No periods with PCOS?

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#pcos #health #periods #fertility #pregnancy #babies

[dthurley]

I have PCOS, I was not getting good care. I was bleeding heavily (flooding super flow overnight pads every 20 minutes), my doc said I was "ok". I changed doctors, found out I had uterine cancer, had to have a total hysterectomy at age 32. That was a devastating experience that I am still not over 7 years later.

[EFR]

Yes. Thank you for this! I had PCOS back in the 90’s and 00’s. I was lucky to have a period once a year. PCOS wasn’t as understood back then, or maybe it wasn’t in my rural area. Eventually the lack of periods caught up and I was basically on a period every day for a year while I saw 3 OB/GYNs who tried everything in their arsenal to fix it. I was in crippling pain, on more pain meds than I can count and in the ER about once a week. As much as I wanted to some day have kids I couldn’t take it anymore and begged to get a hysterectomy because my quality of life had diminished so much. One Dr flat out refused, another said your husband has to sign papers agreeing not to sue me when he decides he wants to have kids but can’t because I removed your ability and the third said yes no hesitation but we then had to fight with hospitals because of my age (24) and their beliefs. PCOS should be talked about more. Had I known that my PCP was wrong when saying irregular periods are normal both for your age and for having PCOS and endometriosis I would have sought out care sooner and gone to a non rural area if necessary.

[nanicruz]

Before I was diagnosed with pcos, I went 3 years without a period. I'd always had irregular periods before but nothing that extreme. But I kept putting off seeing a doctor because I was super busy trying to graduate college and I had gained weight so I felt like I'd go in for them to just say it was because I was fat and then it'd be a huge waste of time. Turns out I had pcos and the weight gain was actually a symptom of that not the other way around. And my new gyno was incredibly concerned about how long I had gone without a period because of the risks associated with super thick uterine lining. We did an ultrasound and apparently my lining was so I ended up being on high dose hormonal birth control for 5 or 6 years to try and regulate everything. Get checked people! Uterine health is not something you want to mess with.

[bethanybradford]

I went a full year without a period. My OBGYN at the time (loved her) looked right at me and said, “girl, you’re going to get cancer. I recommend a biopsy today.” My biopsy came back: uterine hyperplasia with precancerous cells. I got a new nexplanon rod instead of an IUD. A couple months later I had the WORST period. Lasted 23 days. Guess I made up for the missed year. My repeat biopsy the next year came back normal. Bullet DODGED.

[gigglingchicken]

I am so happy pcos is being talked about as it is much more common than people think. I know about 20 people who suffer from this.
Another medical condition I think needs to be talked about is pituitary tumors. They effect hormones in the body and really can cause major problems but once diagnosed can become manageable. Her doctor who diagnosed her say many people probably have this they just never get diagnosed. Symptoms can range from almost nothing to severe hormonal imbalances that cause a lot of physical and mental health problems. My friend got diagnosed after not having consistent periods for years and being in a lot of pain when she did have one. It was treated with medication to shrink the tumor and regular blood tests to monitor her hormones. In high-school she suffered from severe panic attacks into adulthood and once the tumor shrunk she stopped having them. She also struggled to keep herself at a healthy weight because of it as she could not keep on any weight. Now she is at a healthy weight for her. Her periods are now happening a few times a year and the doctor is hopeful that she will be able to have children with continued treatment in the future if she wants them.

[keetyalexx]

I was diagnosed with PCOS after not having a period for three months. I’d had an irregular cycle before that, which I was tracking, but I’d never just…stopped getting them. Thankfully I had a fantastic pediatric endocrinologist (I was 16) who took me seriously and gave me my diagnosis. Ten years later I’ve never missed a period thanks to hormonal birth control.

[sarahp]

I have PCOS. For about 10 years, I was on hormonal birth control. I’ve been told this is the normal treatment.
When I first went off birth control, I didn’t my have a period for 9 months. My doctor gave me pills to take for 10 days. I believe they were progesterone pills (I might be wrong). From then on, I had a period about every 2 to 3 months. Sometimes, they’d come sooner and surprise me.
I saw an endocrinologist, because I wanted to get pregnant. She had me take a Myo-Inositol and D-Chiro Inositol supplement. My periods then came every 35 days, and I was pregnant in just a few months. It really surprised me that I could just go to CVS to buy a supplement and have a regular cycle. The endocrinologist also said it could help insulin work better, which is good. Many women with PCOS end up diabetic, so anything I can do to prevent that I’m good with.

[tierneyholl]

I am living for these shorts! I love that you show up in my notifications more often🤩

[FaeryPeople]

I think I went almost a year without periods when I was 19. I didn't even notice until about 4 months in, and never brought it up with a doctor because I didn't see it as a problem. I've never wanted children, so I didn't see the point in worrying about a reproductive system I wasn't going to use anyway, and was sure I wasn't pregnant because I had never had sex before.

I eventually did have to go to the doctor for an ear infection and was really confused when I was asked about my last period, as I couldn't see the connection between menstruation and ear infection. The nurse mocked me when I said I wasn't sure when my last period was, and made me feel like I was being really stupid and irresponsible for not keeping track of that. I ended up just lying and saying a few weeks ago so he would leave me alone and just treat my ear infection.

I don't think I have PCOS though. At least, I haven't experienced any other symptoms apart from that one year. I've also had my first checkup at a gynocologist since then and they didn't find anything unusual. Now I have a hormonal iud, so I'm back to no (or almost no) periods

[rowenadowns]

I didn’t have a period for almost a year, and this is exactly what my doctor told me. I had to have a ultrasound done both inside and outside. It’s to make sure I don’t have cancer. Thank you for posting this, we need to make sure women know this. ❤

[slayerceeceegaming]

I had irregular mensies for most of my adult life and doctors here always shrugged it off. Now I'm taking thyroid medication (but have tiny cysts all over both ovaries) and can honestly say this is such an important message. Even if you don't have PCOS you should be checked. I have spent half my adult life struggling. MDJ is so important. I'm now empowered. I *know* what my body is supposed to be doing and even though it's inconvenient have expanded my range for doctors and don't settle for a bad one

[tanianorkunas]

Im glad you posted this as I have been trying to find this out for my daughter

[flyingpastakitty]

It took me years to get diagnosed with PCOS despite showing a good amount of symptoms. I was struggling with my weight and couldn't lose weight easily despite strict diet and exercise.

What did my doctor say? "You are being overdramatic and obviously not trying hard to lose weight."

7 years later I had an ovarian cyst burst and finally got diagnosed properly.

[musicaltheatregeek]

From ages 18-21, I didn't have a period. I was so mad when a doctor put me on drugs to re-start it, because she didn't tell me about the potential problems not having a period could cause. I absolutely love my Mirena, because now I don't get periods, and it's not a problem

[Mayelenm]

It is so good that you make videos about pco's . I was diagnosed onces I ended birth control pill, wanting to get pregnant. Got my period, maybe every 4 months . Big shock as I didn't know what it was . I did know that there must have been something. Went to the doctor after 6 months. True fertility clinic, I now have a beautiful 2 year old boy . Hopefully, your videos help others get diagnosed earlier .

[TheKjoy]

I was diagnosed with PCOS at the age of 15. Over the years my body has done one of 2 things when I'm not on birth control, I either go months without a period or I bleed non-stop for months. 8 years ago my doctor put in an IUD and when it expired, they switched me to the arm implant. I haven't had a period in 8 years, which is kind of nice, but my doctors are well aware of that.
I have a family history of PCOS on my mom's side of the family and of breast and uterine cancers on my dad's side of the family, so I don't take chances with my health. I have already had a rare form of lung cancer that had nothing to do with whether or not I smoked. I have never smoked. I have been cancer free for almost 8 years now.

[LilithCrimson]

How I found out I had PCOS is the fact that I was 16-17 and still had never had my first period, plus the excess body hair and discoloration on the back of the neck and armpit areas. I think they had a hard time seeing either my uterus or ovaries on an ultrasound so weren't able to really tell if there were cysts or not. Went to see an endocrinologist in SF who gave me a pill to induce a period to see if I was able to have one (I could thankfully), and then was on birth control to keep it going because apparently my testosterone levels were much higher than they should be. Haven't been able to go in to get another prescription for them since I moved but thankfully my period has stayed going every month.

[dianaw]

Thank you, MDJ!! I have always had regular periods but when I saw an RE, it turns out I wasn’t ovulating every month. My obgyn put me on progesterone for 10 days every month and I think it has helped but not sure. I had a sky high AMH and recurrent miscarriages but because I was skinny, my old drs wouldn’t investigate further. I only had confirmation when I had a pelvic/lumbar mri and noticed the classic string of pearls in my ovaries. 🥺

[tempelina]

I have PCOS, and I went two and a half years without a period…my Gynecologist has treated me as a medical mystery but this really makes me want to try to seek treatment again.

[Koda_Bear]

So I (now 19)got on birth control at 14 for "behavioral issues" and was not told about any possible complications. Also, at that time, I didn't have regular periods, maybe one every 3-4 months, with extreme pain, but I was told that was normal. As I got older, I would get more regular, and I was being dramatic. I could not be in as much pain as I was in and still be able to walk. I was told that "birth control would regulate my period (it did) and alleviate some of the pain I claimed to have (it did not)." Then at 18 I got off of birth-control because I was trying to cut down on the amount of medication I was taking for mental heath because I was sick of taking medication that did not help I also didn't like the way the medication made me feel and I didn't have my period for 3 months so I went into the Doctor she told me that my period would regulate in about a year and i trusted her so when I didn't have even one period in the next 9 months (during which my Doctor was changed because she moved to the hospital in town) I went to my new Primary Doctor and told her what was happening and that my sister 16 at the time (now 18) was recently diagnosed with PCOS and asked her if that could be what was going on with me and she told me that if i was diagnosed all they could do for me was put me on birth control and it wasn't worth getting a diagnosis so i pushed and she agreed to send me to a gynecologist whom I have not yet seen because her first opening is in may of this year I saw my Primary Doctor in like march of 2022 and I have had 2 periods sense getting off of birth control in April of 2021 so almost 2 years.