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Uterine Polyps with PCOS and Scheduled Surgery.
Hello. I’m reaching out to see if anyone has ever gone through anything similar and to get advice. I was diagnosed with PCOS (polycystic ovarian syndrome) in 2015 when I was 25 and never really had any symptoms beyond weight gain. About 1.5 years ago my period started to get super heavy and last longer than a week. I was on nuva ring (birth control) at the time so had to stop taking it because I was putting in tampons so frequently. There was a point where my period lasted 4 months. I called my gyno and we ran labs and it was due to the hormone imbalance caused by the PCOS (too much estrogen, no progesterone). I was getting super dizzy and ended up passing out and went to the ER which then led me back to my gyno. They did a vaginal ultra sound (April 2021) to which they found a thick uterine lining (3 cm) so not much was visible. They did a blind biopsy which had negative results. I started seeing an endocrinologist to help w the PCOS but nothing has changed. I got the progesterone IUD in and almost 2 weeks later I was in extreme pain and had to go back in and they found it in my cervix so it had to be removed. I’m still bleeding extremely heavy and passing clots. I’m in constant communication w my
doctors and she prescribed progesterone since my body isn’t making it but even that isn’t stopping the bleeding anymore (used to be a solve before). I went back last week (Oct 2021) for another vaginal ultrasound and she discovered a polyp in my uterus but it was hard to see due to the thick uterine lining. We have now scheduled a D&C surgery and hysteroscopy to remove the lining in my uterus (and send to pathology) and put a camera in after the fact to see what is going on. Ive also lost about 40 lbs since April w no diet or exercise change and I’m scared that what is going on in my body could be considered a perfect storm (on some websites for uterine cancer diagnoses). I know I shouldn’t put that out there but I’m scared and am wondering if anyone has ever been through this.
5 Replies
Brighty
7483 Posts

@Christina0214 welcome!I'm so sorry for what you are going through. I dont have experience with this but I'd like you to meet @Raintwist

@onestar

@Zatvan @Suzane who might be able to shed some light on things for you. We also have a uterine cancer discussion under ‘forums ’'cancer types ‘and ’uterine '. Sorry I couldn't be of more help but hope you can connect with the ladies soon. We are here to support you with whatever you find out.

@Christina479 I'm glad you are being persistent about getting help. I was diagnosed with PCOS in my 20s. My periods were totally irregular and I had trouble getting pregnant. Ironically, when I was in my 40s and expecting to go into menopause and have irregular periods, my periods started to get regular. Two years later I was duagnosed with breast cancer. My oncologist told me there is no evidence but I'm convinced. I don't mean that if you have PCOS that you will get cancer. I'm just sharing what happened to me.

As for the thickened uterine lining, I had that as well as a result of the medication I took to try to keep my breast cancer from coming back. I was monitored very closely. I had multiple DNCs. I had polyps removed. I had internal ultrasounds. I had endometrial scrapings to see if I had cancer. Ultimately my same came back with precancerous cell. I asked why it was so problematic to have a thickened uterine lining. I was told that the thicker the lining, the higher the risk of developing endometrial cancer. No one had told me that over the years.

My period, which started to occur after no period for years was the sign that something is wrong. It could be that your constant period is your body trying to get rid of something in your uterus that could hurt you.

I am not trying to scare you. I am sharing my story to keep pushing for answers.

I am here at anytime if you want to talk. Just type @ followed by cancertakesflight. After typing a bit of it you should be able to hit the space bar for a list of names. When you select mine it will be highlighted in blue.

BTW. Although I had precancerous cells no cancerous ones were ever found.

If you are willing to continue to share, I would love to know what steps are being taken to help you.

Hang in there.

Cancertakesflight

Boby1511
596 Posts

@Christina0214

hi there.

I have uterine adenosarcoma (a type of soft tissue cancer.) stage 4.

I had spotting between periods and some pain.

but no huge symptoms till I couldn’t pee. Tumor was then large enough to damage my bladder.

Hopefully you get some answers and relief soon.

@cancertakesflight Thanks for the information and getting back to me. I'm just a few days away from the D&C and hysteroscopy and getting more nervous. Over the last week the pain and bleeding have severely intensified to the point where I can barely stand or walk. Plus, I'm setting an alarm every 2 hours to wake up and change tampons/pads so I don't bleed through. It is pretty mentally and physically taxing on me so I'm ready to find out what is going on. With the surgery on Friday I am guessing we'll have pathology reports back some time next week?

@Boby1511 I'm sorry to hear that. How are you feeling?

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