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Pardon my french but son a gun, the lump that the doctors said wasn't there

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

is now a larger distinctive lump.  No one could feel it and I've had quite a few scans since I first thought I felt it and nothing has been showing up.  I had an appt in December and no one felt it.  I don't understand why I'm feeling it and they are not. I'm at a point where I just can't worry anymore but I'm making another appt. to have it checked.  It's very distinctive now they can't possibly not feel it.  What a pain in the neck.  I am finally at peace after 4 years so I really hope it's just some stupid random lump.  I just got over most of the emotions and started to put this behind me.  I'm happier, I've even been dating, I've been going to physical therapy to try to improve the pain, I have muscle relaxers for the intestinal spasms. With some falling off the wagon days into the blues, I was finding a new normal.

Trubrit's picture
Trubrit
Posts: 4964
Joined: Jan 2013

Have you been to see more than one Doctor? 

Where is the lump? I'm forgetting what you must have previously posted. Sorry!

Do they not know how scary anything that happens to our bodies is? And a lump! Well, there's only one place even a normal person (and you know we're not normal) goes to, so yeah, its just natural to be scared.

I'm sorry you're going through this.  It is truly scary to find youself in a good place, because you know theres going to be a shoe dropping to ruin it. 

Keep us posted. 

TRU

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

It's on my cervix.  I've seen 3 doctors at Sloan, all gave GYN exams and no one felt it.  I have to apply a cream and when they first taught me how to apply it I said I feel a lump.  They all say it was just normal vaginal striations.  Well this striation is clearly bigger.  How frustrating that they're not only not feeling it, they're not listening.  I sent the doc a note that I need to come back in.  I hope this is a cyst or something basic, I'm really getting back to some level of normal and I want to keep going.

I've been a bit arrogant, I didn't even feel like there would be a shoe drop.  I felt like hey I got this.  This lump is making me mad because I was actually starting to feel okay.

Trubrit's picture
Trubrit
Posts: 4964
Joined: Jan 2013

Most people wouldn't even know what their cervix felt like.  I worked in OB/GYN and met so many woman of all ages, who had no idea what they looked like down there let alone felt like. 

Go you for being so in tune with your body. 

I'll be praying for a little, easily treated cyst or benign lump. 

TRU

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Don't be too impressed!  lol  Since my surgery, my doctor had to give me an anatomy lesson.  I have various creams that I have to put on that resolved the problems I was having and so I don't have bigger problems down the road.  She told me to pay attention to any changes.  Also my pelvic floor is now not working so I've had to learn to get over being very physically personal to a degree I can't even convey.  Sorry if I scarred Dave in any way reading this.  lol  But the physical therapy that goes with getting a pelvic floor working requires a "get over it" way of life.  It's either that or incontinence.  I already have one bag, the thought of another is cause enough to make me work extra hard and learn about my body and work to fix it.

Trubrit's picture
Trubrit
Posts: 4964
Joined: Jan 2013

For some reason I popped over to the anal forum and I thought I was in information Heaven.  I haven't encountered anyone on this forum who has or is willing to talk about vaginal stenosis, but I did over on anal. Also found that they suffered the same horrors of radiatoin that I did.  GO ANAL! No wait. Go! Anal!  Ah, that sounds better.   

I know someone who does the pelvic floor physio and I wouldn't go there for the world.  I love my husband, but I am not going that far for anything. So, a sexless marriage is the way I'm going. 

Besides, I'm sick of having personal exams. My Rad Onc calls it exam fatigue, and now doesn't push for a rectal at every apppointment. 

Trubrit's picture
Trubrit
Posts: 4964
Joined: Jan 2013

OK, I guess I can't edit my post with the smilies  .  

Neither of my little exclamations sounds right, So, lets just say, Yay for the anal forum!  Phew!  I'll get myself in trouble and banned if I don't watch my step.     

TRU

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Truly TRU, there is no way to save that post!  hahahaha  

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

The Pelvic physical therapy is to lift my uterus up so that I'm not sitting on it any more which is quite painful.  Sex is a no go in my world no matter what I do.  I have a prolapsed uterus and other issues which make it undoable.  That part I'm still trying to deal with.  I'm 47 and this happened at 43.  It's still a bit of a life sentence for me, I was in my prime when this all hit (sorry for any men reading this but hey, cards on the table with this disease,).  But I do have to get this uterus lifted for support otherwise my bladder might prolapse because right now there is nothing holding it up and then I'll have incontinence issues.  I refuse to go there!  Absolutely, postively refuse.  So physical therapy it is.  The emotional stuff is a whole different ball game.

I've also gone over to the anal cancer page.  Once in a while there is something useful on that page.  Mostly ostomy stuff.  Everyone has such different things happen with their ostomies, it's hard to find specific issues.  My doctors were fascinated by what my uterus did.  I found out they thought I was having emotional issues, not real physical pain.  That's why it took them two years to figure out that I was sitting on my uterus.   I wasn't so fascinated.  I'm a straight forward person so I found that irritating but hey, they're only human and I spend 1/2 in their offices every 6 months.  So we came up with some strategies to improve my quality of life.  Can't change it so now we're in solution mode.  Let's avoid incontinence!  Step one.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

And by the way, that's a beautiful pic!!!! You both look happy and wonderful.

Trubrit's picture
Trubrit
Posts: 4964
Joined: Jan 2013

Thank you! 

TRU

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Where is the lump? That's got to be scary! Poor you, the worrying is so hard. Helen, you're dating? Hooray! I remember you feeling like that would never happen again, that's awesome!

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

It's on my cervix.  They have me using creams and low dose estrogen and I felt it.  When they first showed me I told them a I felt a lump, no one could feel it.  Now it's clearly there.  I'm too tired to worry.  lol  I am not losing sleep over this until someone says okay lose sleep now.  I need sleep.  Yes I'm dating!  wooo hoo.  It's hard but I'm sure I'll find the right someone one day.  One guy ran for the hills, too bad I really liked him.  Another potential was okay with the ostomy but he mentioned that he once argued with his ex and didn't talk to her for two weeks.  urrrrrhhhhhh (that's the screeching sound of brakes lol).  I had a blow out on a date, that was the best.  We were having a good time walking through the park and my stomach started to really hurt and rumble and boom, bag blew out.  I didn't know what to do so I just put my coat over my middle.  I doubt that hid the smell.  Thankfully it was just a 15 minute ride home. He asked me out again but I said no.  lol  Sorry I just couldn't after that.  It's very frustrating to be in this position so young but I'm pushing myself to go on dates even if nothing comes of it for a few years.  I don't need to tell any of them until it's necessary and hopefully I'll find someone with limited physical abilities as well.  I feel like a little bit of a liar every time I go on a date but sometimes I think, hey maybe they have their own issues and they feel like liars too.  Welcome to the 40+ club.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Helen - So sorry you're going through this.  I think you're right to get to the bottom of it, keep at it until they feel what you feel.  Get a second opinion or try another doctor.  I hope it's nothing.  Happy to hear you're doing well and dating. Let us know how things go.  Traci

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hi Traci, I've been to 3 doctors now and none of them feel it, it's the weirdest thing.  To me it's as clear as day.  It's gotten bigger so they should be able to feel it this time.  I sent an email asking to make an appt for this week.  Could be a cyst. I've had scans and nothing has shown up so it's just weird and annoying.  I'm not at all anxious, more frustrated and annoyed.  I'll be really angry if this is anything but a cyst.  APRs don't have too much info on the internet so I'm not sure if this would be a normal place for a lump to show up.  I need to start an APR blog to chronicle what happens so that the info is out there.

beaumontdave's picture
beaumontdave
Posts: 1014
Joined: Aug 2013

Sorry Helen, any lump or cyst is cause for concern in this group. I had a fatty cyst on my back just below my neck. Had been there forever, then it got infected and blew up to baseball size before I finally had it drained and treated, still getting dressings 2 weeks later. Fortunately, it was far enough away from the cancer sites that I didn't worry about some kind of met showing up, yet it still worried me. Your lump would stress anyone who's been through what you have, so I hope it gets resolved quickly, and you can get back to worrying about the guys you meet....................Dave

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Thanks Dave.  I made an appt for Tuesday.  After so many hard years it was so nice that my biggest concern was what to tell people on dates to which I decided nothing was the best answer.  Need to know basis.  Thanks to my physical therapist, I've been able to deal with some of the pain through stretching and he discovered that I could get on the recumbent bike with no pain.  It feels so good to be exercising again.  I was starting to see the good side of life again.  Tuesday can't come fast enough, I went to get back on with thinking about other things.  It gets into your brain when you're sleeping and takes hold.  I woke up early today on my day off=(

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