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Very Painful periods possible PCOS doctor saids No.
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dasher672 posted:
Hello everyone I hope you all can help me.

I'm 34 years, 5'3" overweight and not sexually active..never have been.

I found a link on a website and clicked on it and it talked about PCOS. I read the symptoms and thought wow that describes me:

**Painful periods as a teenager--went to the doctor several times for that. Still have painful periods especially the first 2 days of my period. Aleve starts wearing off before it should.
**Facial hair on cheeks and chin--I use a battery operated woman's shaver every 2 days. I tried the electro hair removal on the chin but it didn't work.
**Overweight--can't seem to lose it. I had lost quite a bit..at heaviest I was 275 lost down to 197..couldn't loose anymore and now back up to 240
**Blood pressure was 133/88; taking 12.5 mg of HCTZ for fluid not blood pressure issues.

***Small amounts of hair on toes, and some hair on breast..just a few really.

***Acne--still have breakouts sometimes.
***Periods are fairly regular though.
I went to the doctor for a spider bite on my ear and had him test me for PCOS. He thought I had it based on the above information I told him. Took blood and would call me in about an hour. I came home and he called about an hour ago and said that I didn't have it.

Testotroine level was right in the middle at .2; my insliun level was like 1 or 2 points high 23 I believe. He doesn't believe its the problem.

Called the doctor back yesterday and spoke with a nurse. Doctor refused to change or add any meds; he said there was no reason too. Now I have 2 choices...1. get a copy of the my blood work and go see a gyneologist or 2. do nothing at all. Apparently there's nothing wrong with having painful periods.So it must be all in my head. I feel like just stopping my other medication; singular, hctc and clartian and just say screw it. And I get in these little moods several times a year. Sigh I don't know what to do.

Thanks for any help or suggestions.
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Jane Harrison Hohner, RN, RNP responded:
Dear dasher: The definition of PCOS is a moving target.
The definition of what constitutes PCOS has changed over the past two decades. In 1990 the National Institutes of Health defined PCOS as:
1. Irregular or absent periods
2. Increased male hormone levels (i.e., acne, facial hair)
3. No other health condition which could be causing the symptoms

In 2003, specialists in PCOS from the Eastern Society for Human Reproduction and Embryology and the American Society for Reproductive Medicine met together. Their consensus statement, issued from Rotterdam, put forward a different definition for PCOS:
A woman could be considered to have PCOS is she had any two of these characteristics:
1. Irregular, or absent periods
2. Increased male hormone levels
3. Multiple small ovarian cysts ("string of pearls") visualized on pelvic ultrasound (It doesn't sound like you have had a pelvic ultrasound)

Using this second definition, a recent study of 728 Australian women by March and colleagues (2010) found an incidence of PCOS of about 18%! If the earlier NIH criteria were applied to these same women, the incidence of PCOS was about 9%. This group of women aged 27-34 were selected from birth records of a single maternity hospital. Of these community based women identified as having PCOS, some 70% did not have a prior diagnosis of PCOS.

While there are some methodology problems with this study (e.g., not every subject consented to having the ultrasound exam of their ovaries) I really like this study for two reasons. First, it really highlights the differences in incidence depending upon which definition of PCOS is used. Second, it suggests that the incidence of undiagnosed women may be much higher than we had imagined.

Given your history (marked facial hair, overweight, elevated blood pressure, and some acne), it is possible that your "regular periods" are actually non-ovulatory bleeds. I would suggest that you get your labs and have a consult visit with a GYN, or even a reproductive endocrinologist (they have the most expertise is PCOS diagnosis and treatment).

In terms of your painful periods, that is particularly linked to PCOS, but it can indicate endometriosis. A GYN would be best suited to evaluate the menstrual pain and consider other treatment options.

And please don't stop your Singulair, HCTZ, or Claritin. I can understand your frustration, but severe asthma is a concerning issue. Plus, the diuretic may be helping keep your blood pressure from going any higher.

Lastly, since you are a great online researcher, here is a link to information about the metabolic syndrome. It is the overarching condition, of which PCOS is the GYN component:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004546/

Don't give up, you are asking all the right questions!

In Support,
Jane
 
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mel_MIMI responded:
I have PCOS for years. A lot of doctors know about it , but cannot identify the problem. The only real way is go to a professional your gynecologist. They will do an vaginal ultrasound and see if you have cysts on your ovaries. PCOS is several cysts all over ovaries. Therefore, this is the way to tell. Being overweight can make levels off as well and is recommended that you lose in order to make levels of hormones stabilize. Sometimes they give Metformin.

Just go to your gyno and get the real truth.
 
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An_229857 responded:
Don't stop with your doc telling you you dont have PCOS!!!

I actually went to the doctor because I use to have extremely thick hair and all of the sudden I was loosing it like crazy. I had never even heard of PCOS before and they sent me to see an Endocronologist who helped diagnose it. It has literitally changed my life knowing what is going on and how to correct it. For me the easiest change was to start taking birth control regularly. It really helps calm down almost every single symptom of PCOS. Losing weight is also a HUGE way to help. It has made a big impact.

If I was you I would definitely go see a gyno or endo specialist. Or if nothing else just get on the pill. It regulates your periods and controls your hormones which helps with the acne and facial hair. I use to have to use vicodin or naproxen during my periodds because they were so heavy and painful, and after being on the pill consistenly they are now completely normal

Good luck!
 
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iluvgds4ever responded:
May I also suggest seeing an Endocrinologist. I too started having issues at the age of 34. High blood pressure, colitis, no periods, high sugars, extra hair growth, etc. For five years, I have been tested non-stop always being told: I was young, don't worry about it (no periods) and that I just needed to lose weight (my highest 276). It wasn't until the suggestion of one of my nursing instructors that I saw an Endocrinologist and was finally diagnosed with Cushing's Disease, last year. It was nice to finally have a doctor believe in me and take the time to order testing and get a diagnosis. You know your body better than anybody, don't ever give up until you get results. Best of luck.
 
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miamor343 replied to mel_MIMI's response:
I have suffered from PCOS for over 30 years. It is the cause of all of my health problems to date. The disease has caused damage to my heart and caused numerous problems with fertility, pregnancy and weight loss. The advice that you have been given on this forum is true.

I also run a PCOS blog and information on my website. www.jamiecontreras.com . If I can be of any help please let me know. The key is to find a doctor that you trust and who listens to your needs. Then surround yourself with information and be your own advocate. No one can understand you better than you can!

Best of luck in your healing!
Jamie
 
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Sansee1001 responded:
stay on your meds but seek a second and third opinion if needed. If you feel there is something wrong then listen to your body. There is times that women have painful periods BUT still get checked out please.
 
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senaitsm responded:
I wouldn't stop with one doctor. Seems to me the doctor just didn't want to look into it. I'm 23 and diagnosed four months ago, had the problem for the past three years but didn't think much of it. I had the same symptoms, my blood test read PCOS and the physical changes were pretty obvious. I don't have cysts but I have the syndrom.
 
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CarrieofCanada responded:
Don't forget to have them check your thyroid. Your symptoms sound a lot like mine were and I have PCOS and an underactive thyroid. The ultra-sound was probably the best tool to see multiple ovarian cysts though. And your hormone levels can fluctuate a lot, not just because of your menstrual cycle but also certain foods.
I recently started taking maca root to help balance my hormones and help my whole endocrine system. You should google about it. And don't give up, it can sometimes take years too figure it all out.
 
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pjrperry responded:
Try an endocrinologist.
 
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whitefrazier responded:
I was refered to a fertility specialist who diagnosed me with PCOS. You may want to go to a fertility specialist. Just a though. I do not and cannot have any children due to this condition.
 
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CorrieAnn67 responded:
Hi Dasher...it is frustrating when you can't get a confirmed diagnosis. It took three years for me to get one, and now I'm starting to question it - long story.

Some things to consider - the symptoms of PCOS are similar to other things, so it is important to get a good diagnosis of whatever is going on with you.

PCOS isn't a disease - it is a syndrome. While there is no "cure" for PCOS, it can be managed with diet and exercise. Once you know you have it, it gets much easier to manage.

You do not need to have to be polycystic (multiple cysts) ovaries to have PCOS. That was a long-ago requirements. I was diagnosed with PCOS 6 years ago and never had an ultrasound to check my ovaries until recently. My ovaries are completely normal.

PCOS does not automatically mean you cannot have children. It can make it difficult to conceive, since many women with PCOS don't ovulate regularly or at all. But plenty of women with PCOS have children.

Not every endocrinologist or gynecologists is up to speed on PCOS, what causes it, or realistic treatment. Personally, I would look for a holistic, or integrative doctor (internal medicine, endo or gyno) who is familiar with metabolic disorders...that's what PCOS basically is. I reproductive specialist can also help, even if you don't want to conceive. They are very familiar with PCOS, as it is one of the leading cause of infertility today.

For me, losing weight, changing my eating habits, exercising, and maintaining positive energy in all aspects of my life have helped.

Each woman will have needs that are unique to her. You need to learn about nutrition, how food and exercise impacts the body, and trust your instincts. What works for me, may not work for you.

Keep researching and don't take no for an answer. Email me at newsforcorrie at cox dot net if you'd like to chat some more.

Corrie Ann
 
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dasher672 replied to CorrieAnn67's response:
Thanks for all the support. I have an appointment on Tuesday with a gyno. I believe she will help me figure this out. I just picked her from my insurance list and I found out after that everyone I've talked to says she's a great doctor and really listens to her patients. My sister is a nurse and has worked with her before and says she won't stop until she has answers.

I've had my thyroid levels checked; I get them checked every year and they are a little low but normal. But my 2 older sisters have had thryoid issues one had the radiation and one had a gioter removed.

I've got my records and I recorded everyday of my period this month which didn't follow my month from June. I've printed out some of this page and link from Jane so I hope I'm prepared. I've talked to one of my older sisters who had periods worse than mine but she had a hystero when she was 40 I believe.

I'm a little nervous about going because I just usually go to my family doctor for a pap and don't discuss any other women issues; my mother was 40ish when she had me so she's from the old school of not discussing things. I'll keep you posted.
 
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Jomad responded:
dasher 672

Please go to a gyne as soon as possible. I had all these symptoms since I was 29, but ignored them. By the time I was in my mid-thirties I had moved from 105 lbs to 160 and could not get them off. I am still 165. I had to have surgery to remove cysts at the age of 41. Today I am pre-diabetic, hypertensive and overweight.

I don't want this to happen to you, so please go your gyne. He will diagnose if your GP cannot. And also get a second opinion. I did when I was diagnosed as PCOS at the age of 40.

Don't leave it too late. My cousin did and she died at 34 of endometrial cancer. Please take care of yourself.
 
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kathykatt replied to Jomad's response:
hi, i don't know what pcos is...but your symptoms don't sound like anything i'd worry about...the weight, hair growth, etc. can all be normal. some women get hair growth, its nothing to be alarmed about (especially italian descent and others) and if you eat high calorie foods you will weigh more. i'm not trying to make light of it. but you are not alone by any means. you have had appropriate tests. try not to worry, that will affect your BP. for your bad cramps, that i do identify with not now, but in the past, you can ask for pain medication. if your current dr. won't give you anything, i would see a gyn. there are many good options available. i do wish you well.


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