I've been battling this God-awful disease (or syndrome as some say) since I was 13 years old, and still have yet to see any type of real lasting relief. In high school not too long after I started my periods I would have them for so long (2-3 months at a time) that I would actually become super anemic and the doctor had to prescribe me iron supplements. At one point in 9th grade after having it for 3 months, super heavy too, I fainted walking down the stairs changing classes and split my ear open and had to get liquid stitches. High school sucked for this reason.
I'm two years graduated now, and am still suffering these awful symptoms. Since I was 14 I have been on and off birth control pills, and for about the past two years I have been on nothing. I guess I just sort of got fed up with taking pills everyday, and for the first year and a half I was having normal periods, regularly and not heavy at all. Then, only recently since January I began missing periods for 3-4 months at a time and my gyno had to give me Progesterone for a week twice just to get it started. I've taken the hint and have since got my first prescription to re start my birth-control regime again *sighs* but I'm feeling trapped in my own body, and without many options.
Although being on the pill seems to help my symptoms, I'm not a big fan of taking it. Knowing already that I'm going to have fertility problems and concerned for my husband and I's future of childbirth (or lack of) I'm afraid to be on the pill for long amounts all the time. I've heard that being on it for long intervals complicates fertility as well. So PCOS on top of birth control issues isn't very appealing! Are their any other alternatives for treatment other than this? I don't want to get pregnant presently, but am worried about the future. I have been to three different gyno's seeking help for this but all seem to sort of give me to attitiude of "there's not much we can do execept to take pills. Quit complaining - and go on a diet, fatty!" (Okaty, maybe they didn't say that exactly but that's the impression I got.) But it's horrible! I feel so alone.
Frequently, especially in these last few months that remind me all too much of my high school years, I've been missing periods and then getting them so terrible that I can't even get out of bed! The bleeding is so heavy...I'm going through - honest to God - four pads a night just to keep my sheets clean and even then, my pj's and underwear are toast half the time. (TMI I know, but I'm going nuts here!) The cramps/pelvic pain is awful, and sometimes it makes me feel like I just want to vomit. I get lower back pains that are so sharp and painful that I cringe and feel like I can't walk. And that's not the worst part...Aside from the excessive bleeding, I've got these huge clots that just keep coming! It's scary, it's painful, and it's embarassing.
My poor husband doesn't know what to tell me or how to help, and I feel like I'm beating my head against a wall here! If I had a penny even, for every time I've said "You just don't understand..." I'd probably be able to give Bill Gates a run for his money by now! It's so frustrating! And the worst part of it is, I missed work today because the bleeding is so terrible that I can't go one hour without changing my pads and tampons don't even hold up for a half an hour...I swear to God, I feel like I'm bleeding to death! A
And it's affecting my job again like it did my schoolwork!
I'm really not sure of what to, or if I'm more frustrated or scared. My period was four months in coming, but is it normal for it to be this heavy? I feel like there's a monster in my pants or something...Thank God there aren't any vampires around right now! *nervous laugh* Ha! See that? All that blood loss is getting to my head. I'm losing it.
*sighs* In all seriousness though, I'm really not sure of what to do. It's only been about 3 days going this consistency but it's not slowing down at any. I'm worried I'll become anemic like usual, and I'm not fond of the fainting spells.
I know you guys aren't doctors, but I would love a little understanding here and I think I've finally found the right place. In fact, just last night I was about in tears and told my husband for the 26th thousandth time; "you just don't understand! I wish I had someone who understands what I'm going through. I have no one to talk to." And he suggested looking up one of those 'yahoo groups' about it or something. And then I found you guys, which is even better.
In conclusion (goodness, can I ever ramble!) I'm so tired of tossing underwear and jeans into the washer an hour or two after putting them on, getting up four time in the night to avoid a flood, and feeling like my insides are twisting and burning inside...If not medical advice, I just need some understanding. Any help?
I have had some of these same EXACT problems & I can't count the number of doctors that have told me the same thing, "go take the pill & it'll get better." I couldn't wish the symptoms I have on ANYONE else but I know how you feel. I was diagnosed with PCOS 3 years ago after suffering from it for about 4 years. I have tried literally every thing I've heard or been recommended to try like heating pad over the area, warm compresses, hot baths & nothing works. I've gone tot he DR. several times a week because of the chronic pelvic pain & even had to call her at home for this. There are days where I can't focus on anything but the pain I'm having and the worst part is when I hear " Ashley, I think its all in your head, the Drs. said it shouldnt cause pain" WELL HELLO!!!! I am having serious pain, something to the point of tears and just today I was telling my mother who has never believed the pain i've been in from this that I was literally crying. It usually feels like someone is trying to rip my ovaries out. I've gotten my period once in a 8th month period and every single doctor I go to doesn't seem to want to give me the time of day. I feel like its no concern to them because they do their job, go home & be happy / whatever while I go home and can barely concintrate on anything but the pain I'm feeling and how bad I wish someone else knew exactly how I felt so many the people who don't believe me could actually get an understanding that this can cause chronic pain. Its effected my life so horribly. I had to even take a medical leave from nursing school because of my PCOS. This is a REAL issue and I think us women need to express ourselves more and get our issues known around the world. How many other women are suffering from PCOS who don't have the information or support from people that this site gives? It is very helpful in deed to know that I am not the only one who is going through this.
I think there are MANY MANY women suffering from this from all over. I've written several day time talk shows [tyra, dr phil, opera] trying to get this issue out there to the pulic and other women who may be going through the same thing.
On top of all the pain (which is bad enough) one of the worst parts of having this disease is just that; doctors - or lack of.
I don't know if it's just something they really do think is in our heads or not, but I tell you what...it's frustrating!
This is the fourth day of bleeding like I have been, again after a four month absence of having any period, and it's not even starting to slow down. In fact, the pain is getting worse and the fatigue is just grueling! In fact, I'm here staying with my sister and brother while my parents are away with my husband here too, and I just went to the bathroom with her in there (she was doing her hair) and after I got up she must of glanced over at the toilet because she says; "OMG - Eww...What are you like, dying or something? That's disgusting!"
*sighs* And it is disgusting, and it does feel like I'm dying but as embarrassing as it is, I'm afraid to even go to the doctor! I mean, what's the point?! All they tell me is either that A. It's in my head or B. I just need to take pain pills, BC pills, hormones, ect...and nothing ever gets done!
I'm really not sure what to do, but one things for sure...if I do pass out or something (like I have before) it's kind of a given that I'm going to have to the doctors. But it really is affecting my life, and it always has.
IN CONCLUSION (rambling again) I think you're right. Something needs to be done to get the word out, because this is terribly ridiculous! Women are suffering and getting pushed aside because doctors just don't know how to handle it or just plain don't think that it's real.
Something needs to be done though, and soon!
Because frankly, I just don't know how much longer I can take this.
-Elisabeth
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i dont get it :S ive just been diagnosed with pcos, before that my doctor thought i had endometriosis, as well as awhole bunch of other things.... i get realllyyy bad pelvic cramps that come and go almost everyday, but after all the tests that were done i was diagnosed with just pcos. My doc says the pelvic pain is from pcos, im on the pill and the pain still hasnt gone away. is there anything else i could take to get rid of it?
To livinglove9, areice, and meg6, first, I want you all to know that there is someone out here who feels your pain. I can first recall missing periods at the age of 12 (i started at 10) but really knew something was wrong when I was 14. I'm 31 now and I've had the pain, the long stretches without periods and then most recently, a heavy period that lasted 9 months with less than 10 days total throughout that I did not bleed.
First, if you aren't planning to conceive at this time, I'm all for the birth control. I went through the starting and stopping of birth control and strongly believe this made my symptoms worse. Do not continue to take progesterone to start your periods, even if you choose not to go on BC. It will create more issues in the end. They will help keep the flow much lighter. I also noticed that when I am bleeding heavily, it's best to sleep on my sides and not on my back or stomach at all. Yes, I've woken up in pools of blood before but not since I started sleeping on my sides during my period. Usually a pillow tucked in my back helps keep me there.
For the pain, I usually keep a prescription of Naproxen (Aleve) and start taking them immediately at the first sign of pain or 2-3 days before your cycle if you know when it is coming on. Do not skip doses even if you feel fine. It helps me a lot and there have been plenty of days when I've been found writhing on the floor in pain and unable to walk. Do not double up on OTC pain meds because this can cause stomach issues and other side affects.
My cycles affected my work also and I lost 2 jobs as a result. Have your doctor type up a letter advising your employer that you are under the care of a physician for a condition that will cause you to miss work, be tardy, leave early, or cause you to go to the restroom frequently and that you are on medications that may cause side affects. Keep the letter updated regularly (you'll have to ask your employer how often you will need to turn in a new letter) and whenever there is a change in your condition or medication. You do NOT have to disclose your medical condition or symptoms to your employer. If you do this properly, you can NOT be legally fired for missing work as a result of your condition.
Also, your husbands or boyfriends may not be able to fully understand what you are going through but there is a section here for our loved ones so they can get information on what we are going through and support for themselves. If you can become a b**** (sorry for using that term) like I can during the rough periods, they'll need the support to ensure they aren't crazy!
I have the exact same symptoms and after 2 years of trying to get pregnant and just dealing with the crazy 4-6 week long periods and heavy clotting and bleeding, I finally couldn't take it any more. I went to my OB/GYN and asked for help. He told me that I was anemic and that I needed to start birth control pills to "regulate my cycle." HA! He also put me on iron supplements which gave me horrible heartburn and constipation. The pills that he put me on have given me migraines at least 3 times per week.
The first month I was on these pills, my heavy bleeding stopped almost immediately. I had some spotting throughout the month, but my dr assured me that was normal. I had a normal period on schedule when taking the placebo week of pills.
When I began the new pack, the bleeding did not stop. It got worse about 1 week after taking the new pack. I was having giant baseball sized clotting every 30 min to 1 hour. I called my dr and he said to keep taking the pills. After 2 days more, I was starting to fear for my life. I was very pale and dizzy, going through a pad and super plus tampon about every 30 min. I asked my husband to take me to the car and drive me to my dr office. I changed my feminine supplies twice while sitting in the lobby. He finally saw me and was shocked at the amount of bleeding that I had. He told me to take 3 pills a day, get my blood drawn for testing and take even more iron pills. He said that if the bleeding did not stop within 48 hrs, to go to the ER.
I was miserable. I thought I had migraines before??? Jeez-louise! I have never had such headaches. The bleeding stopped within about 24 hrs. I was awakened the following night with the worst abdominal pain I have ever felt in my entire life. I have a pretty high pain threshhold and I was writhing and screaming. I told my husband that I had to go to the ER. Please note, I have never been to the hospital for any reason. (Other than when I was born.) My blood was taken and I had a hemoglobin level of 7.1. I had a blood transfusion, CT scan, Xrays, and ultrasound. They did a biopsy of my uterine lining. Everything was clear and the biopsy was negative for everything except a hormone imbalance. Big surprise there.
I stayed in the hospital overnight and the dr came in the following morning and said that I may have to have a hysterectomy due to the crazy bleeding. If I chose not to, I would probably have to be on some form of birth control medication for the rest of my life. I deparately want a baby and this devestated me.
Is there anyone else who has had a similar story? Are children hopeless for me? Of course I am going to seek a second opinion, but I am very scared. Any insight you could give me would help immensely. Thank you!
I have always had irregular periods, but the last year and a half they had settled into a normal pattern. Then in june I started bleeding and it lasted like 28 days. I went to the ER because of the large clots. They did nothing at all. As soon as I mentioned having PCOS they said it was normal and told me see my DR. The bleeding stopped like a week later.
Then I had spotting until Sept 8. I thought I was getting a normal period. it is still going on. It was stopping for a few hours here and there, but now it's nonstop. I keep passing huge clots (baseball size). I will go from little to no bleeding to flooding with huge clots. I never know when it is going to happen. They just come pouring out.
I don't know what to do. I don't have insurance. My dr wants to put me on provera of course. I am thinking about going to another ER if it keeps up. I can't take much more.
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I was diagnosed with PCOS about ten years ago. And, truthfully, I've been the worst with my birth control and glucophage over the years. Because of either money, insurance or both, I sometimes skip months of birth control. Anywho, I have these pains in my lower abdomen when I sit or get up. It's like someone is choking something in there (i'm not sure if it's my ovaries, I feel it more on the left side though). When I'm sitting or standing, it's more of a throbbing. I haven't taken my bc in about 3 months. So I'm wondering would the pain simply be because I haven't. And either way, do I REALLY need to see a physician. (my insurance at my new job hasn't kicked in and I'd like to wait til then if I can)
Sos!!! 
(sorry for using that term) like I can during the rough periods, they'll need the support to ensure they aren't crazy!
