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Advice pls-Hard, Enlarged uterus-ultrasounds today

rosie46
Posts: 18
Joined: Feb 2019

Hi Everyone,

I have ultrasounds today at radiology because I have a grapefruit sized pelvic mass. My lower abdomen sticks out when I'm lying on my back and my doctor said my uterus is hard and enlarged. Does this sound like fibroids? I'm hoping for fibroids, but I have light periods that come like clockwork. I am 46, married, and have two young daughters. So, I'm concerned and very worried. I got HPV 16 about 13 years ago and had a few small pea sized cysts in my upper vaginal wall that I found a year and a half ago. My doctor said I should get a biopsy, but the gynaecologist told me they were just cysts and nothing to worry about. So, against my best judgment, I listened to the gynaecologist and did not insist on getting a biopsy. Now I'm worried they spread something to my uterus. I noticed my lower abdomen getting bigger and hard last September, along with urge to urinate often, and went to another gynaecologist who told me my uterus was normal, and she said I could not get the ultrasound I requested. My cervix looks healthy, but I know there is something wrong with my insides due to my uterus being so hard and enlarged, hence the ultrasounds my regular doctor ordered right away this week. My urinalysis WBC count is slightly elevated as well, 11-25hpf, and normal goes up to 5hpf. My hips have started to hurt and make it hard for me to sleep, but it could be due to osteoarthritis that I already have in my knees. Did anyone else on this forum have a pelvic mass that could be felt and if so, what were your symptoms? Thank you for any insight and advice!

janaes
Posts: 752
Joined: May 2016

Hi rosie46

Welcome to our group. Sounds like there is something wrong. Im not a doctor but sounds like you need to keep going forward with testing. Its best to find out if your concerned. It might not be cancer but further testing will let you know.  My story started on new years eve when i had unusual large blood clots. I went into the doctors and they gave me birth control for a month and gave me a ultrasound and found a large fibroid and 30 days later i had another ultrasound the fibriod got bigger so they sent me to get a biopsy which found my cancer.

I feel so fortunate that my doctors were proactive and since then i tell others to get tested if you are cocerned and have bleeding issues.

Im sure others will be here soon to give there stories and advice as well

If you need to see a new doctor that will take things more proactive i would do it.  You diserve to know what is going on.

rosie46
Posts: 18
Joined: Feb 2019

Hi janaes, What did they do to get the cancer out? I'm scared of any type of surgery and the repercussions, but I know they will most likely need to do some type of surgery in order to get the growth out.

MAbound
Posts: 854
Joined: Jun 2016

My mom had a total hysterectomy around your age for a grapefruit-sized uterine growth along with spotting between periods. I was in college at the time (late '70's) and don't recall her complaining of pain, but she was not big on sharing that kind of info. She never had any other treatment aftwards except for HRT for going into menopause. I don't know what they did as far as cancer testing on tissue back then, but she never had cancer, so it's possible what you have is a very large fibroid. I'd prepare for having an open abdomen hysterectomy at this point. Given it's size, hardness, and your pain, that's the most likely scenario. Your uterus is probably too large for robotic surgery and you wouldn't want them cutting it up to make it smaller anyway if there is a concern that it could be cancer. They'll  test the tissue afterwards for cancer, but I have a hunch that it's not going to be. Worry about that only when your certain you have it. Even if you do, it tends to be slow growing and dealing with it is a one-step-at-a-time process. Surgery is the first step no matter what, so focus on that first.

rosie46
Posts: 18
Joined: Feb 2019

Thank you! By slow growing, do you mean a couple of years? I feel like this mass has grown fast which scares me. But, this is what I see from the outside. It could have been growing for years and just now showing on the outside of my body. From what my doctor says, it's my uterus that's hard, enlarged and protruding from my lower abdomen. Even with fibroids (mind you I don't know what it is yet), I might still have to get a hysterectomy? I'm assuming that's the only way to get the pelvic mass out.

zsazsa1
Posts: 314
Joined: Oct 2018

My mom too had a large mass in her ovary, and large uterus (due to fibroids).  She had a total hysterectomy at about 48.  All of it was benign.  I'm hopeful that will be the case for you, too.

rosie46
Posts: 18
Joined: Feb 2019

Thank you!

rosie46
Posts: 18
Joined: Feb 2019

Thank you so much for your replies! You all made me feel better. I have light periods, and have never had fibroids that I know of before, so I'm not sure what it is. I was just hoping it would be a fibroid or fibroids. I had the ultrasounds today and the tech asked me if I had an MRI or CT scan yet. That and her taking a lot of pictures was a bit unsettling. She also said my doctor would be contacting me within a week to let me know the results. I'm curious to find out the reason why my uterus is so hard and protruding out so far. Your stories have given me a more positive outlook on this. I'm such a worry wart, take things hard, and cry at the drop of a hat, total pansy, so thank you for giving me hope that it's possible this can be managed. I will update with the ultrasound results when I hear back from my doctor. With love and gratefulness, Rosie

zsazsa1
Posts: 314
Joined: Oct 2018

Don't wait! Call the doctor's office today and ask for the results right away.  They can get them today.  Absolutely no reason to wait in fear.  If necessary, you might be able to have that follow up scan today.  BTW, they have to take a lot of pictures because the radiologist is the one who reads the scan, so he needs lots of pictures with measurements.

 

rosie46
Posts: 18
Joined: Feb 2019

Hi zsazsa1,

I tried calling, but I don't think I'll hear back from my doctor until next week since the ultrasound was yesterday. I haven't heard from her yet. It's so hard to wait and find out what's going on! Do they need to take a lot of pictures no matter what, or do you think they take more if there is something out of the ordinary?

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

Please come back and let us know the results from the ultrasound. As others have said, not every mass in the uterus is cancer.

rosie46
Posts: 18
Joined: Feb 2019

Thank you!

zsazsa1
Posts: 314
Joined: Oct 2018

Rosie, I can tell you that because a tech does the ultrasound, but then it is read by the radiologist, the tech does need to take a lot of measurement pictures from all sorts of views.  So the fact that the tech did a thorough job and took a lot of pictures doesn't necessarily mean that there is something terrible going on - it could just be that they felt that was what was necessary to give to the radiologist.

I am sorry that you weren't able to get results before the weekend.  Try to keep busy with distractions over the weekend, and call them again on Monday morning for results.

rosie46
Posts: 18
Joined: Feb 2019

Will do! Thank you for your advice!

rosie46
Posts: 18
Joined: Feb 2019

Can they get my results that quickly if they were just done Thursday? They told me it would be about a week on Thursday. I'm thinking they look at the results and the doctor has to decide what the next step will be, right? I'll go ahead and email my doctor tomorrow since I already called Friday. If I don't hear back from her by Monday, I'll call in the afternoon or Tuesday. Thank you!

rosie46
Posts: 18
Joined: Feb 2019

I'm freaking myself out. I started getting pain in my hips in the last week and it's hard to sleep at night. I get scared thinking this mass is causing pain in my hips. I was thinking about my history and this pelvis mass. I don't have any known history of fibroids, but I'm trying to be positive and think please be fibroids or one big one. The scary thing is this mass is growing fast and I've felt twinges, but no other symptoms but my belly looking like I'm 3 months pregnant when lying on my back and hard uterus since September, watery discharge the last couple years (I would wear a light pad and thought it was a normal part of getting older), peeing excessively (now I know this is due to the pelvic mass pushing my bladder down). I also think about having HPV 16, the vaginal lesions in the posterior vaginal wall that the gynecologist said many women get after having kids (June 2017), and now this pelvic mass. I'm very scared. I should have listened to my family MD two years ago when she said to get a biopsy and instead I listened to the gynecologist who said what I wanted to hear. I think I'm going to die from this mass and from being stupid and not doing what my family doctor said. My kids are young, what was I thinking? I should have done something sooner. Now I've got to get this mass out. I can't sleep from the hip pain and nightmares. How to get sleep and stop worrying about dying? How to be more positive? I haven't heard from my doctor yet about the ultrasounds. I know I'll be getting an MRI next due to this large mass in my uterus. How else will they know if it's benign or not? I can't stop thinking about this and crying. I feel like the doctor is going to want to take everything out and I want to keep my ovaries to keep my mental capacity (I already have forgotten streets in my own town among other things and my mom has alzheimers) I also don't want to have worse incontinence problems than I already have. I feel like my husband as a man does not know the severity of what could happen. He was even surprised I was having a TVS ultrasound. He didn't think it was a big deal and thought I was just doing the one on the abdomen. I do usually take things way too hard and negatively so I feel like he thought I was exagerrating. He never takes anything hard and instead tries to focus on solving the problem. That's healthy and helps me. I have one friend I feel comfortable in talking with about this. I'm going to make an appointment with the psychologist Monday. That appointment can't come soon enough. I don't have anyone else to talk with except my husband and a good friend and I want to spare them from all the negativity.

zsazsa1
Posts: 314
Joined: Oct 2018

Rosie, you can come here and talk with us about all of this.  We understand, because we've been there.  You don't have to worry about shielding us from your worry!

IF you wind up needing a total hysterectomy, don't worry about the loss of estrogen having an effect upon one's mental capacity.  It really is not that big a part of it, at 46 you were near menopause anyway, and if necessary and medically appropriate, there is hormone replacement therapy that you can use.  

Don't beat yourself up!  You went to a specialist, who told you there was nothing to worry about, so of course you took the specialist's advice, especially since anyone would want to hear that nothing was wrong.  And so far, you don't know that this is anything other than fibroids.

Of course I have no way of knowing anything about what you do and do not have.  But there is just no way that with cervical cancer (which is what HPV causes), you would have a normal cervical exam.  It starts in the cervix and then spreads from there.  So I think that cervical cancer is unlikely.

I had fibroids when I was 28 that rapidly grew so much that it was like being 4-5 months pregnant.  I could feel the hard mass of them, I had the same thing you're describing with the hard lower abdominal mass and trouble with increased urination.  It was very uncomfortable, but it was all just from fibroids.  Also, I began developing little firm nodules on my perineum, perianally, and who knows if internally too, starting when I was in my early 40s, and was told exactly what you were told - that they were nothing, which has been true.  Both of these things had absolutely nothing to do with the uterine cancer I developed almost 30 years after the fibroids, and 15 years after those nodules began.  So it is very, very possible that the GYNs were right, and that you do NOT have cancer.  You are doing what you need to do now, getting the workup, so it's not like believing the possibility that there is nothing life threateningly wrong with you is harmful.

So I have given you true feedback that gives you very valid reasons for plausible denial.  It's a very useful tool to fight anxiety.  We get anxious over things we cannot do anything about, and until tomorrow, when you can call the doctor's office and INSIST that they give you the results, whether in person or over the phone, you can try to be in denial.  Tell yourself that there is every reason that this is just a benign process (and that is true - it is very possible that this is all just fibroids), and channel your inner Scarlett O'Hara.  "I can't think about that today!  I'll think about that tomorrow."

Hang in there, Rosie!  You will start to feel better psychologically tomorrow when you can start DOING something about your health.  Right now it's just a waiting and worrying game.  Try to keep busy and distracted.  Taking care of young children is a tremendous distraction.  Do things that are comforting to you that you enjoy doing with the kids, maybe watching videos with them, or playing board games with them, or going someplace fun together.  Do anything that is distracting to you today - you have a get out of everything else free pass for the day.  And if you need to anesthetize yourself with bingeing Netlix overnight tonight because you cannot sleep for worrying, or want to try to take something to help you sleep tonight, like Benadryl or an anxiolytic if you have one on hand, do so.  Then call the doctor's office tomorrow as soon as they open and insist on speaking with your doctor, or the doctor's nurse, or someone who can get the ball rolling on getting your results.  If they tell you you have to come in, tell them you are paralysed with anxiety and that you MUST be given a same day appointment.

rosie46
Posts: 18
Joined: Feb 2019

Thank you so much for calming me down! I've never heard of plausible denial, but it works. I am going to take your wonderful advice and think differently about this. Your advice helps me put things into a positive perspective. Sharing your story about your fibroids and nodules has made me feel better too, knowing that someone else has had the same issues. My nodules (vaginal lesions they called them) are everywhere too, the perineum, posterior vaginal wall, etc. The gynecologist kept saying and there's another one. It was concerning to me, but she was confident that they were normal. It brings relief to hear that yours were normal. What's nice about these forums is finding that you're not alone, and others that have been through the same thing. Thank you for sharing your story! You are a blessing and I appreciate your help in my time of need! Thank you for sharing your light:) Here's to a better night's sleep tonight:) Many blessings to you. Love, Rosie

rosie46
Posts: 18
Joined: Feb 2019

Hi Ladies, The result from the ultrasounds is it's a 14cm ovarian cyst on my left ovary. Does this mean diameter? OB doctor said laproscopy can be used and I was shocked since the cyst is so big. I guess it's the same prognosis for big and small cyst laproscopy.  If they see a borderline cyst they will do more radical surgery.  She removed a polyp from and did a biopsy of my cervix. She also had me do a CA 125 test. I'll get the results of all of the tests this week. Trying to get an appointment to get the cyst removed asap so it doesn't grow any bigger. Thank you for all your help!!!

zsazsa1
Posts: 314
Joined: Oct 2018

Sounds as if it's all a benign process.  Best of luck to you.  

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