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My guts hate me. I hate them back. Help us get along?
April 5, 2011 10:37 AM   Subscribe

I'm going to have health insurance in the near-ish future and I need to know what to ask a doctor so they take my debilitating menstrual cramps seriously. (not for the squeamish)

Every period I've ever had has at least included one day (and usually three) of painful, stuck in bed, need to change a super tampon every 20 minutes to an hour, but it hurts so much to stand up that I'll just sit here and bleed into the toilet while I catch my breath, horror show. The cramping is not isolated to my pelvis, but includes my thighs and spreads into a burning in my mid/upper back, even when I've taken NSAIDS for three days prior to begining of my period.

Yesterday I engaged in a very moderate physical activity for an hour. Came home, got in bed, and have only gotten out to pee and tampon (damn you ob for taking away the ultra). My fiance has gone to work and left me a cup of water on the bedside table.

I take calcium, I do the oil, I eat less meat on the days leading up to my period, I've started running 45 minutes 3 days a week a few months ago.Prior to that I was biking ten miles a day and/or doing Bikram yoga. I drink plenty of water, and I eat lots of fruits and vegetables. I am not anemic, in fact I am able to give blood at any time (and I give platelets, which impresses the blood center workers every time.)

And I'm tired of doctors telling me, "well, that sucks" or "this is just the way your body deals with menstruating." I'm old enough now to know that these statements are true, but not the whole story.

More about me: I definitely want to become pregnant, so ablation is probably not the answer right yet, but I have heard of a condition where endometriosis is so severe the uterine lining spreads to other organs. I'd like to get checked for this, and otherwise receive some real answers about what I can do.

Bonus grossness - my period is always "chunky" with clots (I guess), some as big as an ob tampon. They adhere to the tampon and slide out when I remove it. Doctors have never cared to investigate this in the past, but my lady friends suggest this is not normal.

Again, I'm not anemic. And while I get that lots of people would love to have a day in bed, these are not the circumstances I would choose for a "respite."

I did try several birth control methods in my teens and early to mid twenties. Every pill we tried was a mess of terrible side effects (months of nausea and strange food aversions - I still can't eat some things because of the texture or smell that revolted me on the pills). Depo-provera is awesome, but after 7 years I cannot go on it again because of bone density problems. Because pregnancy in the next year or so is desirable, and because of the side effects, I'm ruling out hormonal birth control for now.

Which brings me back to my big question. What do you say to a doctor to get this issue taken seriously, and looked into?
posted by anonymous to Health & Fitness (28 answers total) 3 users marked this as a favorite
 
The answer is to find the right doctor... my cramps are very severe, but not as severe as yours, and I just had to say that and my doctor has been incredibly pro-active in finding solutions -- I now have special pain meds plus I only get my period when I have breakthrough bleeding on the pill (roughly 3 times a year), very supported and recommended by my doctor. If your doctor does not take you seriously, find a new doctor.
posted by brainmouse at 10:40 AM on April 5, 2011


Let's see... I went to 5 or 6 doctors in 2 years with symptoms of endometriosis back in my 20's... at least 2 general and 3 OBGYN's... I think the 6th doctor diagnosed me (the rest blew me off)... 5 minutes later I was getting a quick ultrasound to confirm the presence of cysts (he had a machine in the office)... 2 weeks later I had a laparoscopy and a little laser surgery. And that was that!

I believe I was finally diagnosed because I finally ended up in an office with the technology to see the problem quickly. My OBGYN actually did the surgery, so he had those skills, too.

I suggest you go to a good teaching hospital clinic (UCLA!) or someplace similar where they will be able to diagnose you with the right equipment on the spot.

Also. Try seeing a female doctor.
posted by jbenben at 10:49 AM on April 5, 2011


Print out this question, take it to your doctor, and have the doctor read it in your presence. Your period is interfering with your quality of life and that is reason enough for a doctor to take it seriously.

If you ask a mod to update with your location and a throwaway email address, someone here might be able to recommend you a doctor who will really work with you on this. There are doctors who are dedicated to their patients' health and recovery and doctors who will only give you five minutes of attention once a year. Unfortunately you can't always tell the difference until after you've visited with them.
posted by Metroid Baby at 10:52 AM on April 5, 2011 [3 favorites]


It isn't clear from your question, but are you dealing with a general primary care doctor or an ob/gyn? If you haven't seen one yet, definitely ask for a referral to a gynecologist. Another thing that might help is if you can drag yourself out of bed on one of the especially bad days and see your doctor. I finally got a referral and some serious pain medication when I was seen on a day that I had trouble breathing because the pain was so bad.

I am so sorry you're going through this. I've been dealing with something similar (minus the clots, plus pain between periods) for a while and the it is seriously messing with my life. I've been doctor-hopping a lot, and I now have an appointment at a clinic that has experience dealing with endometriosis patients. If the gynecologist you see thinks you have endometriosis doesn't have experience with it, I'd recommend googling a bit for endometriosis or pelvic pain specialists in your area.

Endometriosis (with no cysts) is notoriously difficult to diagnose - the only real way to know is with laparoscopic surgery, but it seems that gynecologists often make a diagnosis based on a health history and your symptoms. The treatment for it varies, but can be anything from pain management to serious hormones to plain ol' oral contraception. I hope you can avoid the hormones, since that's what you'd like to do.

Even if you don't have endometriosis, I've found that websites about endometriosis have been helpful in terms of ideas about pain management and support. I've found a lot of good information from this website.

I hope you get the help you need!
posted by SugarAndSass at 10:55 AM on April 5, 2011


Ask about fibroids also, they cause heavy bleeding and pain.
posted by L'Estrange Fruit at 11:04 AM on April 5, 2011


Make sure you're seeing a qualified ob/gyn that regularly performs surgery. Surgeons tend to listen more closely. These can be serious symptoms, and there are interventions, both surgical and non-surgical that can make your life significantly better.

Upstream, Metroid Baby recommended that you print your post out, take it with you, make them read it in front of you. I heartily recommend this action. I've started doing that with a fair number of medical professionals, just because once I'm there, I'll often forget to mention something...but if I have it all typed up and ready to go, it speeds things up.

Also, anecdotal; I have always had the best luck with female ob/gyns.

Please see a surgical ob/gyn as soon as you can, you shouldn't have to live with this discomfort.
posted by dejah420 at 11:06 AM on April 5, 2011 [1 favorite]


Screening criteria exists for whether dysmenorrhea (painful periods) are worth treating or not and one thing every doctor will ask is whether you miss work because of it. That is a big red flag for them that it's worth treating. Also, you don't need to insist on a particular treatment, but you do need to be firm about the fact that it needs to be treated.

I had the best luck (after talking to MANY doctors) about this when I went in ready to ask about specific options.

Are you taking a high enough dose of NSAIDs? I'm a pharmacist and I can tell you, you'd be amazed at how high a prescription dose of ibuprofen (Motrin, Advil) can be. Tylenol is not an NSAID, and you never want to take more Tylenol than it says on the bottle. Ever. But the primary problem in dysmenorrhea is overproduction of prostaglandins, and that's what the NSAIDs inhibit. And you can take Tylenol + an NSAID at the same time since they are different. But there's a reason a prescription dose of an NSAID is a prescription dose - you really need to talk to a doctor about it.

Have you tried hormonal birth control? The Mirena IUD was actually awesome at controlling my pain. I'm the kind of person who gets way too depressed with even a tiny amount of hormonal birth control, so I had to have mine out, but it works for a lot of people.

Ask about laproscopy to check for endometriosis too. And ask about fibroids.

I've also heard of people having success with a different NSAID, Ponstel (mefenamic acid). Good luck and hang tough! I know it sucks.
posted by selfmedicating at 11:14 AM on April 5, 2011


(sorry to derail- but the ob supers still aren't on the shelves? can someone please confirm this? because here in france they still are under the product name "nett" .... I guess I'll be picking up more before I go home)
posted by raccoon409 at 11:15 AM on April 5, 2011


Also. Try seeing a female doctor.
Also, anecdotal; I have always had the best luck with female ob/gyns.

Whereas I've had two now, who've said the equivalents to "Well, MY body doesn't do X, so you should just tough it out." (We were discussing my reactions to various types of birth control pill, not periods.) Now I don't care if they're male or female, so long as they don't pull that shit.
posted by small_ruminant at 11:18 AM on April 5, 2011


Please shop around for a new doctor. There is absolutely no way that a dr should be shrugging his or her shoulders when it comes to your period interfering with your life to this degree. I struggled with painful periods and my dr immediately ordered a test to check for endometriosis. In my case, this was also tied with some difficulties conceiving, so the test was kind of a 2-in-1 procedure. Make sure to mention your fertility concerns because that will give the dr more info to work with.

I agree with printing your question out and showing it to your doctor. it's always a good idea to write down questions and talking points, because medical appointments have a way of erasing stuff from your brain (usually because docs tend to be in a hurry, and that sense of urgency can transfer over to the patient).

I also agree with looking for a dr at a teaching hospital. All my doctors are at a local teaching hospital and they have all been great about chasing down reasons for any problems I'm having. The facility has great resources and it's unlikely that you will need to be sent somewhere else for procedures, consults, labs, radiology, etc.
posted by DrGirlfriend at 11:19 AM on April 5, 2011


And re: female vs male, in my experience that has not mattered. My most responsive drs, regardless of sex, have been at this teaching hospital.
posted by DrGirlfriend at 11:19 AM on April 5, 2011


If you have PPO insurance, try to get into an OB/GYN at a MIGS clinic (Minimally Invasive Gynecological Surgery). These are specialists in infertility and issues such as PCOS, endometriosis, etc.

I saw one after months of pain after a c-section when the OB who performed it blew my concerns off as normal. The MIGS doctor was the best thing to ever happen to me as she diagnosed my problem and got me on some medication that did the trick (and that my former OB should have had me on as soon as I expressed the concerns I did).

If you don't have PPO insurance, try get a referral to one of these types of clinics rather than a regular OB. If you are at all in the Boston area, I would be happy to send you to the doctor who saw me.
posted by zizzle at 11:21 AM on April 5, 2011


The most brutal gyno I ever had was female. Gender is less important than that they listen to you, take care of you, and you are comfortable with them.
posted by L'Estrange Fruit at 11:25 AM on April 5, 2011 [3 favorites]


I've had the most response to medical complaints when I don't sugar coat it AT ALL. Don't merely say that "I have bad cramps and heavy bleeding." Don't throw the word "sometimes" in there.

Use words like "debilitating," "interferes with daily functioning," "frequently/constantly miss work," "can't stand up," etc. And make sure you're not presenting it as a once or twice occurrence, instead make it perfectly clear that this happens ALL THE TIME.

This is not just some side complaint. Do not present it as such. (I'm not saying that you are)
Just be very very clear and adamant that going through this is debilitating and very clearly tell them that you need help.

If printing this question out helps you do that, then do that. Either way. . . .be clear.
posted by Sassyfras at 11:40 AM on April 5, 2011 [4 favorites]


Yes to seeing an ob/gyn specifically. I've had one male MD, a female NP and a female PA, and none of them have really made more of a difference than another (though the guy was actually really nice about the ridiculously cold room). Some people find that men are more thorough because they want to cover all their bases; others find the opposite.

Use "statistics" that you've charted, like Sassyfras says above. What's the duration? What are the common times you get them? How big are the clots? Etc. etc. Whether you're embarrassed or just want to get a clear summary of what's been going on, writing it out can be a huge help. You might see some patterns that you haven't noticed before.

Because you don't have a throwaway e-mail, I'll also put my two cents in for the things that changed my life. The first is the Diva Cup, which I imagine could be a lifesaver for you given your flow's frequency and volume. I and others have actually experienced fewer cramps while using it, but even if that doesn't happen for you, it's awesome knowing that 1) you don't have to throw tampons away and 2) you can reposition it until it feels better (which was a total pain, literally, when I used tampons). Oh, and 3) it holds quite a bit more than even an ultra tampon, AND it would probably be super helpful to you when you talk to a doctor because it includes little measurement lines on the side of the cup. So you can say, "Yeah, my flow is at 1/4 oz per hour" and your doctor can respond accordingly.

The second is a Mirena IUD. I know you said you wanted to have kids in a year or so, but the Mirena should be just fine for you because its effects wear off as soon as you remove it -- which can happen at any time. It has just enough hormones to NOT mess with your mood, etc., even if you have a history of mood disorders. The only thing it did was clear up my face a little. I had absolutely horrible times with other forms of hormonal BC, and this was so amazing.

Specifically, my female ob/gyn PA told me her own story, which was that she had fibroids/flow so bad that she couldn't go scuba diving like she loved to do. She's now on her third or fourth Mirena and couldn't be happier.

So... bottom line is that you shouldn't stop saying something until you're sure you're being listened to, and yes, write it out.

And I'm not an expert on any of this stuff, but please feel free to MeMail me if you'd like some resources near Madison, WI or just want a friendly, confidential ear.
posted by Madamina at 12:17 PM on April 5, 2011


sorry to derail- but the ob supers still aren't on the shelves

OB sizes used to be Regular, Super, Super Plus, and Ultra.

Ultras were the shit, and they are gone. Fucking assholes. All the rest are back on shelves, though.
posted by peep at 12:30 PM on April 5, 2011


If you're in Los Angeles and willing to drive to Pasadena, I have an awesome doc: Dr. Laura Sirott, who works out of Huntington Hospital.
posted by ApathyGirl at 12:31 PM on April 5, 2011


Piping up to second Madamina's recommendation of a menstrual cup. I personally use the Lunette, and couldn't be more delighted.

It was totally intimidating at first, because my klutziness is sporadic but legendary, and I just knew it would kick in at the most inopportune time. But I acclimated to the use of the cup really quickly, and my cramps have since been knocked down from "kill me now" to "bleh," which is pretty great.

Another benefit: tampons tended to dry me out by the end of my period, which made insertion and removal particularly painful.

Taking in a sample of a clot could be very helpful to the doctor, and using a menstrual cup would make that process very easy.

If by any chance you're in the suburbs west of Philadelphia, I'd be more than happy to help and/or make doctor recommendations over MeMail. I love my OB/GYN. She's incredibly nice, no-nonsense but kind, and just an all-around awesome woman whom I admire greatly. She would definitely, definitely, DEFINITELY listen to you and take your concerns very seriously.

Good luck.
posted by shiu mai baby at 12:47 PM on April 5, 2011


Call around. Ask for an informational interview or appointment with the doctor, which many will do. (There may be a charge.) In my experience ob/gyns have been a bit more open to this than GPs, but I've done it with all my doctors for the past five years since I had a really, really bad match with a GP.

And then you say, "I have really terrible menstrual cramps with [list of symptoms]. I know this is not normal, but I cannot find a doctor who will take me seriously and work with me to get them treated."

You can even talk to the scheduling nurse when you call the practice initially and they will often be able to give you a read on whether the doctor is likely to work with you. ("Oh, honey, Dr. Goodstuff treats women like you all the time! It's so frustrating when nobody will listen!")

Repeat until you find a doctor who takes you seriously.

I had an ob/gyn issue I needed dealt with when I went ob/gyn hunting and very few in my area were willing to handle it appropriately, so I narrowed down my options by asking friends and acquaintances for recommendations and DISrecommendations, got an opinion from my GP, and then made calls. And I knew right away when I'd found the right practice because the scheduling nurse was all, "Oh, we have several women in the practice with the same problem who had to look through several practices to find the right fit." And when I had my first appointment with the doctor, she was not only willing to handle it appropriately, but extremely sympathetic about how frustrating it was to find a doctor who would.
posted by Eyebrows McGee at 12:50 PM on April 5, 2011


Nth persist in finding a good doctor who will take you seriously -- also Nth gender not an issue. Stress "time off work," "incapacitated," etc. "Tell me what you think you can do to let me live a normal life," and see if you get a there-there-dear look and an I-have-no-clue blither about OTC pills, or, well, taken seriously. There are good doctors out there (& Eyebrows' observations about their staff being a clue are spot on).

Have you experimented with different NSAIDs? Naproxen is a magical thing for me and I weep for not having known that years ago. I have some joint issues so I have quite the painkiller collection at the moment, and nothing, even some pretty hi-test narcotics, beats a good dose of naproxen. I am sure that's different for everybody, though, so -- don't despair when one flavour of painkiller doesn't quite cut it; I had to try a lot before -- yeah! Naproxen!
posted by kmennie at 12:54 PM on April 5, 2011


Are you aware of some of the more recent research on Depo and bone density? It seems to indicate that bone density loss is less severe than once thought, and more importantly, entirely recoverable in time after discontinuing Depo. I only bring this up because you said Depo works for you and unless you had a bone density test come back dangerously low already, you don't need to stop Depo just because that'd what everybody says you should do in theory. Get the bone density test if you did not already, see if you can keep on with the Depo if that works for you and you do not already have significant bone loss.
posted by slow graffiti at 2:03 PM on April 5, 2011


Modern Medicine has limited solutions to painful periods: hormones or to take pain meds. So if that is not what you want, try a different route: acupuncture or mayan abdominal massage. Both are known to improve periods and both are likely to make you even more fertile. And could be covered depending on your insurance with or without a doctor's prescription. And post-baby, some women do experience decrease in period problems. Good luck!
posted by mutt.cyberspace at 2:21 PM on April 5, 2011


Keep looking for docs until you find one that takes you seriously. My surgery for endometriosis was the best thing EVER but it took 4 OB/GYNs before I found a good surgeon who took me seriously. It was so bad in there that they had to bring in another surgeon to operate on my bowel...eek.

Good luck, don't give up hope.
posted by the young rope-rider at 2:44 PM on April 5, 2011


Tell them you want to get pregnant and want to be sure it is going to be safe for you. Personally, I'm a case where a fibroid caused dangerous complications for me. And yes, I had periods like yours, due to the fibroid. Hopefully this is not what is going on with you, though. But after what I went through, I got much better info on what constitutes normal bleeding (after being dismissed for years and years). Yours sounds like it might be abnormal. Emphasize how often you have to change your pad or tampon. You shouldn't soak more than one pad an hour, is the rule I was given.
posted by Knowyournuts at 2:55 PM on April 5, 2011


Mention that the pain is enough to wake you up at night. That, along with missing work, is one of the hallmarks of severe pain that doctors are trained to mention. Other things to emphasize is that your pain interferes with the daily activities of life -- you can't shower, brush your teeth, brush your hair, do your grocery shopping, &c. A good doctor should ask about things like this, but mention them specifically in case they don't.

Also yes, please, please see an OB/GYN as opposed to just a family practice doc who also does ob and gyn. If you need a referral, ask your PCP to refer you to a gynecologist for debilitating dysmenorrhea, and be sure to use those words.

I know you said hormonal birth control is off the table, but ask your gyn about a Mirena. They don't interfere with future fertility, but they are AMAZING for controlling bad periods and cramps in most women. The dose of progesterone is localized, so it is very very small, but incredibly effective. I love mine.
posted by KathrynT at 3:14 PM on April 5, 2011


First, go to a GYN and not a general practice doctor for this. If you need a referral, go to your primary care doctor first and ask for a referral to an OB/GYN for menstrual issues - they should be able to do that no problem.

Second, tell your doctor EXACTLY how bad this is. Mention the clots, the whole bit. Go into as much gory detail as possible - as much as you did here, and even more if you need to. Don't take "Oh, it's nothing" for an answer. Be sure that something gets done. Mention that you're concerned about what this means for any potential pregnancies. Stress that you're missing work because of this and insist on getting a note for your employer detailing your problem. (Not necessarily for the benefit of your employer, but just to have it on record and also to get your doctor to acknowledge the extent of the issue.)

And then, if they don't want to take you seriously, ask for a second opinion. And keep going until someone helps you.
posted by sonika at 3:59 PM on April 5, 2011


You don't have to bring one of the clots to your doctor's office. Clots are just what happens when you have blood sitting still for a while. If you want them to understand what your periods are like, you don't have to literally show them, you just have to use specific terminology to describe the bleeding.

Not as helpful:
"there was blood filling up the toilet" (blood in water always looks like a lot),
"I was changing my pad every hour" (what size pad? a pantiliner? a super ultra? how much did the pad need to be changed?),
"there were big clots in it" (too subjective).

More helpful:
"there was enough blood to fill up a Diva Cup after 2 hours",
"I was soaking through a regular maxi pad per hour",
"there was a clot the size of a quarter".
posted by treehorn+bunny at 7:12 PM on April 5, 2011


To add to treehorn+bunny's: yes, they do like their common-object clot descriptions in medicine. During a miscarriage I mentioned "like strawberries" and could not believe the extent to which my "strawberry" comment was repeated to each new person I dealt with in the hospital, written down on charts, etc.
posted by kmennie at 7:22 AM on April 6, 2011


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