Getting pregnant without knowing I had PCOS (although the doctors did)

by Anonymous

(Ed. note: This is a heart-felt story of a woman whose doctor did not tell her she had PCOS.)

I was 19 years old and married to a sailor. I had very irregular periods if any at all. At 16 my mother took me to the "best" OB/Gyn's in the Bay Area. They put me on birth control pills.

I ended up wanted to get pregnant at 19 because my husband was leaving to go overseas. We of course had been trying for 2 years (when we married) and nothing happened.

My doctor sent me to a doctor who was a "fertility specialist" I'd never heard anything about it, but I went to see him. He did what seemed like a million tests on me including "blowing out my tubes" (don't know the medical term) and cutting off a wedge of my right ovary.

Nothing worked. So he put me on a dose of Clomid. I was given 10 pills. I had to take my temperature each morning and log it, and hope that it would "dip" at one point.

My husband was on duty on the ship one morning when my temperature actually dipped!! I called him with an emergency call saying he must come home immediately. Remember I was only 19. I told him my temp had dropped and he needed to get himself home right then. He told something to his commander and he ended up taking off the next 4 days.

I remember how stupid I felt with holding my feet in the air for 20 minutes after sex. We tried to make it funny but in the end it caused our marriage to end. I actually got pregnant on this first try. But 6 weeks later I began to bleed. I was put on bed rest and had to be given this very painful shot for the rest of my pregnancy.

We stayed together for 7 years, but the stress of going thru this fertility work up really was the beginning of the end of our marriage. When two people who are seemingly healthy aren't able to do the most common thing that the lowest form of "life" is able to do, and that's to procreate, it puts a big damper on your sex life!! We tried many more times but never could get pregnant again.

We adopted soon after the last attempt. This was not a good experience because not all members of our family were willing to accept an adopted baby.

When we divorced I ended up going to work for the very doctor who helped me get pregnant. I found my chart in the basement one day and that's when I saw written all over it "Patient suffers from PCOS, is likely never to have a child"

Then also in that chart was all the information of when I had to have the total hysterectomy due to peritonitis from a D&C due to some irregular bleeding. I made the mistake of reading the pathology report.

And in that report was stated "Many ova" I've never been able to get over that.......knowing there were "many ova" they were able to see under the microscope during the pathology examination, and I felt like everyone of them were my children.

I know this sounds ridiculous, but to me, it was actually seeing what could have been children of mine if I hadn't had that hysterectomy. Although there was no other choice due to how badly I was infected.

So I cherish my little boy who now is 39 years old. He was born at 7 1/2 months pregnant and he weighed 5 lbs. 15 oz. and was 18 1/2 inches long. They said he would have been very big if I had gone full term.

I often wonder now that if I had been told I had PCOS way back when they first diagnosed it, would they have done other things to help me get pregnant? Or was it just too early in the "infertility information??" Now I am looking at 60 years of age in January.

In 2005 I went to Maui for a wonderful vacation and on the 3rd day I could literally not get out of bed. My feet were so swollen, my fingers couldn't manage to let me put my rings on them. I had obviously blown up like a balloon. And for what reason? When we got there I was so happy and in 10 days I was wheeled back onto the plane by wheelchair and from then to now I have suffered from putting 2 pounds on per day and because I was thin when this started my doctors aren't concerned that this could have anything to do with the PCOS.

They say since my ovaries are gone, I couldn't possibly have PCOS anymore. I brought articles to him and he wasn't interested. I begged him to check my cortisol levels or my insulin intolerance but he said he already checked me for the Cortisol...although I never heard a thing about it.

And no one has talked about insulin intolerance.

I'm actually very lucky because beside of having one biological child, I adopted a little girl and raised a step son who lived with my 2nd husband. We have been married 31 years now, and he has gone thru so many physical problems with me.

My triglycerides were 900 at one time.....they are around 350 now. My cholesterol is 300.......I had the double stranded dna test for Lupus and it came out at Strongly Positive. The numbers were 169 and the normal high was 39. So 2 dr.s think I have Lupus and 2 doctors say absolutely not.

I've seen every doctor I can imagine but all I wish is that I could find a doctor willing to look into this fluid retention that won't go away.........check my cortisol levels for real. And also my insulin intolerance.

But I risk losing my doctor who really is a wonderful doctor except for this one problem. Lately, my gall bladder stopped functioning and was removed, I have severe carpal tunnel in my right arm. I've had 7 back surgeries and many other surgeries due to injuries.

I doubt this will ever be published but it felt good to write it out. It's true that depression can come along with PCOS......I also have RSD (Reflex Sympathetic Dystrophy) due to being hit by that truck. That also causes depression.

The smiles on my grandchildren's faces are what keep me having a sense of humor and never wanting to leave them. Thanks for your attention.

Sincerely, A fellow sufferer of PCOS.

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Response to Why Me?
by: PCOS Editor

Well, the unfortunate Clomid episode is now behind you. You have the rest of your life to look forward to.

First of all, congrats on losing 80 lbs.!! That is fabulous.

PCOS is difficult to manage, but you can very definitely manage it. And you can greatly improve your odds of becoming pregnant.

Maybe you can save your marriage, too.

I know this will be difficult but I think you can make significant further progress if you further improve the quality of your diet, and get regular exercise (whether you feel like it or not).

I would suggest you purchase this e-book and do your best to follow its dietary recommendations. The e-book was written specifically for women like you who have PCOS.

Equally important, find an exercise buddy or some other way to be physically active and get some exercise daily. Not weekly. Daily. Make it a habit. Exercise will improve your self-esteem.

Besides weight loss, you might be able to improve your fertility by getting a vitamin D test from your doctor. If you vitamin D is low, it's harder to become pregnant.

Have a look around the site. There is a lot of information that you can refer to, such as this page on infertility.

Also get a thyroid panel blood test to make sure your thyroid is working properly. Low thyroid function is common in PCOS and makes it really hard to lose weight.

Why Me?
by: Anonymous

when i was 16 i new something was wrong when my stomach was full of dark long hair and my face had dark hair also i never had regular periods the dr kept putting me on different birth controls to help me get my period when i got married at 19 me and my husband wanted to have children

i came off birth control, i would get my period for 3 months then not get one for 2 months we would get excited thinking we were pregnant then a period would come and sometimes stay for 2 months when i was 21 i talked to the dr explained i want to have kids and haven't brrn pregnant he sent me to a endocrinologist

the dr did lots of blood work put me on Clomid for ten days then i would do blood work to see my levels he was checking my insulin levels i informed the dr i just want to be able to have children he put me on a high does of Clomid for 4 months i didn't do my research to no that the meds were steriods i weighed 165 when i started and in four months was weighing 250

i couldn't sleep my hands were numb all the time my legs filled with water lower back pain so bad i couldn't walk 10 steps i went to my family dr he said why are you taking such a high dose of clomid?

i was a mess gained 100 pounds couldn't sleep or walk it was awful. he referred me to a fertility clinic

the first thing the fertility dr told me to do is lose weight and that i have PCOS put me on metforim now by that time i'm 24 very frustrated lost hope, i didn't want to have sex cause of the weight gain, depressed etc...... to say the least

the clinic i was going to closed. i stopped going still haven't gotten pregnant have lost 80 pounds and still have never been the same since on clomid

I'm 27 now and live everyday with pcos and pray every night that one day I will have a child with all the stress me and my husband have separated he wants children and I'm holding him back :(

all i ever wanted to do was give the man i love a child i have never wrote my story online but felt like doing it tonight.

by: Anonymous

this article really helped me you are the best grandma because i know what to say to my doctor
thank you,

I understand how you feel
by: Barbara

I am 50 and was diagnosed in 1966 when I was 9 years old but no one told me or my mother. I had early puberty and was bullied & beaten at school. Teachers even bullied me and called "abnormal." Doctors told my mother that I was 'probably sexually active' or 'putting things in myself' or 'high strung' as the reasons for the intense bleeds I got every 6 -9 months.

At 18, as a favor, the doctor who delivered me saw me as a favor to my mother (who was calling me a 'freak' and blaming me for my symptoms). I was by then suffering from deep suical depressions which since became clinical depression. This doctor told my mother I had Stein-Leventhal and put me on Provera which, for a couple years - helped tremendously.

When I was 19 I was put on birth control and it did help, it seemed but of course it only masked symptoms.

I got pregnant at 19 and at 20 on birth control!! and had 2 abortions. I was no promiscuous. It just seemed the couple times I did have sex I got pregnant.

I married at 28 and went off BCPs and on to infertility treatment. I was with a doctor who was well known but a bit unorthodox - I had a lot of problems with all the drugs. I almost gave up but on my 40th birthday - my last IVF - I conceived and had twins whom I adore.

My marriage ended though. The infertility treatment was too much. My mother blamed me for the PCOS for the rest of my life. My ex-husband started to abuse me verbally & emotionally and it just got worse every year we went childless. We lost friends who thought I was 'contagious' with my childlessness.

I gained 100lbs AFTER the pregnant (and 18 months of SEVERE Post Partum Depression) when I was barely eating. I had another well-known doctor give me a brochure for Weight Watchers. Finally, I met another PCOS sufferer online who referred me to the man who is my endocrinologist & PCOS specialist now. I am still trying to take off the weight but Metformin has helped me tremendously.

I am still medicated for depression, I am divorced and have almost no self-esteem but my children mean the world to me. However, as I tell others with PCOS - I will never stop being infertile and going through those degrading procedures. And I will never feel like a real woman.

People who tell a PCOer if they 'lost weight' they'd be happy are wrong. Thanks for sharing your story!

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