Getting A Diagnoses-It Is Only the Beginning
I had never heard of polycystic ovary syndrome (PCOS) until I was referred to a gynecologist by my family doctor. I was 37 and had been suffering since I was a teenager with acne, weight gain, and severe menstrual cramps with prolonged bleeding. Within minutes of the physical examination, the doctor flung the words at me like guests throwing rice at a newly married couple: 'You have polycystic ovary syndrome and we need to do a D&C to see if you have uterine cancer.'
All I heard was cancer, but he continued. He told me that PCOS was the reason for me being overweight, having pre-menstrual syndrome (PMS) and suffering from acne so severe that it impeded my social life as a teen. Not to mention bleeding excessively for seven days or more each month. Wow, so this is why I have been tortured for three weeks out of every month since I was 10. I walked out of the office not sure what I had or how I was going to be treated.
I went home and started to research the syndrome. According to womenshealth.gov, among one in ten and one in 20 women of childbearing age has PCOS. As many as five million women in the United States may be affected. It can occur in girls as young as 11 years old. Well, I'm pretty sure mine started at 10.
So what is this mysterious syndrome that makes the teen years a living nightmare and adulthood the continuation sequel? Polycystic ovary syndrome (PCOS) is the most common hormonal disorders among women of reproductive age. The name of the condition comes from the appearance of the ovaries in most, but not all, women with the disorder — enlarged and containing numerous small cysts located along the outer edge of each ovary (polycystic appearance).
And the unrelenting symptoms that torture you till you wish your uterus and ovaries were removable accessories? Infrequent or prolonged menstrual periods, excess hair growth, acne and obesity can all occur in women with polycystic ovary syndrome. Menstrual abnormality may signal the condition in adolescence, or PCOS may become apparent later following weight gain or difficulty becoming pregnant.
In addition, the body may have a problem using insulin, called insulin resistance. When the body doesn't use insulin well, blood sugar levels go up. Over time, this increases your chance of getting diabetes. The news just kept getting better with every search return.
It seems that years of strict dieting and excessive exercise, plus taking oral contraceptives during my youth suppressed many of the symptoms of PCOS. To my dismay, the acne as well as the excess hair growth had not remained suppressed.
In my late twenties, I had been married for a few years and was feeling comfortable in my own skin, so I decided to just relax. I stopped the crazy dieting that was by now taking a toll on my body. I had also made the decision to stop taking birth control pills due to the side effects I was experiencing, most prominent being vertigo. All these decisions led to the explosion of my PCOS.
I started gaining weight rapidly. When I say rapidly, I mean at the speed of light. I had always battled my weight but this was something different. I would gain a pound a day from eating no more than 500 calories. I started suffering from a lack of concentration and brain fog. I knew my body and something was not right. My doctor diagnosed me with hypothyroid disease and put me on Synthroid. In the end, I had gained an incredulous amount of weight that totally disfigured me from the person I once was. I was miserable.
For the next ten years my doctor told me I needed to lose weight and kept increasing my Synthroid. I tried to lose weight but my energy was so low, my stress from life so high, it just did not happen. I continued into my thirties with severe acne, horrendous PMS, and no real answer for what was actually going on in my body. I never got a real answer until the gynecologist gave me the not so magical diagnoses of PCOS.
A D&C-What They Didn't Tell Me
So what happened after the initial diagnoses? The D&C is what happened next. I walked into the procedure room with no expectations of what would occur. In front of me was a very odd looking table half the normal size with stirrups far more apart than any I had seen before. I fully admit at that point I was scared out of my mind. Not entirely from the thought of the procedure but that I was going to have to fit my overweight self on that table and then spread my legs further than I had since I was a cheerleader in high school. I needed something to calm my nerves; the female anesthesiologist understood and accommodated me accordingly. Looking back I wish the procedure would have been explained to me first. I know doctors are in a hurry these days but it would be nice to be a bit more prepared before an operation. I guess many physicians leave it to the patient to do the research but I am old fashion in wanting a face to face beforehand.
For those, like me at the time, not familiar with what a D&C is, here is a ghoulish explanation. A D&C (dilatation and curettage) is the opening of the cervix and surgical removal of part of the lining of the uterus by scraping and scooping. D&Cs are commonly performed for the diagnosis of gynecological conditions leading to 'abnormal uterine bleeding; to resolve abnormal uterine bleeding (too much, too often or too heavy a menstrual flow); to remove the excess uterine lining in women who have conditions such as polycystic ovary syndrome (which cause a prolonged buildup of tissue with no natural period to remove it). Yes ladies, the scraping and scooping actually occurred to my horror.
As I was coming out of the drug induced coma, I heard the anesthesiologist tell a nurse that the doctor had a very difficult time due to the condition of the patient. I really could not process this at the time because all the scraping and scooping that occurred was starting to make me have a very bad day. The nurse and anesthesiologist preceded to make me get off the table and walk back to the examination room. The journey was the longest five feet of my life. The pain was significant and I begged for narcotics.
When the doctor came into my room he looked as if he had climbed Everest. He told me the procedure lasted twice as long as it should have due to the amount of scar tissue I had in my uterus. He said that he, in his long career, had never seen a uterus in that bad of condition without having cancer and we would know for certain in a few days when the biopsy results returned.
A few days passed and I received a phone call from the doctor informing me that I did not have the cancer but due to the condition of my uterus he recommended a total hysterectomy. I fully agreed and had the procedure a month later.
For a person like me who suffered over 20 years from marriage breaking PMS, horrendous cramps and excessive bleeding, a hysterectomy was a true gift. My husband and I did not want our own children and I felt it was time for a positive change.
The operation was a rousing success! I experienced hardly any bleeding or pain and had a paid six week vacation from work. Life was good. My experience will not be like everyone’s but it was a life and marriage saver for me.
Living daily with PCOS
Since the hysterectomy, I have been placed on hormone replacements (HRT) that help with the mood swings and hot flashes. A hysterectomy does not cure PCOS but it does help with the wild ride from hormones produced by damaged ovaries along with removing all possibilities of ovarian and uterine cancers.
There is no cure, only methods to manage it. A diet focusing on protein and low glycemic foods with the addition of good fats such as olive or walnut oil goes a long way in fighting insulin resistance. Exercise is also key in reducing the symptoms of PCOS, although I admit I am not the best practitioner of this.
I have recently been placed on Metformin and have lost to date 40 pounds over four months. Quite a number of studies indicate Metformin reduces insulin, testosterone and glucose levels -- which reduces acne, hirsutism, abdominal obesity, amenorrhea and other symptoms. My experience has been mostly positive. The weight started coming off immediately but the side effects were not pleasant until my body adjusted to the medicine.
If you are suffering from PCOS, my best advice is to educate yourself. The internet opened up my world to many different paths I have used to begin the healing process from the devastating symptoms of this disorder. Here are a few great links you can explore:
Resources for PCOS
About the Author
Catherine Dean is a freelance writer, gardener, quilter, and blogger. Her professional background includes nonprofit program development, grant writing, and volunteer management. She holds a Bachelor of Science in Mass Communications from Georgia College & State University.
Her blog, Sowing A Simple Harvest, chronicles a modern couple trying to live a simplistic, sustainable life. To explore her professional credentials, visit her website. She can also be followed on Google+.
Ingrid on May 10, 2015:
Hello I am so happy to have read your article. I am one week post op and also with pcos since my teens. Still recovering but I feel like a light at the end of the tunnel. Your article has given me comfort t knowing I am not alone in this struggle. Thank you ...
Catherine Dean (author) from Milledgeville, Georgia on March 30, 2015:
Oh my dear Elisabeth, I am so very sorry for all of your suffering. I cannot imagine what you go through with bleeding so long and heavy. My longest period was only two weeks. Have you gotten a second opinion from a fertility specialist since you want children? I would suggest that first before choosing a hysterectomy. You also need to have your anemia addressed as that makes you feel horrible and exhausted and cannot make clear decisions. I can only tell you my story and that I have had positive results from my hysterectomy except for menopause issues that I now in my 40s seem to be having on a more intense level. I quit taking hormone replacement about a year ago (at 44) just because of the dangers. But, that is because I'm in my 40s not my 20s or 30s. Only you and your husband can make the right decision for you both but you must put your health first-you must remember that. Please let me know your outcome and know that you can vent to me any time. My email is firstname.lastname@example.org.
Elisabeth on March 17, 2015:
I found this wonderfully written and informative article while searching through Google for some help after coming home from a terrifying doctor's appointment.
First of all, I wouls like to thank you for a positive story. I am glad yours was a successful one and it gives me hope!
I have been battling the symptoms of PCOS since I was 11 years old, (I am now 26) and every four months or so lately I bleed for 2+ months at a time. This time currently has been the longest for me ever, nearing 3 months of non stop bleeding and no end in sight! I am incredibly anemic and my life suffers from lack od energy, as well as limitations due to the fact that I cannot stray far from home as I bleed through things all the time. I am also experiencing involentary uterine contractions (which my doctor diagnosed today) because my uterus is so irritates by all the bleeding and passing of clots that it is working overtime!
(Sorry for the TMI but that's just my life with PCOS and I suppose I have grown used to it.)
My doctor informed me today that due to my excessive and non stop bleeding that will not and does not respond to BC pills anymore that my best interest would be a hysterectomy. I am devestated and afraid, but also not beyond the idea.
But my biggest fears are rather selfish; will my sex life be ruined and I become "desensitized" as so many women online claim after having the procedure done? Also, I have back issues and want children but have slowly begun to accept the idea that motherhood will likely never happen for me. My husband says he will be with me no matter what and loves me regardless, but he also nearly weeps sometimes when he plays with his neice and nephews due to the heartbreak of never having children of his own. Who is to say that should I completely omit my chances with a hysterectomy, rather than play with a microscopic chance of conceiving currently dealing with PCOS and countless miscarriages, that he will not leave me someday down the road when he realizes that he made a mistake by staying with me and does indeed want children?
(Sorry if I seem like I am senselessly venting, but I am so lost currently.)
Anyway, I am just afraid. And your story gave me some hope. You say you were unaffected sexually and that after taking hormones you felt better. So many people I have read online say the opposite. They also scare me with their claims that taking hormones increases ones risk of breast cancer, which readily runs rampant in my family. Have you ever heard or been told such claims by any doctors?
Anyway, I am sorry for the long post and the downpour of fear and emotions but I am scared I guess. I have no mother or grandmother to speak to, nor friends who would understand so I guess I just sometimes look for help in strangers.
Thank you again for writing the article. It has calmed me down amidst all the other seemingly propogated negativity concerning the procedure of a hysterectomy.
Catherine Dean (author) from Milledgeville, Georgia on February 05, 2015:
Jacy, I believe I emailed you with my experience and I always tell women to ask as many questions of their doctors that they need to so they feel confident about their choices.
Catherine Dean (author) from Milledgeville, Georgia on December 04, 2014:
Jacy, I'm so sorry that I've not responded until now-life has been insane. What did you choose to do? I am not a doctor and can only give you my experience. Having a hysterectomy, in my experience, does in no way affect the enjoyment of sex. I've never read anywhere that removing ovaries makes for a higher risk for diabetes. Let me know what happened!!
Jacy Salzbrun from Kimmell, Indiana on September 25, 2014:
Thank you for replying! My biopsy result was negative!!! So Happy! Still struggling with what is the right decision ! I go Monday back to the doctor to discuss hysterectomy and the ablation! I going to wright down some questions to take with me! Some questions I have : is replacement hormones safe?? Removing my ovaries with PCOS will that push me into being diabetic?? Will I still enjoy sex?? With having PCOS am I at a higher risk of getting uterine cancer? Ovarian cancer? Or cervical cancer?? Any questions I have do you have any answers??
Jacy Salzbrun from Kimmell, Indiana on September 25, 2014:
Thank you so much for your reply! I got good news everything was fine with the biopsy!!! Yaaaa! I go back to my doctor Monday and talk to him about a hysterectomy or ablation??? I'm still really struggling with what is the right decision!! I'm going to wright down a bunch of questions to ask him! Some questions I have is: Is replacement hormone safe?? Will I become diabetic from removing my ovaries from PCOS?? Will I still enjoy sex??
Catherine Dean (author) from Milledgeville, Georgia on September 18, 2014:
Jacy, first I want to say that I pray that you get a negative result on the biopsy. That will be good news to rejoice in. I fully agree with you about doing multiple procedures-not something I would choose either. All I can tell you is that a total hysterectomy was the best choice for me. I've never, ever regretted having it for one moment. I still take hormone replacement and have symptoms of menopause even with the replacement but it does not compare to the misery I suffered for 37 years. As I say in the article, if I had known I would have had it ten years earlier. To remove all possibilities of cancer is one of great relief. I pray that you will be enlightened to make the right choice for yourself. Please feel free to email me at email@example.com.
Jacy Salzbrun from Kimmell, Indiana on September 15, 2014:
I have been suffering with PCOS since I was a teenager. I was able to get pregnant 9 years ago and have my beautiful daughter. My problem is now I'm almost 39 and miserable with very heavy periods and large clots. I went to see my OBGYN today and he recommend a uterine biopsy which he did today. Then suggest once biopsy is back either an ablation and tubal, or a complete hysterectomy! I'm struggling with these options! What to do??? I don't want to go through the ablation and tubal and in 5 years down the road need a hysterectomy! Scared at 39 to have a complete hysterectomy also!! Any words of wisdom will be appreciated!!!!
Catherine Dean (author) from Milledgeville, Georgia on June 22, 2014:
Carisa, you sound just like me at your age. You will feel so much better I am sure of it. Your life will improve because your health and mental welfare will improve. Good luck and let me know how you are doing. Thanks for taking the time to comment.
Carisa on June 09, 2014:
I am so glad I found this! It gives me hope. I was diagnosed with PCOS at 23 then endometriosis. I have never been able to have children as the endometriosis had completely taken over my ovaries and tubes. In April we discovered i had large cysts on ovaries and endometrial hyperplasia which was biopsied and not cancer but would turn into it. I am 36(soon to be 37) and I just had a total hysterectomy with bso. I was put on Metformin and Estradiol. I am hoping this helps me with the weight and hair growth and that I will generally feel better. You made me optimistic. I am 3.5 weeks post op and my husband thinks he sees a change in my body already ( even with the swelly belly). I hope so! I am ready to feel good again and have energy. Thanks for posting your journey:-)
Catherine Dean (author) from Milledgeville, Georgia on April 03, 2014:
Have you seen a gynecologist or an endocrinologist? There is something wrong if you have been bleeding for 4 1/2 months straight. You must see a doctor now. Metformin made me sick as well for the first few months but has helped me tremendously and I have lost weight. The bleeding is more than likely draining your energy. You have to see a doctor and right now dear!!!
Catherine Dean (author) from Milledgeville, Georgia on April 03, 2014:
You have to go see a doctor...NOW!!! Find a gynecologist quickly and one that can see you immediately. Please do this and let me know how you are doing!!! Send me an email firstname.lastname@example.org.
Makayla on March 27, 2014:
Reading this made me cry and smile - in happy and sad ways. I am at my wits' end. I'm 19 yrs old with PCOS, I NEVER want kids EVER (in fact I have a phobia of pregnancy) and I probably can't have them anyway, I've been bleeding 4 1/2 months straight, I'm in constant terrible pain, I'm almost 300 lbs but can't find the morale to lose weight, but of course no doctor would perform a hysterectomy on a 19 yr old. I have cried my self to sleep night after night and I don't know what to do. I want a hysterectomy so bad. Birth control pills make my BP go up and gain weight, and Metformin makes me sick... Help!
Jorika on March 23, 2014:
I have been suffering for year misdiagnosed by doctors but last year I was finally diagnosed correctly. I'm 28 without kids and is in fear of never being a mom. I'm a great godmother but I AM now bleeding for almost 90 dayI know I NEED to see a doctor. I am just procrastinating for no damn reaso
Catherine Dean (author) from Milledgeville, Georgia on March 19, 2014:
So sorry it has taken me so late to respond. You really need to find a doctor that can get down to what your pain is and where it is coming from. I don't know where you live but surely there is a doctor that is more personable than the one you went to. Not being a medical professional I cannot give you any medical advice except that you need to find a doctor that can tell you exactly what is wrong and then acts upon the needed procedures. Good luck!
momoftwinsn2 on January 31, 2014:
.new here but I had questions. I have been having some issues as of late and got concerned. I am in constant pain and I finally got in to see an obgyn which here is nearly impossible apparently and he wanted to run more tests which happened to be the same ones the hospital and my reg doc had just done. Ok so after several ultrasounds we find that I have cysts on my right ovary. He says wait 6 weeks we will do another it should be gone. Well it's still there. We order labs and find I have polycystic something. He called me and told me this but I couldn't understand half of what was said except something about excessive testosterone and it possibly causing brain cancer. Which makes no sense. I haven't had a period since Sept of last year. I'm ok with that. I want a hysterectomy but he's not sure. I'm 32 finally have my 4 children and have had my tubes tied so having more kids is out. My question is would a hysterectomy get rid of the pain I am constantly in. Also would it be a good remedy for pcos. Any ideas would be greatly appreciated. Thanks.
Catherine Dean (author) from Milledgeville, Georgia on April 22, 2013:
Thank you for commenting and yes, it is a struggle each day. I am still on Metformin but it takes so much more to battle PCOS than a pill. We are all in this together.
Catherine Taylor from Canada on April 19, 2013:
mv, excellent hub. I too suffer from PCOS and it has been an insane ride. I just take it a day at a time like you seem to and focus on health. The side effects of metformin were too much for me and now I try to handle my PCOS through supplements, diet and exercise. Obviously it's a work in progress. Thanks so much for sharing your experience. Nice to know I'm not alone.
Sujina on February 08, 2013:
It's so nice of you..thank you :)
Catherine Dean (author) from Milledgeville, Georgia on February 08, 2013:
Thanks for voting and commenting Sujina. I wish you all the best with your PCOS. There is so much great info on the web for us. Know that I am here for you if you would like to talk about PCOS.
Catherine Dean (author) from Milledgeville, Georgia on February 08, 2013:
Thank you Indian Chef. It was my hope to help others when I wrote this. I have received several emails from women who found this article on the web and it has helped them. Thanks for commenting.
Sujina on January 31, 2013:
Thanks for this informative hub..I also have PCOS in its initial stage :( ,no weight gain problem,acne etc as you mentionaed. But having irregular menstrual cycles. I'll look into your additional link later. Voting up ..
Indian Chef from New Delhi India on January 31, 2013:
It is not easy to digest the fact that you have a cancer. Not even a very strong hearted guy can not but be shaken on this news. You came out with such a wonderful information on PCOS. This might help the other females suffering from this disease.
Catherine Dean (author) from Milledgeville, Georgia on September 18, 2012:
Thanks so very much Justsilvie!
Justsilvie on September 18, 2012:
Well done and informative and thank you for sharing your personal PCOS story. Voted up and shared
Catherine Dean (author) from Milledgeville, Georgia on July 27, 2012:
Anna, so sorry it has taken me so long to respond. I hope everything turned out well for you. Let me, please.
anna on June 20, 2012:
Very well said. I am scheduled to have a d&c on monday. You're right. We need to educate ourselves. The idea of having this procedure is killing me. I dont want to have cancer, I dont think im ready for that.
Catherine Dean (author) from Milledgeville, Georgia on September 19, 2011:
Thank you Mr. Jay. You are such a wonderful, helpful person.
Reynold Jay from Saginaw, Michigan on September 18, 2011:
My wife had a hysterectomy when she was a teen and now is 67 years old. If you ever have any questions about any of it, I can have her write you. She also has the dialations several times a year.
Catherine Dean (author) from Milledgeville, Georgia on August 31, 2011:
Thank you Bitterbug for commenting. Yes, we women have a lot to deal with when it comes to health issues. The best thing we can do is to educate ourselves and those that love us, so that we may handle our issues together.
BITTERBUG on August 31, 2011:
Thank God I'm a guy!!
Catherine Dean (author) from Milledgeville, Georgia on August 30, 2011:
Thank you Lea for leaving a comment! I hope this helps women who share this condition with me and those that love them.
Lea Valencia Noring on August 30, 2011:
This is very informative and well written.
Catherine Dean (author) from Milledgeville, Georgia on August 29, 2011:
Thank you for commenting Robin! Mental scars can outlast physical ones by years. Medical procedures can be some of the most scary moments of our lives and they stay with us forever. I wish doctors were more sensitve to their patients' experience but I have found that it is up to us to prepare ourselves.
Robin on August 29, 2011:
I still almost throw up when I have to go in and they even mention a possible biopsy or even just a regular check up is horrid. I didn't have a D&C but they did some scrapes and I still am scarred mentally from the pain and anguish.