What do I do?!

[loofahlew]

This is going to be long, so I apologize in advance.

Ever since I first got my period when I was 12, my cycle has never been quite right, and I have never felt quite right. I would only have a period every month or so, and that has just been normal for me. I considered myself one of the lucky ones, because I was saving money on feminine hygeine products!

Well, in the past 4 years, my problems have gotten worse. I have only had 6 periods in 4 years, and then only because one was induced and I was placed on birth control for 6 months. Hair growth is out of control where I don't want it, and the hair on my head is starting to fall out. My weight has increased tremendously, and weight loss has become increasingly difficult. I have no sex drive, and frankly, don't feel much like a woman any more.

The problem is, after 4 years of medical expenses, I still don't know what is wrong or how to treat myself and get better. I just got married in June of '08, and my hubby and I want to have a baby. But having a child is hard when 1.) your sex drive doesn't exist, and 2.) when you don't have a cycle. I have been to 3 doctors so far, and they have all shrugged it off, as if it's not a problem to not have a period for 15 months or more. In 2 ultrasounds, my ovaries have shown no cysts, and blood tests show no signs of insulin resistance. So PCOS is not even considered. But if that's not what it is, then what is going on? Why can't anyone tell me what is wrong with me?

This whole situation has me near tears at least once a week, and I'm not really one to cry. I don't know what to do about it, because I don't know what I am up against. All I know is this is not normal. I just want one child, and then I won't ask any more questions. After that, my womb can shrivel up and die for all I care...lol.

I'm sure this is a story many of us have in common. Before you were diagnosed, how did you cope? What can I try to self treat my amenorrhea and infertility? If no one in the medical field is willing to help me, I need to do something on my own. I can't continue to try to get second opinions and have the same tests over and over. It's too expensive, too time-consuming, and far too mentally taxing.

Please help me!

[thenewmrs.m]

I feel the same way you do! My dr dismissed me and my ideas early on. I knew there was something wrong with me in my teens and she never listened. She told me I had PCOS but never did any formal testing (from what I understand) and I too want children. I am not getting married until this summer, but am trying to take a proactive approach. If you need someone to listen I just wanted you to know I'm here. I may not have answers, but I thought it was nice to know that someone else is going through exactly what I'm going through.

[Headyfeady3]

I suggest that you both check out the alternitive remidies section and really be an advocate for yourself. It took my hubby and I 9 years of TTC to get PG. There are alot of things that you can do to help yourself. I too was told that nothing was wrong with me and until I went to the DR and told him what I thought I had and that I wanted to get PG all they were doing was putting me on the pill. Make sure that you dont just take what you were delt lying down. There are so many things that you can do.

[loofahlew]

It is comforting to know that someone else shares my story. I actually go for my annual checkup with my doctor tomorrow, and I am hesitant to even say anything about the fact that I have had a cycle since I stopped taking the birth control in June. Every time I mention it, it's like we've never had the conversation before. It's always, "oh my gosh, REALLY?! That's not normal! (no crap) We should send you for an ultrasound." I'm not going for another...it will be another waste of money.

What are you doing right now to help with your symptoms? Are you just kind of waiting it out to see what happens, or are you doing anything special with your diet or taking any supplements? I'm really curious to know if people like us who haven't had much help from doctors have discovered ways to treat themselves.

I really appreciate you responding to me. Please stay in touch and let me know if you have any progress or breakthroughs. I wish you nothing but the best. Good luck on your upcoming marriage as well!

[loofahlew]

Heather, did you finally get an official diagnosis after all of your dealings with the doctor? When I go to the doctor tomorrow, I am going to let her know that we are actively trying to get pregnant, and see if she will get me hooked up with a fertility doc. I know that, just like with you, it's probably going to take a while, so I want to start right away with any treatment that I need.

And I will check out the alternative remedies on here. Thank you so much!

[Alisha1973]

I sort of know what yall are talking about. I DON'T have the hair loss, the acne, the oily skin, the dark patches of skin, the accessive hair on my body, or the irrigular periods (at least when I had periods). However, I am overweight, and I have had dermoid tumors grow on my ovaries. And I have been diagnosed with PCOS without having any formal tests done. Also I've been told that because I am overweight I must be IR without any kind of test to prove that theory. (Stupid me for taking my doctor's word for it.) It seems like I would be going along having regular periods like clock work and then BOOM I would have a dermoid tumor pop up. Now i'm starting to question if I have PCOS at all or if I have other problems all together. Now i'm going through what my doctor thinks is post surgical menapause. Now i'm questioning weither that is true or not. Anyone else ever have dermoid tumors?

[thenewmrs.m]

Good luck at the Dr.'s tomorrow. Let us know how it goes! I wouldn't keep anything from your Dr. if I were you. Let them know you've had a cycle. We do tend to get them every now and then don't we? To help with my symptoms I take Yasmin. That really helps with the hair control and I haven't gained any extra weight abnormally. What I mean is if I've gained weight it wasn't because of the Yasmin...just my chocolate habbit. I do have thinning hair and don't currently do anything about that yet. My mom works in the medical field and they tell me to start Rogain now because it'll really make a difference. But, my mom also has thin hair, so I don't know if my thinning hair is because of genetics or PCOS.
As far as my diet, I try to eat as healthy as possible. It's hard to stick to the 5 a day rule, well at least it is for me, but I'm doing my best. I stick to whole wheat or whole grains. I do love pasta, breads, and cereal though....not good. I don't take additional supplements. I hear they just don't really work. I try to get the vitamins and nutrients from the sources. What about you? Are you doing anything to help with your weight and such? I was considering Weight Watchers but I want to see if I'll be getting laid off before spending the money. I'll keep in touch. I hope you do as well. Good luck tomorrow!

[baby12uth43]

Alisha - I've had 1 dermoid tumor found - and removed. You can have PCOS and have dermoids. They are a special kind of hardened cyst that grow funky proteins (hair, etc..) inside. Think "Big, Fat, Greek Wedding" and the "bah-bopp-sea".

[loofahlew]

Well, I had my doctor's appointment yesterday. She doesn't want me to deal with any more frustration trying to get pregnant on my own, so she made an appointment for me with a gynecologist who specializes in fertility. That is great, but I have also found out that my insurance does not cover treatment for infertility. I find this absolutely ridiculous. If I happened to be physically able to keep popping babies out right and left and had no medical problem, the insurance would pay for that, wouldn't they? But since I want one child and obviously have some sort of medical problem that is preventing that, they won't do anything for me. I am absolutely appalled.

I am willing to pay out of pocket for fertility drugs, but I don't think I would ever take it as far as in vitro. For those of you that have paid out of pocket for fertility drugs, is it relatively affordable? I know we will have to cut corners while I'm going through treatment, but I think we could swing a few hundred every month.

I am sad about this, but I don't want to give up without at least trying.

[August]

I can't continue to try to get second opinions and have the same tests over and over. It's too expensive, too time-consuming, and far too mentally taxing.

One thing - you should not get the same test run over and over again by different doctors -- you should request copies of all of your lab results -I believe it is absolutely your right to have copies - if you do not have copies from each doctor you have consulted about these issues you likely need to go back and request them -- then before you have an appointment with any doctor you need to make a new set of copies of your copies to give to the doctor.

[loofahlew]

Oh, I absolutely agree, August. Fortunately I only allowed myself to have one duplicate test, but I'm certainly not allowing it again. As you go through all this stuff, you learn to get a little more stern with your doctors, don't you?

[August]

Exactly! And sorry if I told you something you already knew. I think it often goes better if you go into an appointment with a typed out set of questions and concern and objectives. I think you have to at least participate in the management of your own health - and treat it like you would if you were managing a business.

Sometimes it might make sense to recheck something with another lab test to compare over time - like if something like your medications have changed - or to run the same test and more than one specific point in your cycle.

[loofahlew]

Oh, don't apologize for anything...you were very helpful!

My appointment with the gyno is on 3/31, so I'm trying to do exactly what you said and type up a list of questions and concerns between now and then. I have a feeling that I'm going to get much more accomplished with this particular doctor. The endo I saw should have known what she was talking about, but 1.) she was new to her practice, and 2.) she specialized in diabetes care. I need someone who knows "female problems" specifically.