First meeting with a doctor tomorrow,how to stick to alternative treatments? self-dx?

delfini · 06-11-2007, 08:13 PM

Hi!

My appointment with my college health center doctor is finally taking place tomorrow. I am preparing all the information that can be helpful right now. And I thought that I would throw out a question here.

I have been diagnosed by several gyneologists in Europe with polycystic ovaries. However, either they are not familiar with PCOS or something else, nobody told me that I had the syndrome. My LH and FSH ratio is also upset like in other PCOS cases. But what I remember is that each gyno put me on birth control pills in order to regulate my cycle and prepare me for a blood test to see hormones.

This time, actually first time, I am experiencing a very protracted menstruation period, today is the 50th day and I have gained 15 pounds and 5 inches around my waist in last three months--I just weighed myself yesterday and was shocked.

With all the research I have done, I do not want to take pills again, even if it is for blood tests. And===I do not want to take Metformin or any other kind of drug to treat PCOS===.

I have started a fitness and diet routine to balance out my symptoms and it is work in progress.

SO, the question is--when I go tomorrow to visit the gynecologist, what do I say and what do I ask for??????????????????????????????????????????????? ??

OK, I am going to tell that I have irregular (!!!) periods. I wonder, should I tell her about my suspicion of PCOS. I am not sure if this health center diagnoses such conditions. Since no one has diagnosed me with PCOS yet, I want this doctor to explore my health as if it was not just PCOS but try to look in general what is causing the irregular period, etc. What if it is not PCOS, but Cushing's syndrome, a thyroid problem and so on.

I hope someone has an experience or suggestions of how best to approach this new doctor, to tell that I suspect having PCOS or not right away, how to explain that I am not going to take any drugs.
Wheew, tough questions for me. I really need help with these. And I would greatly appreciate all that you can say or share!!!

askcassyfirst · 06-12-2007, 12:29 AM

Hi Defini:

I applaud you for taking personal responsibility for you health, and asking questions of your doctors, and looking for answers. Regardless of how you end up managing your condition (whatever it turns out to be), being in tune with what is going on day by day will help you tremendously. Many people turn a deaf ear to the 'voice inside' which is telling them 'something isn't right'.

That being said, I think most gals here on this board would agree, it is really important that you find a practitioner who will help you investigate the cause of your symptoms, especially considering that you've been bleeding for so long. You've mentioned that several gyneologists in Europe have diagnosed you as having polycystic ovaries yet in the same post you say you've yet to have a definitive diagnosis. True, definitive diagnosis is 'rare' but do you have any way to contact those previous physicians and get your records? Seeing as you have had a pretty severe ramp up in your symptoms, calling them and mentioning that might help them say, "sure, let me send your records to your current practitioner." At the very least they may have records of your previous exams.

Keep in mind, medical testing by traditional western practitioners doesn't mean you have to follow thier treatment options. Getting an accurate understanding of your symptomology, however, is something that a good doctor MD can help you with. IF you then choose alternative treatment, you can have your records sent to your new practitioner. My TCM doctor, for example, often works with gyneologists through referrals, and you'll likely find that a good MD, Nurse Practitioner, Endocrinologist, etc will provide your test results to whichever type of licenced practitioner you choose. This is called Integrative Medicine, and I'm a huge fan of this!

To answer your question: when I go tomorrow to visit the gynecologist, what do I say and what do I ask for? What is your goal in seeing the doctor? To get help in determining what is going on, correct? To assure yourself that it is PCOS, and rule out other conditions? That is something you can be upfront about. And you SHOULD be upfront about your desire for natural treatment, if that is your goal. No one is going to tie you down and force you to do anything (hopefully

) so just be honest. If you doctor won't listen, or won't help you, then ask for a referral to someone who will. This is your body, and you are paying them.

I think it is a great idea that you are finally getting in for the appointment, however. It will give you peace of mind to know what's 'really' going on.

Cassy

delfini · 06-12-2007, 01:16 AM

Wow, Cassy! Thanks so much for such a detailed and empathic response! It is tremendously helpful, especially because I am alone and talking to myself (hence voices inside

), not having a close person to discuss this with.

Hmmm, in the last several hours I dug up hormonal test results from my European gyn examinations (I keep everything, my zodiac sing is cancer and I am a history student). And their diagnoses. One of them, from late 2004 actually says that I had PCOS. I think I did not pay close attention to this, at the time I just did not know anything about this. So, Voila! I am now suddenly officially diagnosed. The second gynecologist, however, did not arrive at the same diagnosis in 2006, she just noted oligomenorhea (probably because I did not mention PCOS, so unfamiliar to me at the time).

BUT, I will go ahead and make new tests and hear updated information.

The idea behind not telling the doctor about PCOS was to force them to put me to new tests and not just rely on the old diagnosis. This is just extra carefulness I guess. And now that I have an opinion of another doctor, this new one might just think "ok, then this is the problem" without finding it out himself. I guess I am just paranoid about doctors...

Cassy, reading your post helped me realize that I could probably just say that I have a history of PCOS and am worried about this latest complication and would like to run tests with endocrinologist or get treated by a TCS specialist to help aleviate symptoms.

Quote:

Originally Posted by askcassyfirst

My TCM doctor, for example, often works with gyneologists through referrals, and you'll likely find that a good MD, Nurse Practitioner, Endocrinologist, etc will provide your test results to whichever type of licenced practitioner you choose. This is called Integrative Medicine, and I'm a huge fan of this!

To answer your question: when I go tomorrow to visit the gynecologist, what do I say and what do I ask for? What is your goal in seeing the doctor? To get help in determining what is going on, correct? To assure yourself that it is PCOS, and rule out other conditions? That is something you can be upfront about. And you SHOULD be upfront about your desire for natural treatment, if that is your goal. No one is going to tie you down and force you to do anything (hopefully ) so just be honest. If you doctor won't listen, or won't help you, then ask for a referral to someone who will. This is your body, and you are paying them.

Cassy

However, I would like to rule out other possible dysfunctions.... Somehow I do not trust the diagnosis of my former gynecologist. It was a long time ago and I do not remember being tested for various symptoms and asked vigorously about my problems, it was such a quick and unnoticeable diagnosis that I even did not remember it. So, this will be one of my priorities during the appointment--insist on alternative treatments (I hope they will not tie me down and stuff me with pills

and on having new tests done, looking into possibility of other causes.

Last, but not least, can somebody help me interpret these results:

November 2004
LH 2,517
FSH 2,85
Estradiol 0,103
Prolactin 237,9
Testosteron 0,34

February 2006
LH 20,36
FSH 4,68
Estradiol 216,4
Prolactin 227, 5

What on earth has happened to my LH there?

I hope my doctor tomorrow will be super nice

askcassyfirst · 06-12-2007, 01:26 AM

Oh! I'm glad you got this before you went to bed. I was hoping you would. I wish you luck!

You are smart to be clear about your wants, and your opinions. Testing IS key to figuring out what is going on, and indeed, EVERYTHING can change even in a short period of time. Yes, it sounds like you have gotten a plan in mind! We'll be waiting to hear how it turns out.

Cassy

PS. one think you'll want to keep in mind when interpreting your hormones is what time in your cycle you were when the test was ran. Generally speaking, you'll want to get a baseline, and then rerun tests at the same point in your cycle to see if what you are doing it working. I'm sure you'll get some other opinions. Meanwhile, I must be off to bed.

Rhiannong · 06-12-2007, 01:28 AM

I suggest telling them all the symptoms: weight gain, period...everything. See what they say and then suggest PCOS or Thyroid if you don't like what they say. Good luck.

delfini · 06-12-2007, 01:37 AM

Thank you Cassy and Rhiannong!

I might even bring Dr. Vliet's book with me. After I share my symptoms and ask for doctor's opinion, I might simply point at pages and explain where I am getting my information from.
In Chapter 8 she talks about the need to perform a comprehensive hormone testing, which I have never done.

delfini · 06-12-2007, 05:25 PM

She was very nice and eager to listen and understand. So I immediately felt at ease as if I was in good hands.

I prepared a calendar of my periods as a visual aid and it was the basis of our conversation for most of the time.

She asked about family history of various conditions and diseases (of which I know very little, honestly), about past treatments and tests, especially pap smear and ultrasound, and I told her that cysts were found twice in my ovaries.

However, after all this, she asked me whether I or someone in my family had a history of thyroid problems. In all truth, I liked the approach, because the doctor came up with her conclusions and was ready to explore them, she offered several tests and even encouraged me to do an overall physical exam (I myself suggested the latter).

Only in the last part of our meeting I suggested the possibility of PCOS, based on what I read, and, in fact, based on the diagnosis of one of the doctors (which I forgot and ignored until yesterday). But I told her that the very last gynecologist did not find PCOS despite the necklace rim of cysts in my ovaries.

The doctor was very open to the idea and confirmed that many PCOS sufferers would have my types of complaints and said that we will test for that and for thyroid.

I showed her my past hormone test results and she reacted by saying that this is the old way to diagnose PCOS (test LH, FSH, Estradiol, etc.). She used to order those tests in the past but now she does something new. It was pleasant to know that their practice in this area is up to date, although I am not sure if they test completely different hormones, or another combination of them.

So my goal of exploring various possibilities as to causes of my irregular periods, skin and hair problems, etc. seems realizable.

As to the second goal of finding alternative treatment, I am still not sure what is going to happen. I told about my opposition to pills and medications immediately to the nurse who checked me in before the doctor saw me. So several times during the conversation the doctor tried to explain that oftentimes a pill can be the most effective solution, especially in my case--prolonged bleeding. She asked why I did not want a pill or any other medications. I said that I want a lifetime solution and do not see myself taking meds on a regular basis. Besides, I had a bad experience with those pills that I took to stop bleeding in the past (when my gynecologist wanted to do hormone tests)--a horrible headache that no one could explain, I felt so stupid--it was so sharp and penetrating, literally when I walked it increased the pain so much. That is when I researched a little bit and found out about clots. I was pissed at my gynecologist for not even warning me about such a fallout. So I mentioned briefly my headache experience to this doctor as well and she noted that some women indeed cannot take pills because they are susceptible to forming blood clots, although the number of such women is very small. I also told her that I have gotten serious about diet and exercise as I know that they are very effective for PCOS. She agreed that this was a huge part of the solution.

SO, it came down to her warning me that a pill would be the most effective solution to protracted bleeding but I have an option of just waiting when it stops without forcing it. Thus, she is willing to accept my preferences and work within their parametes. She did not mention TCM or anything else that could help, I am going to ask about it next time (I asked the nurse about integrative medicine and she said, that although this doctor does not practice it, she might just give me a referral to another specialist, which is good). At the moment, she took blood samples (for chemical analysis, seeing if I am anemic, and somer hormones I believe) and referred me for a pelvic ultrasound (to check that I have cysts and not fibroids) so next Monday when we meet she at least wants to be able to rule out serious complications and get more concrete about causes.

skillet04 · 06-12-2007, 10:11 PM

can you share with us this doc's "new" way of determining pcos?

thanks

askcassyfirst · 06-12-2007, 10:51 PM

Delfini:
That's awesome. I'm so glad that your new doctor was willing to listen, and that they impressed you with not only their incite, but also their genuine interest in your experience.

Keep us in the loop as to what happens.

Best,
Cassy

delfini · 06-13-2007, 02:31 AM

Thanks! I am going to keep you informed about what happens next, the new diagnosis method, and my impressions and progress. All the best to you all!

kissthesky · 06-13-2007, 08:57 AM

Delfini: I have been following your doc visit. You are a smart and brave woman to face this the way that you have. I believe that you can and *will* come out on the other side of this as a victor.

My suggestion: (if I may) Begin today as if you know you have PCOS. Change the diet, lifestlye, etc. You may never "know" for sure. None of us may. PCOS is a difficult one to pin: docs dont always know whats happening either.

Actupuncture works well for me. As does all natural therapy. I begin a 3 week juice fast tomorrow. I say: try things, if they work, great. If they dont work, try something else.

We are here for you.
-K

delfini · 06-13-2007, 09:45 PM

Wow, thank you Kissthesky, wonderful nick by the way.
Yes, I have started seriously on a diet and exercise regime (including walking, strength training, and yoga), in just several days of such a positive lifestyle my period became heavier. I am not sure if this is a good or a bad thing but something tells me that this is good because for the past 50 days I had just brownish spotting, and now that the cycle "actually started" (weird, I know), I also expect it to finish.

Thanks for support, and I am wishing you best with the juice fast, I am doing a variety of a raw diet, can be tough battling cravings but for the past week I did it 100% and can definitely feel the difference in my physical and emotional condition.

My hope is that by the follow-up appt on Monday, my period will stop and I will evade the pill. Please, be it so.... But every day of the diet I am also constantly accustoming myself to the idea that this will be my lifetime eating style. Your advice is well taken, kissthesky.

delfini · 06-15-2007, 12:02 AM

So I went for an ultrasound today and the radiologist ruled out fibroids but found my ovaries to be enlarged with very big cysts. I remember last year I saw a US of my ovaries and the cysts formed just a thin necklace around the inner rim of each ovary, but today they were so huge, almost taking up all the space in the ovaries. The radiologist asked me if I heard about PCOS because she thought the picture was classic PCOS.
Will see what my doctor thinks about the results on Monday.

delfini · 06-18-2007, 01:23 PM

Ok, so the appointment went very well today, the doctor told me about test results for thyroid function (normal), anemia (negative), chemical analysis (a little elevated liver indicators and cholesterol), and hormones. From hormones she looked at prolactin (normal), testosterone (higher than normal), and DHEA (normal). For some reason she has not received the ultrasound results yet, but even without them she said that looking at the pattern of my cycles and these test results it seems that PCOS is very likely.

She again stressed the benefits of a birth control pill and I listened with patience. But ultimately we were on one page about the need and undeniable benefits of healthy diet and regular exercise. She said that this approach is very smart and worthwhile, especially because PCOS puts one at risk for further complications like diabetes, heart disease, etc.--so sound eating and fitness habits are a lifelong solution. And she admitted that patients with PCOS often have trouble choosing diet and exercise as a focal part of their treatment. She made come dietary recommendations, asked what kinds of physical acitivity I like and suggested that I continue with walking, strength training, and yoga.

At this point, I know that my insurance does not cover alternative treatments such as acupuncture, but I can consult with a dietitian on campus about my diet and exercise, this is my next step.

The bleeding looks like it is going to finish in 2-3 days. So I am optimistic at this point. I wish a comprehensive hormonal testing was done but I decided to trust the physician's instinct and judgement as this time. She was helpful and supportive in other ways and she understood my opposition to pills when I said that I know I need to do more than pills to aleviate PCOS.

I will focus on balanced, low-GI diet and exercise and make them part of my everyday life for now. Once I lose some fat, I will assess my condition anew and see a doctor if necessary. I am now 160 lbs with height of 5'7'', (and only three months ago I weighed 145 lbs) so for the next month I hope to shed about 15 lbs, but most importantly my waist has to go from 33 inches back to my normal size--at least 29 inches. Good thing it is summertime and no classes. Wish me good luck!

askcassyfirst · 06-18-2007, 10:30 PM

Wishing you all the luck in the world! You can conquer this step.

I'm glad you feel confident in the doctor's assessment, and that you are dedicated to your self and your mastery of what's needed to help balance your system.

Continue to follow your instinct. I've found personally that diet and exercise is really all I need to keep my weight down. The hormone balancing, however, requires the herbs and progesterone that I get from my TCM. Her acupuncture helps balance my emotions too, so I don't discount that either. But the diet is a HUGE part of it. I know this because if I cheat on the diet, I see the damage LONG before I do if I fail to keep an acupuncture appointment.

Keep us in the loop as you continue the journey.

Cassy