Docs ignoring symptoms

Hi, I'm new to OH and waiting for insurance auth for RNY. I wanted to share my story because I wonder if anyone else has had similar (depressing) experiences with the docs and subsequent health issues. I started menses when I was 12. For the next year, I had a 10 day period (very heavy the first 3 days) with 15 days off and cramps so bad you could actually see them from the outside. When I was 13, depressed, an insomniac, and severely anemic the (Army) docs finally agreed to put me on BCP. That worked for about a year, normal timing and only 1 day of cramps bad enough to take Motrin (2400 mg - ic****very year after that, I had to be put on the next higher dosage because I started breakthrough bleeding and the cramps would come back. By the time I was 23 my dosage was so high my ovaries actually started to get inflammed and I was packing on the weight.  I decided enough was enough and asked my OB/GYN to put me on Synarel - which threw me into pseudo-menopause state. God, it was WONDERFUL - no more pain and I actually lost a few lbs. I could only take it for 6 mos, so she did a pelvic lap to see if I had endometriosis. Those test results came back negative, but I wasn't going to go back to all that pain and misery so I decided to get a partial hysterectomy instead (just the uterus). My doc didn't want to and the insurance wouldn't pay for it, but I self-paid (giving up the rest of my college fund) and got it done right after my 24th birthday. Believe me, I have no regrets on that front! The whole time this was going on and ever since I kept asking the docs if there was something wrong with my hormones - test after test came back in "normal range", but no one ever looked to see if they were BALANCED. I was having all sorts of symptoms: hypoglycemia then hyperglycemia, exercise and diet resistant weight gain, insulin resistance, acne, sl facial hair and thicker body hair (TMI - my butt is hairier than my hubby's), dark patches, chronic fatigue, etc. But the docs kept saying the test results confirmed that my sex and thyroid hormone levels were  "OK". About 3 years ago, I finally found an OB/GYN who had lots of experience with PCOS patients. He took about 30 minutes after reviewing my symptoms and history to determine that I had PCOS and put me on Metformin. Metformin really gave me GI distress, but I kept taking it for a year. I did lose some weight in conjunction with a physician program... but hit a plateau and gained it all back (so stopped taking the meds).   It seems the major issue was that my ovaries are asymptomatic and the blood tests weren't indicating anything definitively PCOS --- but the docs were ignoring the symptoms and the imbalance (male hormones are higher than female hormones, etc.). Now, my new PCP also tells me that my thyroid (TSH) is high for patients that are experiencing symptoms even though it is in a normal range for people who aren't. So she's ordering a new panel and waiting until I'm post-WLS to try thyroid replacement. What's going on here? Is this a common trend? How much pain and frustration have you Cysters been through getting properly diagnosed and treated? I know I can't be the only one   Thanks for your stories, Jennine (Plickety Cat)

Hi there!  I too have PCOS and it was only dx when I was going through fertility treatments.  Overall I don't have alot of the major symptoms, nor the cycst on my ovaries, but I did have enough insulin resistance to cause the imbalance.

Just a note, if you ask for extended release metformin, it was WAY better on my tummy than the regular, and I've heard alot of friends say the same!

I think for those of us that don't have the classic symptoms, most docs don't know to even look for it.

Sorry it took so long for you to be properly dx.  Hopefully they can get things under control for you!  Good luck!

With the exception of the partial hysterectomy, I could have very well written what you just wrote. I just wrote a response to another thread pretty much telling my story, but I'll go into greater detail here. I started menses when I was 13...and for a "beginner" my flow was pretty heavy. Ever since I started I would have PAINFUL heavy periods, sometimes I'd be bedridden for 2 or 3 days the pain was so bad. Nothing was ever done because my mom was the same way so we chalked it up to it "running in the family". Fast forward...I got pregnant with my oldest son at 19. I weighed 120lbs at the time. At time of delivery I weighed 173 lbs. *note, I had a few stray, dark hairs under my chin* At my 6 week check up, I weighed 185 lbs. I was depressed and wondered what was wrong with me. I "ballooned" to 198 lbs. Within that year, I started dropping weight, I have no idea how, but I did. By the time my son was 2, I weighed 135-140 lbs. Six months later, I got pregnant with my second son. At time of delivery, I weighed 180 lbs. At that time for birth control, I had chosen Depo Provera. I'd asked the doc about potential weight gain and he said 5 lbs a year or so. Awesome! Sign me up. I got down to 155 lbs and then all of a sudden started gaining again. I was gaining 5 lbs per week. My pcp was concerned and ran tests...cholesterol and what not. He suggested that I contact my gyno because he thought I had PCOS. I went to gyno and he said, "I already tested you for that last year." I said, "isn't it possible for me to have it and then it show up later?" "No, not really." Ok fine. I go back to my primary and he puts me on Redux. I was on that for 3 months and got down to 176 lbs. But then they had the recall and I stopped taking it. My weight skyrocketed once again. I can't tell you how much I weighed because I refused to step on a scale. Meanwhile, I'm getting more dark facial hair that I'm now bleaching because it's too much to pluck. I forgot to mention...gyno ran those same tests as you had, and he said, "Everything is in the normal range...your testosterone is a little elevated, but nothing to be concerned with." I got side tracked...after my 3rd Depo shot, I started a period...one that lasted 93 days. I was put on Provera to try to stop it, another increased dose of Provera, and finally 3 months of BCPs in one week to get it to stop. Huge long story short, I kept having new symptoms, would go back to my gyno and he'd dismiss me. My PCP recommended yet again that I go see my gyno because he REALLY thinks I have PCOS. So I went, and when I told my gyno that PCP thinks I have PCOS, he said, "oh, yeah, that's probably all it is." I found a new gyno right after that, was in her office 15 minutes, she took one look at me and my history and said, "absolutely you have this." 10 years I'd been saying it and my doc ignored me. I was 265 lbs now at that point and so angry. I was angry because I felt like if he would have dealt with it then, I wouldn't be at 265 lbs. My new gyno put me on Metformin, and we worked on an eating plan, and I lost 50 lbs within a few months. I maintained that for roughly a year and a half and the weight started piling back on. It was at that point that I decided I needed to find a permanent weight loss solution and asked my gyno about surgery. I was nervous to bring it up thinking that she would be opposed, but she agreed that I could most definitely benefit from it. Now I'm 6 months post weight loss surgery, I'm down 60lbs from 240lbs on the date of surgery. My periods have been regular, relatively pain free, are much lighter (a regular flow) and last 4-5 days as opposed to 7 or longer. My facial hair has thinned some and doesn't grow as quickly, I have no new skin tags, and the dark, leathery skin on my neck and between my breasts, is no more. I hope this helps and that you're able to find relief soon. By the way, I did ask my gyno at one point about doing a hysterecotomy since that's what's causing all the trouble, and I wouldn't be needing it since I already have 3 kids. She said no...the ovaries really are needed as long as they function...blah blah blah. I guess I'm glad she refused, though if she hadn't, I'd not have to worry about BC right now...LOL. Feel free to contact me if you want to share some more, have questions, etc. I'd be more than happy to. Shawn

You are most definitely not alone! It took 6 years fighting with doctors before I was diagnosed with PCOS. I went through several PCPs before finding one that would listen to me. It was a heartbreaking time for me. The doctors told me so many times that there was nothing wrong with me that I seriously started to believe that I was a hypochondriac. I changed PCPs one more time and as a last ditch effort told her all of my symptoms. She immediately recognized that the combination of symptoms sounded like PCOS and ran the correct tests (beforehand, the only test a doc would run was thyroid which always came back at the right levels). It was so frustrating to never be believed. I was so unhappy and thought I had mental problems because I was so certain there was something wrong with my body but all the doctors told me there was nothing physically wrong with me. In the time it took me to finally get diagnosed, my symptoms were at least 10 times as bad as when I began asking for help, and I had gained over 100 lbs. Most doctors don't understand PCOS very well. Even after my diagnosis when I was seeing an endocrinologist that was supposed to be the most knowledgeable in my area on PCOS, I was told that physicians really don't understand enough about the condition to have universal treatments for patients. I would cry in his office because no medication was helping my symptoms, and he would only tell me that the medical profession has more questions than answers about PCOS and apologized to me for not being able to help more. I am 4 weeks 3 days post op and am losing weight instead of gaining for the first time in 10 years. I really hope that once I'm back down to a healthy weight, I'll see some relief from my PCOS symptoms.

Yep, you all are telling my story!  I was in my early thirties and had been to too many doctors complaining about the same thing: horrible periods, weight gain, fatigue, etc. I finally threw a fit with my OBGYN and demanded that he figure out what was wrong with me. I will never forget him explaining to me that he did know of one condition that caused the problems that I was having, but, he explained, women with that particular problem were a lot heavier than I was (I was 235# at that time). "Well Doc, do you think that they just woke up one morning weighing 400 pounds or perhaps they GOT THAT WAY BY STEADILY GAINING JUST LIKE I AM??"  Anyway, he billed my insurance for a panel of the right bloodwork and a mental health consultation (^%&^%!), then came back with the diagnosis of PCOS.  It took years of pain, frustration, and confusion to finally find a doc that could tell me that what was happening to me was "real" and not just a case of needing to exercise more and eat less or that it was all just in my head.  Sorry if I sound really cranky about the whole experience, but only God knows how many tears I cried and how many times I begged some doc or another to explain to me why I was so tired, why my periods hurt badly, and why I wasn't eating much of anything but still gaining weight like crazy.  On the bright side, I was able to tell my mother, my little sister, and several of my cousins what tests to ask for, what to look for, and how to get the help that I couldn't for so many years. My sister was able to get intervention ( and to understand what was happening to her) in her early twenties instead of going through it for two decades like I did. That in itself was worth a lot. I don't understand why there is not more research into this condition as it affects so many and causes so much misery to those that it does affect. So many doctors don't have any idea about the symptoms of this disorder, how to increase patient quality of life, or even how to properly medicate it. I get tired of having to educate my physicians when I move and having to deal with those who have a whole mental filing cabinet full of misinformation.  I'm not taking anything for it now, as Metformin really did tear my stomach up awfully (I hadn't heard of the timed release until reading about it here), and the Actos that my old GP prescribed didn't seem to do anything. I grow chin hairs and have very little problem with facial acne except with my monthlies, and now that I have been bypassed, the weight situation is reversing itself. I've talked to my PCP about PCOS a little, but after all of this, I just seem to prefer not mentioning it as the frustration just isn't worth it.