make me incredibly sick and I have a split uterus so I can't do an IUD, so those things can't be causing my problems.

Like I said I'm right where you are with trying to find a diagnosis, so I'm watching this question very carefully. I just wanted to tell you about my experience and wish you all the best in getting healthy.
posted by TooFewShoes at 8:41 AM on April 25, 2010

Hypothyroidism actually most commonly emerges in middle-aged women and age of PCOS onset varies. My dysfunctional uterine bleeding and other symptoms of thyroid disease started soon after I turned 30.

I agree with Hildegarde that some practitioners fail to take this seriously; I think it's often perceived as a minor quality of life issue with perhaps some implications for fertility if you're premenopausal. But when it's your quality of life that's being fucked to the tune of 20+ days of heavy bleeding a month, good luck being so blasé. Seriously, there so many things that could be happening here -- I can't emphasize enough how important this article was to helping me contextualize the issue, especially the information in Table 2 about differential diagnosis. You may have to fight rather hard for a diagnosis if the actual cause is not immediately apparent, so my sympathy to anyone dealing with this.
posted by melissa may at 9:24 AM on April 25, 2010 [1 favorite]

Response by poster: Empress, for most of my adult like I had normal periods on about a 31-day cycle. I had a brief go-round with weird periods between my two kids, IIRC, which a short course of birth control pills seemed to help.

I've had all the various thyroid things checked, repeatedly, and I am indeed anemic and taking iron for it. I haven't had an ultrasound; I've been kind of expecting the ob/gyn will want to do one.

It does help just to know I'm not the only one dealing with this stuff.
posted by not that girl at 9:33 AM on April 25, 2010

Response by poster: Thanks for that article, melissa may. It looks very useful.
posted by not that girl at 12:21 PM on April 25, 2010

Chiming in to nth fibroids. A female relative of mine had symptoms identical to yours, down to the migraines, that were resolved after they located enormous fibroids and did a hysterectomy. She was also later diagnosed with mild hypothyroidism and fairly bad hyperparathyroidism; they never did anything with the thyroid but she ended up having her parathyroid out a few years after the hysterectomy happened. I don't know if the (para)thyroid issues were related to the fibroids or not. I think they found out about the parathyroid stuff because her blood calcium levels were way out of whack - it may be worth getting those checked out.
posted by athenasbanquet at 7:08 PM on April 25, 2010

nthing Mirena. I saw your latest question and, I know you've already decided for hysterectomy, but thought I'd put my 2 cents in.

My periods were ridiculously heavy. There was no such thing as a continuous commute to work for me, for example. I had to stop 3 times to go take care of things. That's three times in an hour, using one or two tampons-- at once! yeah, I know-- plus a pad. I resisted getting the IUD, but after a clot so large I thought I'd had a miscarriage, I felt like I had nothing more to lose.

Mirena is probably the one item marketed for menstruation where a commercial with women twirling on beaches in flowing white dresses would be accurate. It's changed my life that much.

I don't know much about hysterectomy, except having watched my mother who seemed to have *a lot* of struggle with hormones after hers.
posted by avidreader at 1:55 PM on May 2, 2010

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