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~Seek first to understand, then be understood~
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I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace

Wednesday, September 15, 2010

Finding a Doctor to Help You With Your PMDD

Update:  March 2018...I have been getting a lot of requests for names of naturopathic doctors lately...I refer everyone to the American Association of Naturopathic Physicians.  A good nurse practitioner in your area can also be of great help.  I realize these links are for Americans, but perhaps you can find a similar organization in your country.  I wish you all the best and let me know how you make out!  In the meantime, here is my original post, written just over two years ago:

Someone had asked if I’d ever looked into saliva hormone testing, and the answer is yes. Once, last summer and fall. This post will be long, but I hope it will be of some help and consolation to those who are meeting dead end after dead end in your own search for relief from your PMDD.

Imagine my joy last summer when I opened my local paper to find a special supplement for women, and discovered, after all my years of searching, that my town had a genuine hormone specialist.

Or at least that’s what the ad said. My experience, unfortunately, didn’t bear that claim out.

My first visit to this woman was a resounding disappointment. I’d waited until I was in the throes of an episode to call for an appointment, so that she could see for herself what I was dealing with, but was told I’d have to wait several weeks for an appointment.

Once I finally got there, symptom-free, the upshot was she wasn’t at all familiar with PMDD, had no idea what I was talking about, and when I tried to describe it to her, how I am perfectly fine and happy most days of the month, but then there is that one week that everything goes awry emotionally, in conjunction with my menstrual cycles, she just looked at me and asked, “Have you talked with a psychiatrist about this?”

Yes, I said, I have, but it’s not a psychological problem, it’s a hormonal imbalance in the brain (ergo why I am here) due to a dip in serotonin (aka a mood-elevating hormone) on those days, that causes the D part of PMDD, or depression.

“Depression!” she says, her eyes practically lighting up. “Then what you need are anti-depressants.” No, I repeat, because it doesn’t happen but a few days a month. The rest of the month I am fine. Healthy, happy, whole, and sane.

I explain the situation to her again. She decides I must be in denial, puts Depression down as my diagnosis (which I discover after I go online to find out what the diagnostic codes she has written on my receipt and lab test requests mean) and hands me a home saliva hormone testing kit.

Send this in and call me to schedule an appointment to discuss the results, she says, practically shoving me out the door. Oh, and that will be $100. Next!

The thing is, I have to wait until I have another episode of PMDD to take the test, because I want to do the test while the PMDD is happening, and an episode has just passed, so it takes another month for me to even do the test.

In the interim, since it is clear that the true focus of this woman's practice is elsewhere, as in botox injections and chemical peels (both of which are truly hazardous to your hormones), and the hormone testing is apparently just some sort of sideline, I call all around town to find someone else to help me sort out my unruly hormones.

No deal. Only she and one other doctor in town are doing this kind of hormonal testing and the other one was a man and couldn't see me for at least three months.

So I do the test. I knew it was a mistake the minute I dropped the samples off at the UPS shipping post. The instructions had been so specific about keeping the saliva samples in the freezer and mailing them off THE NEXT MORNING. You could go with UPS or the postal service, but I knew the US mail didn’t go out before three around here anyway, so I opted for UPS.

I walk in with my little test kit, and the woman says, “Fine, just leave it on the counter.”

“When do they pick up?” I ask. “Oh, sometime this afternoon.”

In the meanwhile, my little kit sits out in the open on the counter of a store that has its front doors wide open to the fall sunshine. How could the samples not be corrupted?

I ask this of the doctor when I see her three weeks later, and she looks at me like I’ve grown two heads. “I don’t know,” she says. “It’s not a problem.”

Well, I see it as a problem, because my test results turned out to be totally unexpected and off the charts in some areas, and she can’t explain why. She just kept looking at the results, and circling them, and saying nothing more than, “Well, that’s what it is. As you can see, its…high.”
She drew in some upward arrows for effect.

It turns out, that according to the test results, instead of a deficiency in my hormones, I have an excess in some areas. This causes a problem for the doctor, because apparently the standard procedure is, she tells me I am low in this, this, and that, and then tells me I am in luck, as she has just the supplements I need on hand.

Be very wary of any kind of testing that comes complete with (their own) name brand products as the solution to your problems.

Fortunately, however, she was out of the one thing I was deficient in, Vitamin D. I told her that was okay, I’d manage to get some on my own (from a company I know and trust).

In the meantime, I ask the doctor, “How do you get rid of excess hormones?” She looks at me. “I don’t know.”

Well, I know the answer exists, because I read it somewhere, but I don’t remember where, because it was just something I'd read and had no idea I’d be needing.

“I’ll call the lab and see what’s going on with these results,” she says. “Why don’t you make an appointment for next week to come back and find out what they said?”

This time I looked at her. “Why don’t you just call me and tell me what they said?”

She agrees to do so. So I ask her what could possibly cause my hormone levels to be so high. I know the answer. I want to see if she does. After all, I’m the one paying her to tell me what the problem is. She fumbles badly until I give her a clue, then she takes off with it, all the while, asking, “You know what I mean?”

Yes, Doctor. I know what you mean. I also know that you’re winging it here and it shows.

In the end, she decides I need more testing, and bounds out of the room to figure out what test I need.

"Why do I need to take a different test?" I ask. "Because this one is better than the other one," she says, which leads me to wonder why she didn't give me the better test $500 ago.

No matter. No way am I doing this saliva test thing again, which several doctors in my research books have found to be unreliable. They recommend blood serum tests instead.

I ask her if there aren’t any blood serum tests I can take to get a better picture of what’s going on. “Why?” she asks. “It won’t do any good.”

This is the exact quote I have read over and over again in my books about women seeking help for hormonal issues, being shut down by their doctors who either have been trained to say or truly believe blood hormone tests aren’t reliable.

But how can the home-collected saliva tests be? It’s impossible. At least when you have samples taken at a lab, be they blood, urine, or saliva, they keep them refrigerated, and transport them in refrigerated containers. God only knows where my samples sat during the five days it took to get to the lab. I sent my samples off the morning of the 25th. They weren’t tested until the 29th.

To find out more about the subject, I went to what was billed as a seminar on saliva hormone testing, sponsored by a local pharmacy. A compounding pharmacy, one that can create individual prescriptions for women with hormonal imbalances, once the testing kits show where they are deficient. The room was filled with about forty women, all middle-aged.

The presentation was completely on target and informative. The information was correct. But it was a marketing presentation all the same. Go to your doctor, ask for these kits, get your hormones tested, then come back to us for a consult and we will mix up the perfect prescription for you.

Sounds like a dream come true to women who can’t sleep, can’t lose weight, are either bitchy or want to cry all the time or both at the same time, have hot flashes, headaches, backaches, swelling, cramping, bloating, joint pain and are either losing their hair or growing a moustache, just to name a few symptoms. And don’t forget, we’re all exhausted, and not interested in sex.

But they warn you the testing is imperfect, and it may take a few tests to get your prescription right, and you will need to be tested every three months thereafter to make sure the hormones they are giving you are the right ones for you.

They do not mention the cost, nor that it is not covered by insurance, nor that there are only two doctors in town who subscribe to this method of testing, and one of them is a woman who apparently doesn’t know the first thing about interpreting the results. All she knows is how to hand you a kit and say, “Call me for an appointment to get the results.”

This is the same woman who after speaking with me for 15 minutes, strongly suggested I go on anti-depressants as the solution to my hormonal problems, which I refused, because 1) I'm not depressed, and 2) countless case studies show that taking anti-depressants only makes your PMDD symptoms worse.

Hormonal imbalances are so individual, because each woman’s physical make up and life stressors are so different, that prescribing one pill to take care of them is like asking every woman to wear a one-size-fits-all-tent dress.

This time, after seeing the supposedly high levels of my hormones, in particular my serotonin level, which is what the SSRI anti-depressant would supposedly boost, the doctor did a complete 180 degree turn-around. As I was leaving, I asked her, just to make sure, “Now, you don’t recommend the anti-depressants any more, correct?” And she looked at me. “Well, you’re the one who said you wanted to go natural, right? You can’t do that if you’re on anti-depressants.”

A few weeks later I got a call from her office, informing me that the supplements for my depression that my test results indicated I needed were in and I could come in and pick them up.

I said, "I'm sorry, but I'm not depressed, and at this point I have lost all confidence in your office's ability to help me with my hormonal problem, so I won't be picking up any supplements."

I received a call from the doctor the next day, placing the blame on the receptionist, who obviously had "misunderstood my situation."

Professionalism at its finest. Blame someone else. The receptionist hadn't misunderstood anything. Not when I knew the doctor herself had diagnosed me with depression.

I then asked the doctor if she had called the testing company (as she had said she would when I was in her office) to find out why my results were so abnormally off the charts, and she said that no, she hadn't, because, well, "The results are the results."

And besides, she said, "I didn't give you all the results anyway."

"You didn't?" I asked, stunned.

"Well, no," she said impatiently, "because you wouldn't be able to handle all the information at once." These things take time, she insisted. It takes more than a couple of visits to sort everything out.

Needless to say, I never returned.

April 2012 Update:  I recognized the "hormone specialist" I wrote about above in the check out line at our local whole foods co-op.  The clerk was chatting about a television show she had watched the night before and the doctor asked, "Does it have to do with money?  Because I only know about things that make money."

Everybody laughed.

But I knew she was telling the truth.

After my useless encounter with her, I went to an endocrinologist, for whom I had to wait several more months to see. She was a lovely woman, well-informed, empathetic and understanding, since she herself happened to be going through menopause.

However, she was not a fan of bio-identical hormones. We talked a while, and then, comfortably leaning back in her chair she said, "As a medically-trained doctor, I can only give you advice based on the information that has been clinically proven. Your choices are anti-depressants, birth control pills, or hormone replacement therapy."

(The HRT she was talking about, however, was the conjugated estrogen therapy proven to cause several potentially fatal side effects by the Women's Health Initiative Study. (More on this in another post, since this one is already so long).)

"But as a woman," she added, then leaned forward and looked me in the eye, "When you find the answer, call me." She held up her hand to her ear to mimic using the phone.

This are only two examples of how frustrating it can be to find answers for your PMDD. Some doctors claim to have the answers but don't, some can only speak to what they have been taught, others are willing to help, but don't know what to do.

Meanwhile, month after month rolls around, and we suffer.

I managed to talk her into doing some blood tests for my estrogen and progesterone levels. "I'll order the tests," she said, "but what are you going to do with the results?"

"I don't know yet," I said, "but I'll figure something out."

In the end it turned out the tests she ordered for me weren't quite what I needed, but I didn't know it at the time. I've since learned more on the subject, and after more than a year's worth of PMDD episodes later, I managed to get my primary physician to request the serum blood tests that I needed, per the instructions on page 385 in Dr. Elizabeth Vliet's book, It's My Ovaries, Stupid!  We then started a bioidentical hormone regimen that finally saved my sanity. 

Yes, in the end I was able to work with my primary care practitioner, who, per the instructions in Dr. Vliet's book, prescribed bioidentical hormones for me in the form of an estradiol patch (the right dosage for me was .075mg/day, but you can start at .0375 mg and go up to 2.0 mg), and 200 mg of prometrium (progesterone capsules), which I still take daily.  For seven years, this bioidentical combination was a huge help with both my symptoms of perimenopause, and my PMDD. (March 2018: I have now reached menopause and reluctantly no longer use the patch.) 

Other effective things I found to help ease my PMDD were all lifestyle changes - diet, exercise, self-awareness, self-care when an episode descended, and vitamin supplementation.  For a list of what I took then and/or now take daily, please email me at info(at)livingwithpmdd(dot)com. I do not provide it here, because I am constantly fine-tuning my efforts to be well.

And that is all I want for you.  To be well.


  1. I love the "upward arrows". Truly, you have to laugh or you WOULD cry! Thank you, Liana. We are not alone. :)

  2. WOW can I relate to this. But HOW do we find a doctor locally?

  3. Liana, you are great. I am so not alone anymore.

  4. I guess I need to buy the book to order my hormonal blood test?

  5. Or you can get it from your local library. Get it on inter-library loan if you have to. Where there's a will, there's a way. But honestly, it's the best $20 you'll spend to understand all sorts of hormonal information. And if you're serious about getting to the bottom of your PMDD, this book will be the least of your expenses. Good luck!

  6. After much research, it looks like there is nothing wrong with our hormone levels. Women with PMDD have the same levels as women without. There has been some research suggesting a genetic link that involves estrogen receptors and frontal cortex dopamine receptors.. it's complicated. Essentially, we're super sensitive to the steroid hormones that the ovaries produce. It's in our brains. That's why antidepressants work for some. For me they don't. The Pill has been the only thing to give me relief somewhat. I believe the only thing that will eradicate the problem is an oopherectomy (ovary removal) -- but that comes with some major side effects. But -- I'm willing to investigate.

  7. You're absolutely right about there's nothing wrong with our hormone levels...it's how our brain processes them that's the problem. Will be doing a blog post on this in the near future. SSRIs work at most in only 60 percent of women who take them. I have the reason for this in my files, too, and will be doing another blog post on anti-depressants and PMDD. I know nothing about ovary removal, but there are other sites that do tackle this topic. Try the link on the sidebar, Survivor's Guide to Surgical Menopause. Good luck to you in your search for a solution you can live with :)

  8. See I really thought that during that time in our cycles it was the build up of hormones that last week before you bleed...that's why when you bleed its a release of those hormones and that is why the symptoms go away...some peoples bodies over produce causing the over active pmdd symptoms?

    1. Hi, amyt,

      Close, but not quite! It would take a whole blog post to explain this correctly, so I will put that on my list of questions to answer. Starting in September I will be posting regularly again. Thanks so much for your question!

  9. Does anyone crave tomatoes?

  10. Nope - Reese's!

    Thanks so much for your blot post! I also have PMDD. My gyno prescribed Beyaz and magnesium (500-1000? Mg), calcium (1000-1500? Mg) and vitamin B12 (500? Mg). Unfortunately, I can't remember if those dosages are correct; maybe someone else can help. I was also taking other supplements regularly (GNC's Active Vita-Pak).

    I found much relief, especially with the Beyaz. I'm 26, so no menopause yet :) I have an unspecified mood disorder and I suffered PPD after my son was born. This combination was really effective for me.

    Happy Holidays!

  11. Very well written. You are entertaining as well as thorough. Thank you for outlining the failures of the medical community in such amusing (if not frustratingly disappointing) prose. I have gone to 3 psychologists, 2 psychiatrists, 2 MFTs, countless ministers and doctors and have never heard of PMDD until now. I have tried different birth controls, exercise, vitamin B-12, Sam-E, 5-HTP and prozac. Nothing helped except the prozac, which made me numb to life. My husband is avoiding me, my teeth are ground down, I'm constantly living under self-condemnation and hatred (to the point of wishing to die) and I fear for my 1 year old's future. I want more than this pathetic excuse for an existence. I want to ENJOY my life and not have to apologize to every person I come into contact with at the end of the month. It's like I'm a werewolf needing to be restrained or the incredible hulk who needs to be locked away. I am thoroughly disgusted with myself. I want to be sweet, gentle and self-controlled, not this MONSTER, this CRAZY BITCH. I am out of excuses for my behavior. I'll do anything to stop this endless cycle of helplessness and hopelessness.

    1. Honey, you are NOT alone. Please stay strong! I completely understand. I wish there was an answer. The only thing I've found helpful at all is regular exercise and getting sugar out of my diet. I don't even know if the same things work for every person. I have tried the psychiatrists and medications to the point of such despair that a suicide attempt was made (regretably). I was trying to talk my OBGYN into a full hysterectomy. I also tried to talk a psychiatrist into ECT. It is really disappointing that there is so little help out there for us. The worst is that I have gotten pretty good at hiding it from people when really I want to yell and scream and beg for help. But, most people don't understand so there's no point. Your reply made me realize there are others who understand.

  12. Wow, I am very happy to read this article. I've been dealing with the same exact thing for the past 5 years. I've had hormone testing, thyroid testing and have been told I'm bipolar, agoraphobia with panic disorder, etc, etc. Now, I am still unable to work because of this. It has effected my whole being. I am unable to afford any type of treatments or specialists because I have no income. So what does someone like me in this position do? Just deal with it each month?

    1. The only thing you can do that does not involve spending money is practice awareness (mentally, emotionally, and physically), find ways to calm yourself (such as listening to music, reading, or walking), pray, meditate, maybe practice yoga with a DVD, watch your nutrition and stick to eating whole foods as best as you can, drink plenty of water, and make sure you get enough SLEEP. Taking walks and getting enough sleep are two of the absolute best things you can do for yourself, and both are free. Unfortunately, micro-managing your symptoms like I do costs a considerable amount of money. It would be MUCH cheaper for me to get a prescription for anti-depressants, like ten time cheaper. But then I wouldn't have the awareness I now have of what goes on in my body nor would I be able to manage my symptoms, because, at best, they would only be masked. My best advice when you have no resources is to go within and find your strength there. It doesn't sound very helpful, but it can be, if you are determined to make a difference in your PMDD. Spending whatever money you have available on cheap off-the-shelf products that claim to bring you health and wellness only leaves you doubly depleted. Spending time on and with yourself, focusing on your health and wellness, is never a waste of anything.

  13. I sit reading this post and these comments in tears. What a relief to know that I'm not alone. I've just started my journey to track down answers, and I pray that relief comes before this is too much to bear. Thanks for posting.

  14. I'm desperate I have been to many obgyns , naturopaths , psichiatrist . I dont Know where else to go . Do you know anyone in NYC who can help ?

    1. Unfortunately, I do not. Have you tried finding a naturopathic doctor or nurse practitioner at either one of these sites?
      American Association of Naturopathic Physicians
      American Holistic Nurses Association
      You type in your zip code and they tell you if there are any practitioners in your area.

  15. Thank you so much for this website blog postings whatever his is I came across! I'm in tears! Just knowing I'm not alone in this is awesome! When I was 14 I was diagnosed with bipolar disorder because I tried to kill myself the week before my period. There on out every week before my period I tried to hurt myself, would get very depressed and would also be irritable and super angry at the world. I struggled for... Well.. Now I'm 35.. I have 3 children.. And I was on and off every medication possible . I have seen over... Meh maybe 30 different psychiatrists and psychologists and therapists and who knows how many drs. All diagnosing me with everything under the sun ! Till one day.. My mother said to me, ya know the only times you've been sane where when u were pregnant and breastfeeding.... At age 28... It hit me! My period was the culprit to my life of hell!!! With that knowledge I tried to talk to my drs and shrinks about my findings but having already been labeled as depressed or personality disorder or bipolar or a sex addict?! Lmfao .... It's hard to get a dr to take u serious! I have been off medications for many years now and have found for myself the only thing that helped was one dr I got to give me Valium for 7 days a month haha I would take it on the days I felt my "crazy" coming on.. And let me tell u it worked so well it was amazing! Until the dr wouldn't refill it anymore because I was out of it one month and overdosed on everything in the house.... So... With that I became self aware. I started taking meditation classes and mindfulness classes. I also got this period tracker on my phone so I am veryyyy aware of the dates I'm going to go crazy. I prepare my family members and children with how crazy I'm going to get and they all are aware and careful with me during that time. I have figured out my own coping skills... I paint! It's my medication.. When I'm depressed or angry I just pull out my paints! Oddly being mindful and being aware of the dates I have been controlling my chaos of those 7-9 days pretty darn well... So anyway my long rant... Maybe will help someone else... But also.. Thank u for starting this site! It's beautiful and amazing!

  16. I totally agree with the previous reply. After seeing many, many Doctors the answer has been Alprazolam 0.25mg 3 or 4 times a day for the late luteal phase.The study was done in 1994. The link is www.ncbi.nim.nih.gov/pubmed/8058235/