Will I ever feel NORMAL?

thincyster85 · 04-11-2007, 05:44 AM

When will things EVER get better?? I thought that once I was diagnosed with PCOS- the missing piece of the puzzle- everything would fall into place.

Will things ever get better?? My depressive disorder (or whatever mood disorder they want to call it this week) is just progressively getting worse. I finally thought I had found a good pdoc which I saw for about 5 mnths, when suddenly the office calls to tell me he is on leave - which he never came back from. Turns out he had to stop practicing there because of something with licensure. I thought I was finally going to get somewhere with this one..and now.....now a new doc who can't remember my name or what meds I am taking - confuses them regularly...you know the routine. It seems I have seen alot of pdocs who ....how do I word this.....well..they SUCK. They don't even know the pharmacology of half the drugs they are mixing together.
A Psychiatrist who had me on 6 meds at once told me to call in case of an emergency. Well I called one weekend when I became VERY ILL from a new drug. And guess what? He yelled at me on the phone for calling him during the weekend. It WASN'T even an inapropriate time. Luckily after stopping the medicine, puking for 4 days, and coming in and out of sleep I regained my health and switched doctors.

I am SO frustrated! Frustrated with the whole medical system. Don't even get me started on Gynocology or Endocrinology. You wouldn't believe the nurses and docs I've come across before getting diagnosed that treated me like sh*t. Arrrgh. The last nurse and doc I talked to acted like I was crazy, that my all symptoms didn't make sense so I must be making them up, and that my periods aren't irregular- I just don't keep track. I was SO SO pissed and demanded to see a specialist no matter what. They laughed and said sure why not. I wish they would have been there when I saw the Endocrinologist. He said right away that I was right- I DID INDEED have a hormone problem. Of course I'd never heard of PCOS then,... and the tests all revealed the obvious. I don't know HOW I would ever have been diagnosed if I wouldn't have been PROACTIVE about it. I wonder about all the girls that will live most their life wondering what the h*ll is wrong with them.
I just always felt that something was wrong with me.

But knowing hasn't helped yet....I mean ...I wonder when I will get better. Alot of studies are coming out that show that there is a connection between mood disorders (depressive/ and bipolar) with PCOS. And I have YET to find the right antidepressant or med combination to work. Being a guinea pig is a NIGHTMARE. I have been through several, and I mean several antidepressants, then stimulants, and mood stabilizers, and even antipsychotics though I've never been manic or anything. And I am am STILL just really depressed.
So I think that my 'depressive disorder' has everything to do with my hormones.. BUTcan't get my endocrine to treat it. She says "See a psychiatrist". So I'm in this constant shuffle.

I just don't know if I can't take it anymore. And what makes things worse is that I (Like alot of people) am VERY sensitive to synthetic hormones. Which means birth control MAKES ME MORE DEPRESSED (I became extremely suicidal on Ortho-tri-cylen Lo).
I've been through about ten different b.c. methods.

God I've been through so much...haven't seen any improvement, am trying to hold my life together, I'm broke trying to pay for all the healthcare I need, and am in constant fear of losing my bf because of my moods. And what do I have to expect? No babies? No sanity? Weight gain and diabetes? Oh how can I go on.....

Please give me hope. Please.

flubby · 04-11-2007, 09:53 AM

I'm so sorry you are having such a dreadful time. I don't know why doctors don't listen to women with pcos symptoms. Or any other symptoms for that matter.

I really feel for you suffering on top of all this with bad treatment when your medicine has made you ill.

Remember there are lots of us here who understand and care.

<3

P.s I am really with you on the birth control problems. It took me a long time to get over the upheaval of changing pills and I remember the terrible time I had getting care for other problems while I was not so stable.
I am as strong as an ox now and I go to my doctors like a robot with a list demanding what I am entitled to and asking for official reasons if anything is refused.
I hope you get some strength and peace of mind soon.
xx

KIKIinDC · 04-15-2007, 10:17 AM

I completely identify with what you wrote. I was diagnosed Dec. 12, 2006, and at first I was ecstatic because once I started taking metformin and celexa I felt more normal than ever before in my life. I am thankful for the weight loss from the metformin and diet change, but this month I experienced depression again, massive fatigue, a plateaued weight loss, and my period was messed up almost like it was before the met. I can't even get in to see the Endo doc until June 14th and my general practitioner (who can't remember my meds either) doesn't even test my hormone levels to see what's going on. She thinks it must be stress or something fabricated.

All I can say is stick with it. Fortunately, my husband and friends are around to help me through these times. I've been trying to exercise more (to get my seratonin up) and I've also been trying to minimize stress. At least we have this online forum to share our experiences. Even though you are feeling bad, your post helped me to feel a connection to you because of the similarities of what we're going through. Thank you for sharing your thoughts.

Again, I found myself also agreeing with you when it came to the issue of inept and uncaring doctors. After reading four books on PCOS and several others about Insulin Resistance, I get angry when I hear my doctor saying something that is completely WRONG and yet she is stating it as fact. For instance, she doesn't believe that depression is linked in any way to PCOS. Nice open mind...

Anyway, try to keep sane and look for the positive. Be kind to yourself and realize that there is a group of women on the site that are feeling what you're feeling. Keep your chin up, girl!

pal · 04-15-2007, 11:34 AM

I totally understand how you feel...that's why SC is such a great site for support. When I found out about PCOS, after years and years of symptoms and mood problems, it was like the missing puzzle piece for me, too. And then I had to do the round of doctors (again!) and nobody seemed to care or understand what it meant to me. Since so little is known about PCOS, we are indeed the guinea pigs, and need to be pro-active because no one else knows what this is like. But it's tough, and most of the time you're not only sick, but also alone!

I've got my PCOS pretty well under control, so, YES, there is hope!!! I even have the moods under control (Seroquel works for me), so it's possible. Believe in yourself enough so you keep at this til you find the combo (docs, drugs, lifestyle) that will help you.

I was ranting to my Pdoc about no one believing me about PCOS, and she asked me why that was so important to me...she said there's alot of things in medicine that doctors don't understand. I've been working on that concept. I KNOW I've got PCOS, that's what's important! I can change and arrange my lifestyle to accomodate my condition. What other people think is their problem!

Fuzzy Bear · 04-15-2007, 11:41 AM

Quote:

Originally Posted by thincyster85

When will things EVER get better?? I thought that once I was diagnosed with PCOS- the missing piece of the puzzle- everything would fall into place.
Please give me hope. Please.

Honey, I think all of us here know what you are talking about.

I will give you hope, because there is always hope, even with this nasty thing we have in our lives.
You are young. If I had been diagnosed at your age properly and put on the medications even of those times, I might not be the health mess I am today at 49. You have so much more to be able to try than I did at your age. You are far more informed than I could have been, and Can be Proactive ~ we followed our doctors orders and never questioned if they knew or didn't know. It was my fault for being less active in my own health, but I naively thought a 'specialist' meant I shouldn't have to question his knowledge. Knowing better now has made a big difference in my life ~ but it took too many years to have the knowledge myself for it to give me a better healthier long life. You have the knowledge at your fingertips and this forum to help you find your way.
I have Major Depressive Disorder (hehe I put MDD behind my name sometimes as a joke) and for years I was not medicated properly and as my depression worsened, they just upped the dose of what I was taking. When I finally had a psychotherapist to deal with my depressions, my medications were totally changed because the old meds were not working. We tried many meds until we finally found that the combination of Wellbutrin and Effexor was what I needed. She still looks up meds in her Blue Book of Drugs for me when she's considering adding, or changing anything.
So you see, you have a world that didn't exist 20+years ago when I was wondering if I'd ever feel Normal again. Believe me YOU HAVE HOPE!!
Keep looking for the right doctor for yourself. Interview them, don't let them interview you. Go in with a list of questions to assess the knowledge the doctor has of your health concerns. We can not 'expect' every doctor to be up to date with all the medical changes that are in the medical journals etc. Some doctors are more familiar because they've had other patients with the same concerns. Some because they have someone close to them that has had the same run-around treatment we have had to endure. (My primary care doctor is knowledgeable about diabetes because her grandmother went blind because of it)
Take the bull by the horn, so to speak and remain proactive in your fight for proper treatment.
So many of our cysters have fought and won. You can do it ~ we are all here with you rooting for you too.

Your letter had me thinking about how we can inform a physician we are meeting with for the first time about our concerns and find out their abilities to address those concerns with success. I wrote a letter to a Physican with a vague notion to make it sound like you are looking for a prospective doctor, not that they are looking for prospective patients. (if you can understand that?)
I thought I'd attach it to see what you think... it's just an idea so don't worry if you want to criticize it. Or even toss the idea out completely. I thought you could either offer the letter at the first appointment for them to read before any discussion, or it could be sent prior to making an appointment.
Listen to our cysters and you will find the strength to keep on going!

I hope I've helped give you some hope!!

Fuzzy Bear

thincyster85 · 04-16-2007, 11:38 PM

Thanks you guys for replying to my post. I've been having such a hard time and it really does help to know that others are there for support and have gone through the same things. Thank you for giving me some hope to hold onto Fuzzy Bear, pal, KIKIindc, and flubby. Thank you for the attachment Flubby - I found it useful today when I went to see my endocrine. Although I had a very bad experience..
I go to the University of Iowa Hospital Endocrine Clinic and every time I have an appointment I have a different doctor.

I had an appointment this morning. I had a student doctor who didn't seem to know what PCOS was. It was frustrating enough waiting in the office for an hour just to see someone and then to get her. So she said she would go ask one of the head docs and yet I waited another hour until finally the PCOS specialist came in. I've had a couple Endocrines tell me that it is necessary to be on birth control to prevent from getting cysts and cancer and such. Well First of all she came in, sat down and said "I'm afraid you have exhausted all of your birth control options. If this one gives you a headache, then all will." Though that doesn't seem true to me with past experience. She then went on to tell that I don't even need to be on birth control and that I should just deal with my acne with topical treatments and get new psych meds. I told her that I have 'exhausted' all acne treatments and was finally put on Accutane which didn't do a thing for my acne. And my psychiatrist is having trouble finding a new medicine combination because I've been on almost all of them. So basically every doctor has said those same words to me.
You've exhausted all your options. We don't know what else to do for you.
She said there were no other treatment options unless I just wanted to keep taking it and go to a migraine specialist- although I don't usually get migraines. It was from the Nuvaring. I honest to god said to her "you have got to be kidding me, telling me that there is nothing else I can do or take." This endocrinology field was my last way to find an answer. She went on to tell me that I shouldn't blame all my physical and mental problems on PCOS. I was so upset when she finally said- "you know I don't think you even have it"-" who diagnosed you and with what evidence?" I just wanted to cry or to hit her or something. She didn't even know me or check my record. I had an ultrasound that showed polycystic ovaries, and I have all the symptoms except weight problems. The guy who diagnosed me said he had been treating this for 40 years. I just could't believe I came across yet another person who wants to deny I have it and treat me like crap. It was like the LAST STRAW. My life fells like a bad dream like I have to experience over and over.
I said "what about that study done here about mood disorder and PCOS?" She replied that she did that study and that I just interpreted it wrong. She said that it excludes me because I don't have Major depressive disorder. But I DO have a depressive disorder..dystymia that is honestly progressing up to that. Hell maybe it is Major depressive disorder because I have not had a psych long enough to diagnose me correctly and it has so much interferred with my life that I have dropped out of school and have quit my job because I'm too depressed to do anything. Oh man I was so upset, I just left in tears and my boyfriend came home from work early because I was talking about suicide. I'm still shakin up because basically it seems no doctor wants to help me. I don't know what to think, how to feel, or what to do. And I'd like people to spread the word- this is the lady who did the recent study/survey at the University of Iowa that has been posted on soulcysters. She smashed all my hope of ever getting better or ever feeling normal again.
So the hope that you guys are giving me...it is really needed and I'm hanging onto it as much is I can. I don't know how much of this crap I can keep going through.

thincyster85 · 04-16-2007, 11:41 PM

and by the way, I will no longer seek treatment at the UNIVERSITY OF IOWA HOSIPTAL.

Fuzzy Bear · 04-18-2007, 10:53 AM

I'm so sorry you are having so much trouble with the doctors.

Please check out the find a doctor board and find someone in Iowa that has a doctor that knows about PCOS and see if you can be referred to them. Just remember that you can go to another doctor if the one you go to can't help you, the next one may be more familiar with what's going on with you. I guess it may depend on whether they've ever come across the same kind of thing before, since we all seem to have variations of the same thing much of the time.

Honey, no matter what you do, you are important to other people. Whether it's your cysters, your bf, your family or even someone you smiled at on a day their lives were on a downward turn... Keep up your spirits telling yourself if they can't find help then you'll be more stubborn than they are and YOU can try things that sound totally out of whack to others, but may work for you!

I had acne when I was in grade 6 ~ the only one that had started puberty and the only one with pimples!! My "special" name was crater face~ omg I felt so awful and alone...
I used rubbing alcohol and cleaned my face every day (more than once sometimes) and I was lucky because they passed and I didn't seem to get them again in that amount. I've been told that rubbing alcohol is really bad for the skin like that and I was lucky I hadn't hurt it when I did it, but I have the kind of skin today that doesn't show my age. No wrinkles, no blemishes and noticeably nice skin that people have commented shouldn't be allowed on a 49 yr old lol

I have a g/f that had a major problem with her acne too and I think she found an herb that helped. I'll write her right now and ask how it's doing and what she used. I am pretty sure she has PCOS as well, although she's not the type to go and be diagnosed, so maybe what she used/uses will help you too. I'll be sure to post anything she tells me worked for her.
I do know that some of the things on the market used to make her skin burn and turn bright red, and her dermatologist told her that she should continue using it anyways, if you can imagine!! She never went back to that doctor and I think she dealt with it on her own with help from friends and the net.

Working together, our cysters will help you find something to help you, I'm willing to bet on it!
Hang in there.
Remember we are all rooting for you!!

Fuzzy Bear

Fuzzy Bear · 04-18-2007, 04:06 PM

Hi again
thincyster85 I have something that my g/f told me this morning that will help I think (I hope!!!)

Believe it or not, she uses toothpaste ~ regular ~ and puts it on at night then washes it off in the morning. she says it has always worked for her and it even takes the red away from where the pimple was!!

I sure hope it works for you and any of the other cysters that are having problems with acne.
I wrote to my other g/f this morning too and will post when I get an answer from her too.
Please be sure to let me know if you find it a success. I'm praying that it will be!!

Fuzzy Bear

flubby · 04-18-2007, 04:52 PM

Quote:

Originally Posted by thincyster85

She went on to tell me that I shouldn't blame all my physical and mental problems on PCOS. I was so upset when she finally said- "you know I don't think you even have it"-" who diagnosed you and with what evidence?" I just wanted to cry or to hit her or something. She didn't even know me or check my record. I had an ultrasound that showed polycystic ovaries, and I have all the symptoms except weight problems. The guy who diagnosed me said he had been treating this for 40 years.

I would write and complain about that. Seriously.

aphrael00 · 04-20-2007, 11:33 PM

Hi...

I just read your post and I feel like I can relate to you even though it sounds like you've gone through so much more than I have. Seriously, do they not teach ANYTHING about actual patient CARE at these places? I have heard so many reports on here of people whose doctors accused them of making stuff up... what a nightmare.

I think the most frustrating things about this whole process are that it seems like people take an interest in you/your case for about 15 minutes and then they're off to whatever they have next, while we have to wait a month or two to see if things are even working. And then when you're trying out multiple medications, how the heck are you even supposed to know what side effect is from what?

I was diagnosed with depression (this actually came first) in August of 2006 after resisting going on medication for years... I finally reached my breaking point. I was on 225 mg of Effexor, which I wanted to get off of a while ago but then I went to a new doc who said to try increasing it first... well, I've had major memory issues with Effexor and I feel like a zombie... then I started to panic cause I read about all these other people who have had problems with it, and my doc is on vacation (of course) so I am starting to wean myself off it... I am not staying on this a day longer than necessary.

I, too, am totally frustrated with the acne thing, I feel like I've tried so many topical things, proactiv worked for a while but now not so much, and I'm on my 2nd BCP. (FemCon) which isn't causing any major side effects but isn't really doin much either, either for my regularity or my skin.

I was diagnosed with PCOS in January of 2007 and that one doc especially (my gyn) has been great. I'm on Met which has been fabulous.

But the other stuff... it's like, I can't even remember how I'm feeling from one day to the next, it's all a blur, I absolutely do not feel like myself, and the process of being a guinea pig for the next however long makes me terrified. I am blessed with a super supportive boss (who actually knows the details of most of this as we have a very good relationship, and she is fine with me taking whatever time I need to deal with it) and a great bf... although we're trying to decide whether to get married, and one second I want to and the next I want nothing to do with him, and I don't know if that's the meds (or which one!) or something to do with sexual side effects or just me or the depression or something altogether different... it's like walking through a maze of mirrors and you just get more and more confused.

Sorry, that was much more about me than of help to you, I think... but all that to say that I hear your cry of frustration and despair and I care, and so many others on here do too, and there really ARE good doctors out there... I wonder if, with your horrible experiences with them, if you might have better luck with your treatment if you put a hold on looking for new medications and just spent a while interviewing doctors. I mean, nothing's guaranteed that someone will be there forever, but are there other people you can get referrals from, even for someone who is compassionate and actually listens to what you have to say? I would say it matters less what kind of hotshot doctor they are than if they're someone who will work with you and hunt for answers...

In any case... I don't know what else in terms of medications you can try, but there may be more out there... and there are CERTAINLY better doctors. And those doctors would be the ones to absolutely make sure they are doing everything they can for you, rather than blowing you off or calling you a liar!!!!!

thincyster85 · 04-28-2007, 12:45 PM

Hey guys. My therapist heard about a medical doctor that deals with depression related to hormones. So I scheduled an appointment and was surprised to find someone that actually cared and wants to make sense of my situation. She added some meds and a few weeks later I am feeling much better. After years of trying meds with psychiatrists I never got anywhere and with her, a regualr doctor she is already helping me so much. I am making good progress and pray that things will stay this way. I thank you all for your support, kind words, and advice. I guess after going through so many bad things for so long...something good finally has to come about. Thanks for helping me through a rough point. : )

Coz · 04-28-2007, 02:48 PM

I'm glad that you are feeling better now and I hope that things continue to improve for you.

It's amazing how much finding someone who is willing to listen to you can make a difference.

Fuzzy Bear · 04-28-2007, 11:32 PM

OH WOW!! That's fantastic news!!

I'm so happy that you found someone!

You should tell her about this forum and that we need more doctors that are trained the way she was to go to all over the world. Maybe she can tell you some names and places for some of the cysters that could use a doctor who cares and is knowledgeable about hormonal problems.

I did want to mention to aphrael00, I hope you are looking for someone to talk to too. You sound like you need someone that can help you sort out your feelings for you. I Love it personally. I have had a therapist for years, and I've learned a lot, but it still helps to be able to use her as a sounding board that will help me work through a problem using the skills she teaches me.
I've been on Effexor for years. We tried it alone for a year, I think, and once we were happy with how it did help, we added Wellbutrin to help with the things that Effexor didn't help with. I wonder if that was part of the problem you have had with it? Maybe the way Effexor works isn't what you need to be treated for, so it's not effective. It really takes someone that is educated in the way the brain works with the hormones and chemicals in it. I just wonder if you had a therapist whether they would be more able to prescribe you with a medication that would be beneficial to you, rather than a little bit scary. You need to be monitored much more closely if I understand it correctly. I was going for appt's every week to 2 weeks when we were at the beginning of working out my medications. If I missed an appt. she was concerned and made sure I couldn't have my meds re-issued without making an appt. so she could be sure of the meds effects. Honestly, I feel so much better than I did when I first began my therapy. I still have serious depressions at times, but I'm better than I was and that makes it worth while.
thincyster85 ~ I hope things keep improving so you can enjoy your life again.
aphrael00 ~

I hope you stick around the forum and find what you need to help you begin to get your spirits up. There are some amazing people on this board, and I know there will be lots of cysters that will help you along your way to getting better.

Fuzzy Bear

Beverlydawn76 · 04-29-2007, 03:08 PM

I am so sorry you have gone through all of this. I know how hard it all can be. I was diagnosed with PCOS in 2000 and the ONLY thing I was told was to lose weight. The Dr's kept making it seem like it was my fault. I was just diagnosed with Bi-Polar, General Anxiety Disorder and depression, and this after YEARS of searching for answers.
I am on Effexor which I really like for my depression. I am also taking valproic-acid for bi-polar and was just put on Metformin.
I do however have a beautiful 3 yr old son, but it took me 4 years to conceive him. Those were 4 long and hard years.
My current therapist is really good, but I have yet to actually see a pdoc. My family Dr. diagnosed the bi-polar which my therapist isn't sure she agrees with. So yes it is all VERY frustrating!!!
I thought I would never have children and it was the ONE thing in life I really wanted. My ex and I were in the process of trying to adopt when I finally got pregnant.
I hope that you find the right Drs who are able to help you out in every way you need them to. Hang in there and NEVER let anyone tell you that you are CRAZY. I have heard that all my life from Dr's, from when I was 5 and having migraines and the Dr's said I was too young and faking it (which of course mad my parents angry at me) to being 7 or 8 and having Dr's say that I was faking intestinal pains...we know know that I have IBS.

Keep going and never give up, I send my prayers to you