I have posted on this issue here before, but am more confused then ever and need some advice, if possible.

I am a petite (5'2 115 lbs), 23-year old female who has never had periods on her own. Currently, using birth control, I have them whenever I want. Provera was used to start them up.

Last year I saw a reproductive endocrinologist. He did hormone tests and told me that I do NOT have PCOS and there's just a missing connection between my brain and my ovaries. He says that everything is right up top and everything is right on the bottom, but the two aren't communicating to give me periods.

HOWEVER, I have done lots of research on PCOS and am not convinced I don't have it. I may be thin and my hormone levels may be normal, but I have always had bad skin and have never had a period on my own. Aren't those fairly telltale signs? I guess I'm wondering if there is a surefire way to know if you have PCOS or not, and what to do if you DO have it so you can get pregnant in the future. I am so scared that hesitating now may make it impossible to have a baby in the future, even though all three doctors I have seen assure me that, with medication, it should be no problem. Any words of wisdom would be greatly appreciated!!

If your endocrinologist did hormone tests and told you that you don't have it, I'm sure he's correct. I was diagnosed with PCOS after hormone tests. Usually, the egg cannot break out of the ovary causing the ovaries to become cystic. My skin was clear, but I did have these chin hairs (luckily I'm fair); could stand to lose 20 pounds, etc. You're certainly not overweight, do you have any unusual facial hair?

Have you had your thyroid checked? You might look into that, and I'd certainly would go back to your doctor if you're that concerned about future fertility, if only to inquire about it. Best of luck to you.

BTW, after being on the pill for awhile, my periods returned and have been regular for years...oh, and I do have two children that were conceived even though I had symptoms of PCOS. :)

Actually they are finding that even if the hormones check out fine one can still have PCOS. There are some women who actually have no signs whatsoever and can still have PCOS.
Was an ultrasound done? That can sometimes detect PCOS if hormone tests dont show anything. But you have to have a great tech and doctor to look at the ultrasound to know exactly what they are looking for.
Its funny because recently I am in the process of being diagnosed with PCOS. So far the only signs for me is my cycles started getting strange and I was gaining some weight even though I havent changed my diet or activities. We are still waiting for my Testosterone test to come back. The test so far that came back funny was my FSH level. But we are going to retest that here soon to make sure it wasnt just a fluke. Then the next step for me is ultrasound.
My doctor told me that there are some women who may not show signs of PCOS through their hormones but their bodies will show it other ways. It is just a matter of checking everything possible. Even then there isnt a surefire way to tell for sure. Some things it seems are just that way.

Thanks to both of you for replying.

It's just so frustrating because deep inside, I really do believe that PCOS is my problem. Why else wouldn't I be ovulating? "I don't know" is just not an acceptable answer to me, and that's all the doctor gave me!

I don't have any excess facial hair, and my skin has really cleared up since I was a teenager. He did an ultrasound and didn't see anything, though he had a VERY hard time finding my ovaries because they were so small and regressed from not ovulating. He didn't mention anything about seeing cysts, but he didn't push it too much because he could see I was in extreme pain. See, I also am EXTREMELY sensitive "down there." My gynocologist says my body acts as though it is constantly doing Kegals (sp?) My muscles are so tight that I can't relax them to allow her to take a pap test. She says this is a major sign of sexual abuse, but I certainly don't recall any such trauma! It's very frustrating, because I go through major pain just having a pap test (and that's with the smallest speculum!). I'm not sure if that relates to my internal problems in any way.

She suspected I might have something called Kallmann's syndrome, because I also have no sense of smell. Anyone know anything about this? After doing research, I kind of doubt that's the case because I don't fit the profile for that disease whatsoever.

Sigh. Well, I guess I'll set up another appointment with this doctor and ask him about my results. As I recall, he took tests of my thyroid, hypothalmus, and pituitary and came up with nothing. What's left to look at?

Quote: "My muscles are so tight that I can't relax them to allow her to take a pap test. She says this is a major sign of sexual abuse, but I certainly don't recall any such trauma! It's very frustrating, because I go through major pain just having a pap test (and that's with the smallest speculum!)."

Boy, I'm very surprised your doctor suggested sexual abuse to you like that! http://www.healthboards.com/ubb/t_down.gif Geesh, hasn't she heard that it can be from just plain nerves? If it makes you feel any better, I was exactly the same way before I lost my virginity. I was petrified of the doctor using the speculum and remember it hurting so bad that he stopped, and I assure you, I was not sexually abused in any way during my life. I think some women are just more sensitive, as you put it. To this day, even after having two babies, I tense up when I have my annual exam. Everyone is different when it comes to exams, and you and I just happen to tense up like that as I'm sure many other women do.

I generally like the specialty of Reproductive Endocrinology for being the better informed Doctors of the whole group of specialists we sometimes need.
However, just because one Doctor is a Reproductive Endocrinologist does not automatically make him infallible.
I'd get a second or a third opinion on that PCOS thing if my inner voice were telling me to keep looking.
Honor your unrest.
I'm one of those thin sisters myself.
My telltales signs are bad skin, and not just on my jaw line, and tight muscles.
Amoung other things.
My RE used the Glucose Tolerance Test for my definitive.
I am now taking Glucophage(Metformin)for my Pancreas.
It's made a wonderful and huge difference in my life.
The Pancreatic function with relation to the ovarys is one of the big problems.
Remember. PCOS is the S in SYNDROME. And Syndrome means many symptoms coming together. You could have some or all or none but the Doctor will call it as they see fit to be what they use for their guideline for their own practice of medicine.
It's largely a matter of diagnostic preference.
kat

Kat....does the glucose give you regular periods? I feel so barren and unwomanly knowing that I have never ovulated. I guess I would like to find SOME way to get things started down there so I am assured that my body will be able to do it when I need it to! When you say the glucose changed your life, how did it do so, if you don't mind sharing?

As for the sensitivity, I appreciate that information as well! The thing is, I don't really feel nervous about my exam. Also, I am very comfortable sexually with my boyfriend (though we are waiting to have intercourse until marriage). I don't feel like I'm tensing up, but she makes it sound like I am CONSTANTLY tense down there. Maybe that has something to do with my stress level....I suppose I am a high strung person, if I really think about it.

Anyway, thanks for your answers. I am going to visit my reproductive gynocologist again and see what he has to say to my questions, and perhaps get a second opinion. Maybe I will have him try another ultrasound to look at my ovaries? I really appreciate all you have said...every bit makes me feel better.

Eddie, The condition is actually Insulin Resistence.
With Insulin Resistence the cells in the body are not receptive to the Insulin the Pancreas is producing.
The Pancreas will tend to over produce insulin in the body and that hyperproduction of insulin causes a lot of body problems.
Hyperinsulinemia produces a problem called hyperandrogenism. That means that the body gets stimulated to over produce Androgens such as Testosterone. It's the excess androgenic hormones that interfere with ovulation and fertility.
If the cells are made to be more sensitive to the Insulin produced by the Pancreas then the Pancreas will stop the over production of Insulin and the theory is that the androgens will grow less prominent.
The medication used to facillitate insulin sensitivity of the cells is Metformin(generic) or Glucophage(brand name) This medication is the same medication given to diabetics for their Insulin Resistence.
Additionally some women might already be Diabetics so that needs to be checked.
Both Diabetics and Hypoglycemics have the problems of Insulin Resistence. The difference is that in the Diabetic the body has already stopped producing the required Insulin and in the Hypoglycemic the Pancreas is still in hyperproduction mode. Glucophage/metformin (the medication) is often used as a preventative medication for people who have Hypoglycemia to keep the Pancreas from going into failure and moving on into the progression of Diabetes.
I hope I'm explaining this right.
It gets a bit complicated.
I no longer have any ovaries at all. I had everything removed due to a huge disaster of problems.
I am still on Glucophage for my Insulin Resistence.
The addition of the medication to make my body cells more receptive to Insulin has made a huge difference in my whole body dynamic.
We are still in the process of refining and defining body problems but so far the medication helps to keep me out of so many body crisis' like feeling spacey or irritable or simply not feeling well. My energy levels are better. There is less pain in my body and the wild Palpitations of my heart which have earned me a hefty dose of a Beta Blocker to control my mysterious palpitations have started to come under better control.
I am not having near as many bouts with blood pressure crisis that I have had since the Hysterectomy a year ago. I've only been on the medication since November.
The big thing I just recently noticed is that I can now eat Oatmeal and Banannas with out throwing myself into a whole headachey mood slide edged with hunger and dizziness. It was pretty bad at one point.
With regards to your pain, that could be a related but somewhat different problem.
There are two things that come to mind when talking about pelvic pain.
(1) Adenomyosis. That is internal Endometriosis in which the endometrial tissue grows into the muscle of the Uterus. It is very easily missed and a very painful contition. If left to grow the eendometrium grows and causes the Uterus to begome enlarged and boggy. And believe me when I say this condition is EXTREMELY painful and has absolutely nothing to do with abuse and everything to do with valid and horrible organic pain. Just because the Gynecologist can't see it or feel it does not mean that it might not exist. As with pelvic adhesions, this problem usually can not be seen by imaging tests. I also had pathology tests done from biopsies and those came back clear too. My Surgeon wrote on her pre op report that I might have some slight Adenomyosis. The Pathology from my hysterectomy revealed EXTENSIVE adenomyosis.
So it's a real guessing game at some point.
(2)Endometriosis w/ Adhesions. This would be my next guess in the pain department. Also, where there is Adenomyosis there usually is some Endometriosis. And where there is Eendometriosis the body will often respond by producing scar like tissue called adhesions which grow as the endometriosis grows and eventually there are fibrous bands of stickey scar tissue that tend to stick the internal organs together.
I've had 2 surgeries in less than a year to address the problems of endometriosis and adhesions and I had one emergency surgery to address my colon which simply stopped working at one point. So this stuff just gets worse if you never get it correctly diagnosed and tended.
Because the Bowels and the Bladder are often involved in the adhesion problem there are good aantispasmodic medications that help the organs relax enough so the person is not in so much discomfort. The colon and the bladder both tend to get spastic when something is irritating them and having either endometriosis or adhesions or both growing on their exterior is real irritating so then there's a reaction.
The anti spasmodics are really helpful so you might want to tak to your Doctor to see if maybe that will help.
Well, I hope I have not made this too confusing.
It's a big complex subject but more information is becoming available so hopefully better diagnostic tools will happen along.
kat

Wow, your post was extremely informative and a bit overwhelming. Lots of what you say rings true to my own situation, but some does not. The pain I experience is really only external....right at the front of my vagina. For example, when my RE went to take an internal ultrasound, it hurt a LOT as he put it in, but not at all when he was moving it around to see my uterus. They both told me it's just a matter of muscles that are clenched too hard, so hopefully that is the case!

I'm interested to hear more about the colon problems you've had. I had a colonoscopy last year because I haven't been able to keep food in me. I had horrible diahrrea (still have no idea how to spell it!) as soon as I ate dinner every night. I am now on fiber pills and doing MUCH better...and the colonoscopy came out fine.

My blood pressure is very good (usually 90/60), my cholestrol is good (160 last time), but I do occasionally get dizzy spells for which I had an EEG last month. Nothing showed up. I have a lot of sinus infections/problems that may be causing the nausea and dizziness, but could this possibly be related?

Have I also mentioned I have no sense of smell? One doctor suggested Kallmann's Syndrome, but that's usually found in males and leads to an absence of developed sex organs and occasional mental retardation. That doesn't sound like me at all...other then no periods, I developed regularly and have a normal IQ.

It's so frustrating. Shouldn't all these doctors be able to diagnose what's wrong with me? I just want to feel good, feel fertile, and be able to live a "normal life." My mom suggests seeing an osteopath to look at all my symptoms....have you had any experience with one?

Thank you so much, I really appreciate everything you took the time to write!

Eddie, I have never been to an Osteopath. I have had a lot of very extensive Chiropractic work done to help deal with these body issues.
I've had many and different modalities with Body Therapy, I've had Acupuncture work done and even Hypnosis. Lots of alternative care work.
I'd have to say that each modality was able to contribute to the easing of some of the symptoms and body difficulties but largely, the problems were just as overwhelming to the less conventional of the healing professions as it was for the standard medical people.
So I think there may be a whole cluster of problems that tie into eachother and proper diagnostics requires a bit more than just one Doctor.
Right now I am finding that the more my different Doctors work together,through me,that the answers are becoming more clear.
So it is probably a really good idea to go ahead and see the Osteopath and see what ideas that kind of Doctor can come up with.

It's totally possible that your pain could be due to muscle tightness.
That would indeed be better than some of the other pelvic problems.
The thing to remember about conditions in the body that are somewhat hidden, is that the pain that you feel is not always the location of the pain source.
Internal pain(visceral pain)tends to radiate and bring on a pain in another part of the body that often casts confusion on the pain problem.
When I was doing my own journey from Doctor to Doctor
one of the Doctors I saw told me that my description of the pain did not make good anatomical sense.
That observation about the location and reality of my pain helped the Urologist come to the decision that I needed a laproscope to investigate the mysterious pain root. My Gastroenterologist had already come to that same point of view with regards to the whole pelvic disturbence issue.
There is just so much that can be causing a problem like you have described.

My Colon issues were/are a mess.
My Colon was found to be wrapped around the left ovary and both the ovary and the colon were stuck up against the musculature of the pelvic girdle.
The adhesions, that had endometriosis hidden in the adhesions,had to be cut away to free up the colon.
The compromised colon along with that severely enlaged and painful Uterus created all kinds of problems.
My colonoscopy came back as the picture of health.
For me, it was the attachment of the Adhesions to the exterior of the colon that has caused my Colon to be spastic.
20 days after my hysterectomy my body elimination functions quit working.
No bowel function and no urine function and my tachycardic heart was racing crazy wild and getting ready to check me out of consciousness.
Systems overload fail safe I suppose.
So if it does turn out to be Endometriosis and Adhesions, it's best to discuss treatment options with a good surgeon.
Even the surgery is not the best answer, but it sure does make a whole lot of sense when the destructive process has become such that life is being severely disrupted.
I didn't know anything about Kallmans syndrome so I took a look on a search engine. I think you might be right about those symptoms. But it wouldn't hurt to have the Doctor at least explore that thought if only to rule it out.
My sense of smell changed drastically after I had my hysterectomy.
One of the times I was in the ER with my colon acting up one of the ER doctors and I, got on the subject of ones sense of smell.
It was his thought that my sense of smell had changed due to the shift in my hormones. So the lack of scent sense could be a hormonal issue with out being specifically Kallmans. But definately, I'd keep mentioning that body condition to the Doctors and just ask if they think it is of any significant information while trying to find the answers for your body.
My sinus problems also got better and definately changed along with the whole hormonal shift.
I recently saw a Neurologist about my migraines.
It was his opinion that a true Sinus headache is rare.
He said that the most recent research was that more people are having a variation of a migraine that they were calling a sinus headache.
So that's just some food for thought to throw out there for one or another of the Doctors you see.
Always good to ask their opinions.
Best of Luck with the new Healing process,
kat

Wow, thanks again for your information and opinions. You certainly have dealt with a variety of health issues, but prove the point that the textbook case is not always the situation.

I will continue to get these problems looked at, and hope that my conditions aren't indicative of some of the things you mentioned. Thank you SO much for your advice and knowledge, you really are very helpful!

I think I have PCOS, even though several test showed negative. I did have very light periods, am slightly overweight and have problems with facial hair and acne. I was put on birth control(Yasmin) and told that if my ovaries did have cyst that this would make them become smaller. I am really curious to know if my ovaries are cystic, and would like to have an ultra sound. Should I have this done?

The cyst/cysts may or may not show up on
imaging tests. There also seems to be a lot of debate on which kind of Cyst might be what is called a functional cyst and a cyst of concern.
It's just hard to tell sometimes.
You will do better with having a consult with a doctor who treats PCOS and fertility problems.
Reproductive Endocrinologists are Gynecologists who have their specialty in Endocrine disorders and the whole PCOS thing is really an endocrine disorder.
If you get diagnosed the next part of the story goes with treatment and you would want a Doctor who knows what to do with the problem.
kat

Eddie, I am a woman with Kallmann Syndrome, and I know what you mean. I've looked on the websites and seen all of the symptoms I'm supposed to have, and that it's mostly found in men, but I'm guessing that there are varying degrees of symptoms. I don't have a sense of smell, and I didn't develop when I was supposed to (I had to take meds for that), and I also don't have a period naturally. I know you said that you developed normally, but I just thought I'd tell you my story, because I didn't know that ANYONE else had it when I got my diagnosis.