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Abdominal pain
Shalz
7 Posts

Hi All,

I am new to the forum and would like to know if someone can relate to my symptoms. Roughly 2 months ago, I started having regular pain in the legs radiating towards the sole of my feet, not unbearable but noticeable. I just kept ignoring it and thought it could be due to work from home and sitting in front of my laptop for hours etc. A few day later, I was napping in the afternoon and was woken up by intense pain as if something is being pushed out of my rectum. I thought may be it is due to the air and quickly rushed to the washroom but nothing came out, no gas, no pee, no nothing. I was scared what is happening but the pain slowly subsided from a level 8 to a level 2.

Every day after that day were abdominal pains, lower pelvic pains etc and went to the doctor. I got blood tests, PAP smear and ultrasound done. CA125 is 36 and scan shows a number of fibroids, 2 of them are quite large. A number of other small ones as well. Don't know when the PAP results will turn up. I am waiting in line to see the Gynae.. looooong wait.

So I have constant abdominal pain every day, some days are better than others but the pain does not leave me for a day, discomfort, constipation issues, every night I have to bear abdominal pain. But the pain does not feel like menstruation cramps at all, it is weird pain as if I am hurting inside, mostly on lower right abdomen. Lately I feel like the vaginal discharge is more watery and more frequent than ever.

Am I going crazy? Does anybody else experienced anything similar?

13 Replies
Whitelilies
1901 Posts

@Shalz Hello and welcome to our caring community. Thank you for trusting in us, and sharing, how you feel…..

First of all; you are NOT crazy. Period.

You have pain, that needs to be addressed. Period.

I am not a Doctor (everyone…..be thrilled about this fact !!)…..please, make an appt with your Family Dr……if the pain is just unbearable…perhaps you need to pop in to the Local Emerg Dept……

For now….please start writing, your pain….when? was it after a meal? where? just legs? throughout abdomen? date? how often-daily-nightly? This info WILL help the Doctor, to decide on next steps.

During these crazy/covid times….we MUST be self-advocates….we must raise the red flag for our pain/discomfort…….it is NOT OK, to have such pain, you described……it did not go away!! A thorough check up may be in order…..a few tests….perhaps a CT scan in abdomen….perhaps a colonoscopy……again; let us hope your Family Dr is skilled and will help you, quickly…..

I have not had such unbearable pain……If I did….I would reach my Family Dr/and/or the E.R…as I shared, above…..no harm to get medical attention and tests….you may be very happy you did.

Please let us know, when you catch your breath…..how you are doing…..
Welcome again Shalz

Whitelilies

#pain is not OK

Boby1511
786 Posts

@Shalz

hi there,

I had a 12 cm mass in Dec 2019. I had some pain, then a lot of pain. But my pain was mostly because I could not pee and some constipation. My tumor was squeezing my bladder closed and pressing against my colon. Originally they thought fibroid and maybe cancer. Fibroids are very common. And they don't get alarmed with fibroids till they hit 18cm. My surgery was May 2020, the tumor was then 28cm.

I had a lot of distention before surgery. I looked 9 months pregnant. Stomach hurt to touch.

I had the discharge for about a year before Dec, I kinda put this off. Not the wisest decision.

After Dec, very little discharge but I also needed a catheter to pee, so there was probably no room for the discharge. Was also pooping a little blood by then.

My CA125 was 300 and then 2 months later was 625. But this number can be affected by other factors and medication so not the most reliable. If your still waiting in 30 days, you could go get another CA125 done, to check if the number is still within normal range. Also my kidneys started to fail, you can also check this with a blood test.

I have uterine adenosarcoma with sarcomatous overgrowth. But this is a quite rare cancer and there are very few of us with this diagnosis. Something like less than 1% of all uterine cancers will fall into this category.

Maybe follow up and make sure you get your place in line. Also if you get any distention, you could pop into emerge. Get another CT. Its the change in size they monitor.

Sending you best wishes. Hope you get some relief and answers soon.

Shalz
7 Posts
Hi Boby1511‍,
thanks for responding to me. One of the mass is 11 cm.
Sometimes I don’t feel if I need to pee & only when I use the washroom I find that I should have felt the urge.
Is it okay to get clear discharge? I am currently having more than normal but it is odourless & watery. I never had this before, not sure, I may be overreacting to things or being more conscious. Not sure…

I do feel bloated often but lately this everyday abdominal pain is making me more anxious. I just hope to get all the results sooner.
Boby1511
786 Posts

@Shalz

11cm does require follow up. That is large. But fibroids are very common and can get very large.

At 12cm, I could no longer pee on my own. I had the urge. I just physically could not pee. I had a catheter put in so I could pee. Kept that to almost surgery, almost 4 months. Hurts lots when you can't pee. Can cause death eventually, it's probably part of the reason my kidneys were failing. But my tumor grew very quickly, about 4cm a month, it didn't stay at 12cm.

I think my docs mentioned its the blood between periods that is a bad sign. I had blood all the time. Not a river but some every day.

I did eventually bleed rivers of blood thru the butt, that was nasty. You would think I should have been more alarmed at that point, but I wasn't. lol. I didn't lose the mind till after surgery and the doc told me I'm dying. Course I think they are wrong now, as I am still here and doing well.

My docs also mentioned a foul oder can also be a bad sign. It may be good that you aren't noticing any smell. It was hard to tell with me as I was bleeding all the time, blood smells bad to me.

Fibroids can also hurt. And you have a lot of mass, which they are currently are assuming are fibroids.

Hopefully you get into the gyneo soon.

With me, with my early scans, the techs reading those things, mentioned the end trails of my mass looked like cancer and warranted thru attention.

Did you have a CT too? Or just the ultrasound? They should be getting you a CT eventually I would think.

Any pain, you can go to emerge, belly pain, the emerge will CT. Get a copy of the report. See if your masses have grown any, see if the report mentions the endtrails.

Your CA125 is in normal range, its a blood test for certain types of tumors. Its not the most reliable test, but for me it did report correctly. After surgery my CA125 was back in normal range. Right now, it went up a little but still under 50. I was 625.

Hugs. Don't be too hard on yourself. Stress can bring its own problems.

Boby1511
786 Posts

@Shalz

The only time I had leg pain was when I got a blood clot after surgery. In the groin. Felt like I had a stroke on the left side. I had been up and walking a little, then poof, the world went black. I woke up back in bed, they got me to CT. Then said I had a clot and abscess.

But the clot they figure was due to surgery stress and only maybe a little to do with cancer. I'm on blood thinners now, as they are not sure, and cancer can bring clots.

After that clot (happened a couple days after surgery), I could no longer walk. It was very noticeable. And hurt. A lot. And I was on a lot of pain meds at the time.

Boby1511
786 Posts

@Shalz

Did they biopsy the inside of the uterus? Almost like going for polyups. They just go up there and grab a piece. Hurts I heard. I was supposed to get one of these but timing with covid and my health getting worse it didn't happen. But this test can confirm if cancer. Not sure if the gyneo does this or not. I was seeing a specialist at that time.

Boby1511
786 Posts

@Shalz

My stomach distention was also very bad. It felt more than bloated. It was a pressure that never left me. I kinda think maybe its what being 9 months pregnant may feel like. I had the pressure all the time and the feeling this thing was taking over. I couldn't sit up anymore for any length of time. I vomited if I did get up.

I was very close to death at this time thou. I was sleeping a lot. They got me into emergency surgery at the end. My surgeon said I likely would not have lasted another week. I did die twice on the table due to heart failure, too much blood loss.

My tumor was 28 cm at that time.

Boby1511
786 Posts

@Shalz

I had the best surgeon ever thou. He mentioned to me in Nov, that most surgeons would have just closed me up and left me for dead. The surgery was very complicated and took hours longer than scheduled. They inched out my tumor and saved me.

Shalz
7 Posts

Hi @Whitelilies,

I am keeping a diary of all my symptom… about the pain, my doctor said keep taking over the counter pain killers.. & wait to see Gynecology

Shalz
7 Posts

Hi @Boby1511,

only ultrasound has been done, no CT scan, no biopsy, no other tests.
I hope Gynae may get it done. My doctor was very precise to me & didn’t discuss the test results in details at all. Just mentioned that my referral will be sent as ‘urgent’ … I don’t know what it means, may be that I will get ahead of the queue.. if it not so serious than why refer urgently? Is there something that he could not understand or read?
ultrasound tech did not let me see anything on the screen at all & said you will not understand & asked me if I had the blood tests done.

when doctor has the info then what’s wrong with sharing it with me.
if the mass was inside me for a long time, why is it causing trouble all of a sudden? Anyways, I ca do anything but keep waiting..

thanks, for sharing your experience, I really really appreciate it !

Boby1511
786 Posts

@Shalz

Hi there,

You can get a copy of the ultrasound thru MyChart or you can request from the hospital.

Those tech that do the ultrasound can't give you the results (they are not allowed), that is up to the doctor. But those techs know if needs immediate attention and would have referred to in hospital if it was that immediate. They keep you. Once a doctor has read the report, they can release it to you.

Urgent is good, you do need follow-up, if it is a fibroid and causing you grief they will likely do surgery and go get them, then biopsy. Your GP can't do any of that, so he/she is not going to interfere. Also your GP likely doesn't want to start the next steps as you have no gyneo yet to pick up the next reports.

Fibroids grow, so maybe they were smaller before. You also have several, so it's an issue for sure. I would think that many is more a sign of fibroids than cancer. But I am not a doctor and can only speak from my experience. They sound localized, which if cancer is still the better news. Cancer is more advanced if it has spread to distant spots.

My docs too said I likely had my tumor for some time before it decided to grow rapidly. Follow-up takes time, even after they confirm cancer.

You don't want unnecessary pain meds. Pain meds can bring their own problems.

If you have unmanageable pain, then I would suggest go to emerge. They will likely CT and can prescribe something. Your likely going need a CT at some point. I've had several CTs, you get blood work done (they check to make sure your kidneys can flush the contrast material), CT itself takes about 10 mins. They hook you up to an IV, scan you with and without contrast. Sometimes there is no contrast. But I think if the contrast shows in certain organs it tells them something.

Hopefully urgent means the next couple weeks.

Sending you hugs.

Boby1511
786 Posts

@Shalz

I would urge you to go to emerge if your pain is unmanageable.

If you are managing and can wait for your referral then keep busy, take your mind off this. You can't change the next steps or outcome. Stress is not good for you.

Fibroids can cause problems.

Cancer can be treated.

Your GP probably doesn't even know what the next steps will be.

Maybe they do that uterine biopsy before CT. Or surgery before CT.

I had emergency surgery twice. First one took 2 weeks to get to table. I was put on my gyneos emerge list, but you still have to wait on the hospital for an opening. Second one took 4 days. But I was very ill at the time. Barely functioning and in hospital already as an in patient, these are done first.

I know the unknown if very stressful. But stress not good for you. Take a break and stay busy.

Hugs.

Shalz
7 Posts

@Boby1511

Thank you so much for all your support! This communication means a lot to me. I will try my best to remain positive and keep myself busy, but it is really tough to keep this chattering mind shut up.

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