PCOS symptoms but NO cyst in ultrasound??!!

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Hello ladies, first of all let me just say how happy and comforted I am when I found this website as I am in a great need to talk to people with similar experiences.

I am 23 year old female, never been sexually active, non smoker or drinker. I eat healthy and excersice whenever my pains from hell allow me. Three years ago in March, I was rushed to the hospital via stretcher in an ambulance and spent an entire day in the hospital. I had severe abdominal cramps that were nothing I've experienced before. These cramps were excruciatingly immobilizing, pain radiated to my back, and all the way down to my legs I was beyond weak I couldn't stand on my two feet they felt like two pieces of thread I had to literally drag my body to the bathroom I had a slight fever I was dizzy and nauseous I was fainting too and I threw up like there was no tomorrow.... Infact I began to think that was the end for me

In the emergency room, I was swarmed by nurses and doctors, tests, x-rays and even an ultrasound were performed on me that is after I was dozed several times with morphine via an IV

Long story short, they found NOTHING that day everything came out better than normal, so the conclusion of that visit and many others that followed was simply a painful period and sometimes brushed off and blamed on endmotriosis. I have seen three Gynecologists and each one was worse than the other, they all put me on treatments (hormonal/contraceptives of some sort or another) which managed to make me feel worse and my symptoms too. I quite all of them as well as the hope to a healing cure.

My last stop was an Endocrinologist, whom I saw for the first time two weeks ago and within 15 min of our session he said: "I am almost certain you have polycystic ovarian syndrome"...... I wanted to cry I really did, he requested a hay of tests and I did them ALL and now I'm waiting for the results to come so I can go see him and see where to go from there....

I told him I have acne, irregular cycles sometimes, my hair has fallen out and thinned generally no bald spots, I'm extremely moody, I cry for absaloutly no reason and I experience mood swings frequently, I often become incredibly anxiousabout everything and anything regardless of how pethatic and easily frustrated and irritated too. I have gained some weight particularly in my abdominal area and I find it hard to lose weight as if my metabolism had waved bye to me forever. I experience a severe sense of fatigue two weeks before my period, during my period and up to three to five days after my period. My menstrual cycle remains a plague from hell, aside from the other symptoms I mentioned earlier I should also add that I have few hairs growing around my nipple area, I have a bit of a dry skin not severe or anything, I have this brown pigmentation on one of my breasts, I also-ran experience insomnia regularly and days close to my period I have this feeling that takes over me a feeling of general unwelness I know that's not a word but that what I feel and I'm cranky and I have pain and my apetite is a bitch because I just can't eat and if I do just a bit otherwise I feel sicker. I've been prescribed Oxycodone (percocet) and Morphine to take when my cramps are too severe, I've been going to the ER way too long for period cramps which seems stupid right??? I got tired of it and I'm sure the folks in the ER have as well. Everytime my bloody period is about to start I look like I'm in labour and I sound like I'm in labour too and I swear I can not help it the pain I experience sometimes a whole week before my period and during my period is so bad so excruciating so severe it makes me cry and makes me wish I cease to exist

Everytime I go for a painful ultrasound they tell me no cysts were found and I look at all the pain that I experience and I just don't get it, my endmotriosis is invisible unless I go for a laparoscopy just so they'd confirm whether I have it or not but even the supposed treatment for endmotriosis that my gynecologist put me on my body seemed outraged by it and seemed to fight it and resist it and just made my symptoms worse!!!!! And my endocrinologist says that is all because of PCOS... Does anyone here think he's right? Anyone here been in a similar situation? Have you been diagnosed with PCOS, even if according to the doctors there were none detected in the ultrasound?? I'm at a loss here :'( am I crazy?? Will I ever get better??? Is there any hope for me? Am I the only one going through something like this?

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12 Replies

  • Posted

    If it is pcos the cysts willcome and go and sods law says they will never present themselves when you are having a scan. My daughter has it. She gets fatigue often, irritable, has gained weight, also has hair where women usually wouldn't, some on her belly etc. if nothing works at all and this happens every period, have you considered surgery? I know you are still very young and may want children but I do know of young people that have chosen this just to be rid of the pain. I do hope things get sorted for you soon! I know only too well how painful gynae pains can be x
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  • Posted

    I can't offer any advice, but I can tell you that you are not alone. My story is almost identical to your story. In short, irregular periods, infertility, facial hair, weight gain, ibs, painful periods... I just lost about 75 lbs and I am fighting to keep it off. I have been seeing an alternative medicine doctor and acupuncturist for the ibs. I use the paleo diet to keep off the weight. It helps alot and I started getting my period monthly now.

    I went to the ER last month because I was faint, flush, sweaty, muscle cramps and extreme uterin pain. Started getting daily headaches on my leftside of my temples. I was at work, on the ground and could get up. Had to call an ambulance. Lots of drugs and one ct scan later the er sent me home... Nothing wrong. Sent me home with pain medication and antispasmodic medicine.

    I missed a week of work and was ultimately put on narcotic medicines for pain, metformin for period regulation and an low level antidepressants for ibs. Also given an antiinflammatory for headaches and uterus pain.

    All of my doctor's think it was female related, except the gyno. Last night the gyno told me that this is the pain every woman goes through and I just don't know that because I don't get my real period normally. She informed me this was a good thing and I should try getting pregnant. Then offered me more pain drugs and fertility testing... Even though I specifically told her I didn't want to worry about pregnancy but instead I wanted to understand the cause of my headaches and uterin pain.

    Not feeling too hopeful right now. My next period should be here in a few days and I hope all these medicines pay off. I don't have advice for you, but you are not crazy and other women are feeling pain as well. Some day the medical field will know more and acknowledge whatever it is we are suffering from.

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  • Posted

    I am going through the same. All tests have come back clear, had a internal test from the Dr also an internal scan as could not see clear on ovaries and nothing. The dr last night thinks it's IBS but I don't have any symptoms only stomach pain in my right side. I get really bad pain during my cycle and it's just full of clots. As been different since I had lettz in May but Dr at hospital says it's healed ok? So confused as is it IBS or something different that's not showing up on a scan. My dad thinks it might adhesions from my appendix operation.

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  • Posted

    This is old, so i dont know if you still need help.

    But both of my ovaries are covered in cysts and absolutely NO tests show them, except for a cat scan WITH contrast. Pelvic ultrasounds, vaginal ultra sounds, regular cat scans, none of them ever showed my cysts.

    When i was about 14 it took 5 ER visits and being told i am crazy before they finally found a huge ovarian cyst on my right ovary that ended up needing to be surgically removed (cut like a c-section).

    And since that first huge one i have consistently had several tiny ones completely covering both ovaries.

    It is very frustrating and painful for me. I'm 21 now and most doctors still wont listen and do a ct with contrast when they want to look at the cysts to see how many/how big they are. They always try to do ultra sounds. Luckily the obgyn i found listens and does the ct with contrast.

    Hopefully this helps someone, if they can't find your cysts (even if you dont know for sure that you have them) ask them to do a cat scan WITH CONTRAST. The regular cat scan never picked them up for me. I'm not too sure why though.

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    • Posted

      Hi! I’m having very similar symptoms. Thanks to your advice, I asked for a CT Scan with contrast that will be done in monday. I’ve been in pain for 2 months now and im wondering if you’ve been diagnosed and what’s the treatment? Thank you so much for the advice!

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  • Posted

    WOW..... Thought I was alone. I just went to the emergency room 2 nights ago with the same EXACT symptoms and all the test they ran including a CAT scan with contrast basically showed nothing including NO cycst on my ovaries. So it just looked like I was having cramps! I was there for 9 hours only for them to tell me they didn't find anything and they sent me home with pain meds. But this is some of the worst pain that I have ever felt before. And the other bad part about my situation is I haven't had a cycle in about 2 years due to having radiation treatments. But from time to time I still have some of the premenstrual symptoms. And I have only had similar pain like this before when the cyst on my ovaries burst . But this time they didn't find anything......nothing! I don't know what to do. The only way I can survive is by pain medicine (Norco). And my kidney doctor doesn't want me to have any pain meds. He thinks it is an infection and prescribed antibiotics and they aren't doing anything.

    I stil have a few pills left from my ER visit. But once those are gone

    I have nothing to take, nothing that will work until I can figure out a solution or get more pain meds. I do have Percocet but they now make me so very nauseous and sick to the stomach! I'd rather lay in the hospital on morphine until they figure out a solution or until it passes. I wish someone could help us all out with this issue because we are all just miserable!!! 😢😢😭😭

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  • Posted

    It is kind of refreshing to read this post! I know you are going through a lot and that is horrible, but I feel like I am going through something very similar! I am waiting until my period starts and I have to go get an ultrasound to check for cysts. I just got a ton of hormone testing done today, so we will see what that shows. I have pretty much all the same symptoms as you, so I will be interested to see what gets found for me. I just wanted to let you know you are not alone in your symptoms and frusterations!
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  • Posted

    I read your story and it is just like mine. I almost cried reading this because I have been through the same and still looking for a remedy to this. Some days I feel like I am absolutely fine now but then I get a reality check and it is scary. I too am moody and frustrated mostly. I get irritated very easily, moody almmost every day! Although in my first ultrasound, the doctor detected cysts on both the ovaries and after almost 6 months of medication and workout and diet, the second ultrasound showed no cysts but all the other symptoms still prevail. Another doctor gave me these M2Tone tablets and I thought it is working but last night I had this killing pain on my left side. my leg was paining like someone had stabbed it and I couldn't move. I felt so dizzy and didn't know what to do. All this is getting into my head and depressing me. I wonder if this is gonna last forever?!

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  • Posted

    I assume you are in the States but I posted on here the other day linking to nhs.co.uk. I will do it again. I hadn't heard of PCOS until the other day when someone else posted on here asking of acne played a part.

    Have a read of this. oy may help until you actually get your results and some action! Good luck, it sounds a total nightmare for you!

    Link

    https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/

     

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  • Posted

    hello, this post seems a bit old, but actually newer than others.  I don't have exactly the same problem, but I was checking for the possibility of what an ultrasound might miss.  So, this was very eye-opening to me.  You see, I was diagnosed with endometriosis, and had a uterus ablation done.  I awoke in terrible pain, but figured that could be expected.  However, the pain has hardly decreased....and the surgery, which should have removed my entire lining and completely stop my periods- only INCREASED my periods.   I know have extremely painful periods twice a month.  I feel like I'm having back labor, but also the pain in my hips and top of my thighs and it is just too much.  My legs go numb, and I can't walk or stand for more than five minutes.  Some days, I can't even sit in a chair and have to prop myself partially prone in my bed.  I have not worked in 8 months.  3 months before the surgery and now 5 months after the surgery.  I'm a single mom, and I'm going to loose my house.  The ultrasounds show nothing.  I don't even think my doctor believed me about the pain or periods.  In fact, he kept telling me that "I was not having any periods," and it was just discharge from the surgery.  My last appointment was scheduled during my period.  He looked completely surprised. (he is not a bad or non-caring doctor, but he is extremely baffled).  He ordered another ultrasound...but?  Those don't seem to work??  To be honest, I have all the symptoms of ovarian cancer- I hope this is not the case- but I've also been so increasingly fatigued, and it comes on like a wave- I can do nothing but lie down, even if I'm just playing quietly with my kids.  I just don't know why doctors miss so much!  I see someone put on this thread that they utilized a CT with contrast, and that was the only thing that showed up her cysts.  They have reported one cyst on my ovary...but this really makes me think they are doing everything as a routine and missing the bigger picture?  Something is really wrong.  I hope we all get the answers we need, and that women's health care gets some upgrades.  There is too much of us left in the dark! 

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  • Posted

    Hello. I've had the same issues minus the acne & hair loss. I had very irregular periods that lasted months! I tried every bc pill out there. Nothing helped. I finally was advised to get the mirena iud. I was against putting something in my body but after bleeding so much I needed a blood transfusion I finally agreed. The iud insertion hurt like hell! The following 6 weeks were rough & I wanted the iud out, but I stuck it out. A year and a half later I'm great. My periods are short and happen monthly at the same time each month- something I never experienced from 14-27. I feel I've gained weight, but that could be the iud or relationship weight ????? it may be something to consider. I saw specialist in Los Angeles and Orange County. Had annual ultrasounds, so many paps, CTs, and did so much blood work. All my hormone levels were perfect, all the ultrasounds were normal. Nothing provided relief until I got the iud.

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  • Posted

    Hey, I thought I'd add a couple things that haven't seem to be covered yet. The symptoms described in the original post and a few others sound like PCOS i.e. irregular menstrual cycles, infertility, acne, weight gain, hair growth in face or chest, darkened skin usually in folds like arm pits or neck or groin, and often high blood sugar levels. The term PCOS is somewhat a misnomer. When they originally described the condition they found it in women with ovarian cysts, but as many of you have found out through experience it turned out that the cysts are not required to have this diagnosis!

    Just a couple more things, the symptoms are related to a couple main hormone issues, higher levels of the "male" hormone testosterone, which leads to acne and hair growth, and the other being insulin resistance, which can cause the darkened skin, high blood sugar levels, and weight gain. Both of these likely contribute to irregular menses cycles.

    Once the diagnosis is made there are a couple different treatment options that can help. The main treatment is weight loss (obviously easier said than done!). The medications are directed at treating the other symptoms, a med called metformin is used to deal with the insulin resistance and lowers blood sugars. Oral contraceptives (or mirena) can help regulate the menstrual cycle, which is important not only for comfort but also to reduce the risk of developing endometrial cancer later in life. The last med you could add if the acne and hair growth don't respond to the first therapies is one called spironolactone, which helps combat the higher testosterone levels.

    Sorry for the long post but hopefully some of this info is of benefit.

    Lastly, I would like to raise a bit of concern about getting repeat CT scans. They are a significant dose of radiation and each one raises the risk of developing cancer later in life, particularly if you are young! They are great if you truly need them, but just keep in mind that cysts are not necessary to the diagnosis if you have all the classic symptoms and bloodwork.

    All the best to everyone here!

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