Ovarian cysts/PCOS? Any experience?

Parentberries
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Sorry for the (lengthy) rant, I just need to get this out.

I’ve always had irregular periods, they used to be much worse. They have sort of settled down now that I’m a little older and I can usually figure out (within a certain time window) when I will get my period. Most of the time.

Right now, I’m on day 59 of my cycle (first day of last period was Feb. 2nd) with none of the telltale signs that AF is coming. Usually I get really moody a couple of days before, spot the day before, then AF. Nothin’. I’ve had some weird symptoms, so I took a hpt on [name]Tuesday[/name] just to rule that out, and it was negative on day 53. Since I don’t know exactly when my period should have come I don’t know how late I was at that point, but I’m going to assume it would have been late enough to show up, since the last time I “did the deed” with anyone was almost 4 weeks before that. Everybody has that one friend who didn’t get a bfp until they were X months/weeks pregnant or whatever, but I’m assuming that’s crazy rare and I would have gotten a bfp by now if I was.

But I’m still having these weird symptoms, and I don’t know if they’re because of a cyst or what. I have had cysts on my ovaries in the past, but they never caused any symptoms other than a missed period and online sources listing “symptoms” tend to contradict each other. I had one GYN suggest that I might possibly have PCOS, but she wasn’t able to confirm it because my insurance ran out and I am not a “textbook” case (I’m very slender, don’t have acne/skin problems, no insulin resistance, no excess androgens, et c). So I’m just wondering if anyone else has experienced symptoms like this with a cyst that might ease my mind.

The biggest thing is, I feel bloated all the time. Like I said, I’m slender (5’8" and roughly 105 lbs., no eating disorders - I come from a family of tall, thin people, my cousin is the worst at 6’5" and 125 lbs.) so my stomach is usually pretty much flat all the time. I definitely noticed that my jeans are tighter and from the side I look a little “fuller” right around/under my bellybutton but haven’t gained weight. I just feel heavier, like all my weight is pulled toward the middle front of my body. There’s no pain with the bloating though. I’ve felt something like cramps once or twice, but only for maybe a few minutes and it was days between.

Also, I’m exhausted. I slept 12 hours from [name]Saturday[/name] night to [name]Easter[/name] morning and still felt like I needed a nap by mid-afternoon. I’ve been a little irritable but not too much, I think. A couple weeks ago, from [name]Saturday[/name] to [name]Wednesday[/name] i had mild nausea but never threw up or anything, just a queasy feeling and (TMI) a little diarrhea but I passed it off as a stomach bug. [name]Every[/name] now and then since then I still feel queasy, but it usually goes away after a couple of hours. And the two weird, random things I can’t explain. [name]One[/name], I can suddenly burp. I kid you not, from the time I was a kid I have not been able to burp, now all of the sudden I burp like 10 times a day. No change in diet, increase in soda or whatever, I haven’t changed a thing. And two (also slightly TMI?), my nipples are crazy sensitive for no reason. Not in a painful way, but its definitely noticeable if I like, bump them accidentally. Maybe AF-related, not a cyst thing? But I’ve never really noticed anything like that before.

Anyone ever experience anything similar? Really I just need to know I’m not crazy… so even if your symptoms were different than mine please vent with me! Solidarity :slight_smile: thanks

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If you are genuinely 5’8" and 105lbs, you are medically dangerously underweight. Your BMI is 16.0, which is lower than that of most fashion models and elite female athletes. Since your percent body fat is likely quite low, you don’t have enough endogenous estrogen to support a regular monthly cycle. You are also likely to be infertile, so pregnancy is probably not the cause of your symptoms.

An exceptionally small fraction of the population-- perhaps, even, none, including Somalis, [name]Masai[/name], Wolofs and other genetically tall, thin people groups-- will have a natural, healthy BMI of 16.0 If you have a cousin who really is 6’5" and 125lbs, her BMI is 14.8. That is below starvation-level and many people in famines or prisoner camps literally starve to death before reaching that level.

It sounds like health insurance is a problem which is a great shame (damn the US health care system). Explore alternatives if you possibly can, including free clinics, teaching clinics, Medicaid (you have to be really poor to qualify, unfortunately) or even buying COBRA out of pocket. In the mean time reflect very honestly and very critically on your eating habits and if you really do think you’re free of eating disordered pathology work very hard on gaining weight. 125lbs would be a slender, healthy weight for someone of thin build who is 5’8" in height. A lot of this endocrine suppression completely reverses itself with modest weight gain.

Not cycling regularly is actually an important problem. Not doing so is very much linked to poor cardiovascular health, osteoporosis, and uterine cancers (your uterine lining needs to shed near-monthly otherwise the risk of endometrial cancer is very much increased).

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[name]Hi[/name] there. I just wanted to say that I don’t have any experience with PCOS but I do sometimes get very lengthy cycles. My last one was 37 days. During the tail end of I was driving myself insane thinking that every little twinge or symptom was either pregnancy or some medical problem. I was crazy bloated and gassy too. I was convinced I was pregnant, but eventually AF arrived. I analyzed everything and I mean everything! That being said, everything you describe sounds a lot like preggo symptoms to me. I have never been pregnant but it all sounds like everything I have read about early pregnancy stuff. Maybe go to the doctor to ease your mind?

[name]Edit[/name]- I agree with blade. If insurance is a problem, go to a clinic. In our area we have a few very kind practioners that have a pay what you can system based on your income. Maybe they have something like that near you.

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Not to be a downer, but I did experience something similar (AF more than a month late, body doing all kinds of weird things, though, no gas issues that I can recall but it was years ago) I went to my doctor and it turned out that I have PCOS. I went on hormonal birth control for a while, but when I went off it a few years later, I didn’t have a lot of the tell-tale symptoms: I wasn’t overweight (though nowhere near as slim as you are), no weird hair growth or thinning hair, no issues with insulin, and no high BP. You can still have it without all the symptoms. I highly suggest you see a doctor who can run blood tests and send you for a pelvic ultrasound if need be.

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I have PCOS and would go months and months without a cycle. It was like this throughout high school and college. We tried for 3 years to get pregnant and PCOS is like a cruel joke. If you don’t get your cycle, then you think you might be pregnant, then everythign seems like a symptom. Then months later you get one, even if it is only for 2 days like in my case. We decided to see a reproductive endocrinologist and found out that the problem is that my PCOS causes me not to ovulate on my own the majority of the time making it nearly impossible to become pregnant on my own. To get my cycles regulated, I had to take progesterone in pill form for 8 days I believe, and it would cause me to have a cycle about a week later. When that didn’t work, we did the progesterone paired with Clomid. Now I am 35 weeks pregnant! Chances are, if your cycles are truely that irregular like mine, you are not pregnant. :frowning:

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My sister has PCOS and while not as thin as you, she is also quite slender. She often has to take hormones (I think) to get her cycle jump-started. She also did not start her period until she was 16, she had it twice and then it did not come back without medication until she was past 17. When she goes through the times when her cycle seems to be “stalled”, I guess, she has a lot of similar symptoms. She gets bloat very badly (we actually thought it was IBS at first), she has gas and such, too - just a lot of gastro-type issues that make her uncomfortable. The bloat could be water retention, I know my sister has diuretics on hand quite often.

I am not a medical professional at all, but you do sound a lot like my sister - I hope everything turns out for the best, good luck!

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I get the no insurance thing. Im completely dependent on my university’s student clinic for all of my health care. :frowning: I don’t even want to think about what would happen if something major happened.

Is there a Planned Parenthood near you? They’re usually really good about providing low-cost/free treatment. Can’t hurt to give them a call.

I don’t know where you are, but [name]California[/name] offers a type of insurance called family Pact. It covers all reproductive needs/issues.

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Sidura reminded me - both here in GA and when I lived in VA, there was a state-sponsored sexual health insurance - it provided birth control, women’s reproductive health, that kind of thing and it was either free or low-cost.

I am lucky to have insurance right now thanks to my job, but I STILL end up going to our local health department, you should see if yours has a women’s care clinic, the last 3 places I have lived have had a women’s clinic. They are done on a sliding scale so you pay based on your income. I pay around 15 - 30.00 to be seen, which is still considerably cheaper than my copay and they provide all of the same services as an OB’s office.

Good luck, I really understand not having health insurance, it’s pretty scary and it’s hard to find options that won’t put you into debt up to your eyeballs, hopefully you live in an area where there is a clinic available or a health department and you can get the care you need.

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@blade - Thanks for the response! I was 99.99% sure pregnancy wouldn’t be an issue because, like you said, body weight/no regular cycle. I just tested to eliminate that .01% of doubt. Health insurance is definitely an issue. I have none, was on Medicaid until I was 21 and I actually should be poor enough to qualify as I’m an unemployed student and my mom isn’t able to put me on hers. They actually took me out of the program because I don’t work enough hours. [name]Even[/name] as a full-time student I was told I’d have to work 100 hours a month to qualify, which I would gladly do if I could find a job that would give me 25+ hours a week.

As far as the BMI/being severely underweight… I know. You’re a medical professional so you probably won’t believe me when I say I have literally tried everything to GAIN weight. (That’s not a jab at you, personally, but I’ve dealt with so many doctors/school nurses etc who think I’m lying that I’ve just come to expect it) I eat 3 square meals a day, plus snacks. In the past I’ve tried everything from doubling my calorie intake to 4000 per day, to drinking weight gain shakes intended for bodybuilders twice a day, to drinking protein shakes with my meals to try and put on weight. I’ve been to several therapists (for non-related issues) and discussed my eating habits with them and none of them ever felt that they were abnormal/disordered. I had one doctor test me for thyroid issues, Marfan syndrome, and something else (can’t remember off the top of my head, it was about 3 years ago) and all her blood tests came back normal limits. Oh, and the cousin is a boy, idk if that makes a difference but yes, he is frighteningly thin but has the same issues, and eats like it’s going out of style. I wish I could be 125lbs. Seriously. I don’t love the way I look and I really don’t love the way other people react to the way I look, but in an “I wish I weighed more” sense. Again, this is words on a computer screen right now so I’m sure it’ll be met with skepticism, that’s okay. I get that a lot.

I’m honestly just glad to read the other responses and know I’m not crazy! Like I said I didn’t think I was pregnant really (that wouldn’t be a good thing timing-wise right now lol), just tested to eliminate the possibility. It’s just frustrating since I was only able to have a “maybe you have this” diagnosis, and then was never able to really find out because of loss of insurance, and then to have the literature say I’m not a ‘probable candidate’ to have PCOS, I just got scared that something else was wrong. I think the ovulation thing is an issue… the cycle before the dr. suggested PCOS they gave me blood tests on certain days, and one of the two hormones (LH or FSH, I can’t remember which or if those are even the right acronyms!) was low. Which makes sense now that I read what blade said about the endocrine system being suppressed due to my weight.

And @alana2uta, congrats on your pregnancy! I think most of my worry about this whole situation is that I got a diagnosis of possible PCOS thrown at me, never had time to really figure it out or have it explained to me by a doctor, and since all I’ve ever wanted is to have kids (later, not right this second!) I get really upset when my body plays games with me. I’m scared it means I won’t be able to have kids when I want to. I’m sorry it took 3 years to get your miracle, but your story is kind of giving me hope for later on down the line, so thank you!