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A few questions

leeangelau
Posts: 13
Joined: Nov 2017

Hi Everyone. 

I apologise for way too much info I am about to blurt out. Sorry Undecided

I'm 44 and have had extremely painful and relentless periods for the last couple of years.  I've always had painful periods since I had my last child in 2003 but they got worse since about 2011.The last 6 months though I bleed like a tap has been left on. I cannot leave the house for more than 30/40 minutes and thats with Super everything being used for protection.
I bleed for about 25 days out of 30 and in between that I have this horrid blood tinged discharge continously. I've tried everything that the Dr here has suggested other than an Abalation(think thats what it was called) but my Urologist who I see for other issues was against me having that done as it could of caused me more issues with another health problem. 

I had an Internal Ultrasound done in 2014 and some fibroids were there, mainly small ones but nothing the Dr thought would be causing these exaggerated issues. The Endometrium thickness was a bit thicker then it should be but again the Dr said I was fine.So I've basically just put up with it all the last few years until now. I cant live with the pain anymore and last month I just bled every day, literally poured out of me night and day. No break. Went to Dr's and she ordered another Internal Ultrasound to see how the Fibroids were going. I'm push push pushing my Dr all the time to help me do anything with this problem. I live in a very small town and we dont have a lot of Dr's to pick from and I am about 7 hours from the City so its been fustrating.

The new Ultrasound shows that the Fibroids have all but disappeared but my Uterus is now extremely enlarged, twice its normal size and my Endometrium thickness is now 3.29cms(32.9mm). I dont understand really what this means other than a possible reason for all my pain. 

My Dr rang me that afternoon and said that I need to go to see a Specialist straight away and will more than likely need a hysteroscropy but she wouldnt discuss anything more with me over the phone. Now I get to think about this all weekend and worry about things and then I dont go back into see her till end of next week as I am sorting Nan out at the Nursing home.

I came here just searching online for information about my results(the larger uterus, endo lining etc) and ended up on this section. I saw Uterine Cancer as thats what my Nans sister had for a couple of years but sadly passed last year so I thought I would do a bit of reading. 

I know no advice is as good as my Drs, Specialists etc, but I just needed to vent. I dont have anyone here I can talk to. It just feels so private.
My main questions were what is the normal size of womens endometrium lining and if its larger than normal what does this mean?
Any thoughts would be great. 

Thanks so much.

 

leeangelau
Posts: 13
Joined: Nov 2017

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leeangelau
Posts: 13
Joined: Nov 2017

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

That is atrocious that your doctors have let this go on so long!

I am in the process of having post menopausal bleeding (sporadic) looked into and my gyn told me that under 5 mm is good, over 5 mm, one needs a biopsy. (for some reason, though, he's skipping the u/s though he initially ordered one and wants to go straight to hysteroscopy, biopsy and D&C)

I totally understand needing to talk and having nobody to talk about something like this with. I hope you get the tests etc that you need soon. 

leeangelau
Posts: 13
Joined: Nov 2017

Hey HorseLvr. 
I finally get a minute to reply and I look at the time and its 3.30am. Blah. Story of my life, never sleep. 
It was good to read that you are now going to have an Ultrasound. Fingers crossed that will send you on the path that you need to go, and quickly if need be.
I havent talked to anyone here where I live(apart from Husband) because I just need to deal with this myself for now. I have so many other health issues that I feel like people will just roll their eyes and say ok,another illness to add to the list. I really tend to keep to myself about my health because I've found that while people will say you can talk to them about anything, anytime etc, well I've had a few bad experiences with them breaking my trust so yer, bit hesistant there.
I have to go back into see my Dr next week. This waiting game is a so hard. I wish she would just talk to me over the phone instead of making me wait literally another week to see her. She knows I can handle medical hard facts but nope, makes me wait and fret. I have to learn patience. This last couple of weeks have truely been the longest couple of weeks ever. 
I've joined a couple of Facebook groups and got some good info there and made some friends as well. Thank god for the Internet right?
Hopefully will catch up soon with you x

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I hope everything turns out just fine but what you are saying somewhat mimics what I experienced.  

I was 52 last year when I started having all this crazy bleeding (like you described...super tampons soaked in less than an hour and huge clots). Lots of pain. Bleeding when I was on the pill and should not be bleeding. Pre-menopausal but not fully into menopause.

My gyno and Ithought it was fibroids but the US didn't show any issue with them...they ran a CA125 on me (ask your doc to run this blood test) and my levels were very high so I had a CT (lookeed normal other than enlarged uterus). Had a hysteroscopy and the biopsies she took from that came back as cancer.

Have the hysteroscopy as soon as you are able and in the meantime see if you can also have a CA125 run. It's not foolproof but might indicate if there is more to look for.

Good luck to you...

leeangelau
Posts: 13
Joined: Nov 2017

Hi. 
I absolutely will do whatever it takes to make sure this is dealt with. I will definately ask her about the CA125. She wasnt the Dr that I dealt with back in 99 when I had Lymphoma but she hasnt even talked to me about checking things out to make sure I am still ok. She knows my health history but it really seems to overwhelm her. 
Thank you for the wishes of good luck x

bluesmama
Posts: 124
Joined: Aug 2014

In hindsight, I truly believe I wasn't taken seriously until I switched gyno's. My new one sent me in for an ultrasound and they did find a very thick uterus the size of a 2 month pregnancy. I had massive thickness and I was bleeding so heavily with huge clots during my periods that I had to use a super tampon PLUS a super pad and that still wasn't enough. And I was always spotting. They also saw a pea-sized growth which they felt was cancer. I got a biopsy immediately. It was like a thin straw and not the better procedure that you're getting. The problem with the procedure they used with me is they go in blind basically but I guess it gets the job done for my case. The biopsy came back positive so I was scheduled for surgery right away. I had davinci robotics and highly recommend it if it's an option for you. Turns out the pea sized growth was a polyp that was sitting low over my cervix. It prevented blood from escaping and allowed the blood to clot. So the growth wasn't the cancer but the thickened endometrium was. I was stage 1A grade 1. They further found complex hyperplasia with atypia. So I was at risk for endometrial cancer for awhile without a proper diagnosis.

I know you're scared but the thickened wall could also be a benign form of hyperplasia which is more likely than what I had. You're young and I was young when I was diagnosed. It's very rare for someone in their 40's to have endometrial cancer. So you have that going for you but I also think because you're young, doctors tend to lean towards benign conditions first and blow you off. That wasn't the case with me and I'm glad I switched gyno's. And although I did end up with a recurrence 2 years later (I'll save that story because it was a unique circumstance), I'm so glad my new gyno found the problem.

MeinMississippi
Posts: 39
Joined: Aug 2017

Your story sounds a lot like mine. I had the same stage and grade of cancer, I had a uterine thickness of a 2 month pregnancy as well as complex hyperplasia. I'm 46 so I'm relatively young for this type of cancer as well. I'm only 3 months out from having had my hysterectomy and told I was cured.  I now have a mass in my bladder that I'm having removed Thursday. I'm nervous about this. I thought I was past this, but I'll do what needs to be done. 

leeangelau
Posts: 13
Joined: Nov 2017

Thank you so much for your comment.We all seem to have similiar stories. 
I've put all this worry into the back of my head and decided that I cant do anything about anything until I get the 2nd lot of results back. And even then well theres just somethings we have to do right, to make sure we get to live healthy lives and be there for our kids and family. I keep telling my husband this and I hope it helps him as well. Even though the waiting is killing us both there isnt anything we can do about it so we just have to be patient. 
I would love to hear your story, about the reccurance and how you are doing now one day when you have the time. x

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

My journey with Endometrial or Uterine Cancer started last year October 2016 at 41 years old.


MY SYMPTOMS:

I noticed the changes in my menstrual cycle probably 2 years ago or so. The symptoms were prolonged and heavy bleeding for 3 weeks I only had 1 week off to rest and my menstruation or bleeding starts again. Light hot flashing at night or even during day time, and my period will start and end with watery, pinkish discharge.... none of which made me think anything was wrong. Though I recall too that I always experience menstrual cramp or dysmenorrhea.  I never consulted a doctor, I thought it was just normal to have cramps. I also feel bloated and gassy most of the time and back pain too.  I feel tired all the time, just woke up and after few hours I always feel that I need to sleep again.  When I bleed, it's like peeing, I need to change my pads almost every 5 or 10 mins, a lot of blood clots too.

 

April 2016 – I had my annual check-up and I mentioned to my doctor that I have unusual bleeding.  She recommended that I need to get a “Transvaginal Ultrasound” which I delayed until October (yes, I know my bad).

September 2016 – My bleeding worsens

October 05 2016 – I had Transvaginal Ultrasound

October 06 2016 – I had a call from my provider and I was advised to see a Gynecologist A.S.A.P.  The nurse said that they saw abnormalities from the Ultrasound.

October 11 2016 -  I had Gynecology visit and took a biopsy sample.  Gynecologist told my she doesn’t like what she see from the sample taken.

October 14 2016 – I received a call and was told that I have Endometrial Cancer – Grade 3 (it means my cancer is very aggressive) and again I was advised to see an Oncologist A.S.A.P.

October 21 2016 – I met my Oncologist and he explains everything I need to know and after the visit I had CT Scan (to check if the cancer has not metastasize).  After 2 hours I received a call from my Oncologist and told me the good news that the result was negative, and I can proceed to my surgery.

October 28 2016 -  I had “Hysterectomy – Bilateral Salpingo-oophorectomy” by Laparoscopic Surgery.  I stayed overnight and was discharged the next day.

 

RECOVERY was great.  I was given all meds for pain - I avoided taking Hydrocodone regularly instead I take Tylenol in between because Hydrocodone makes you Constipated and after the surgery you don’t want to get terrible constipation.  (NOTE: I took Magnesium Citrate a day before the surgery to clean my gut.  A friend of mine who had Hysterectomy told me it is better to have a clean gut before surgery) and it really helps.   Also, I was given a stool softener, Senna-Lax and Osmotic Laxative which never worked for me, I took Prune juice and I did the great for me.  As we all know it is very important to pass “GAS” and “Poop” after the surgery.  Sorry it’s TMI but I have to share it =).  It also help that you drink a lot of water, yes I’m an advocate of hydrating yourself.

I am so thankful my recovery went well…within 2 weeks I don’t need any pain meds anymore.

November 05, 2016 -  the dreaded news that everyone don’t want to hear….. the cancer stage.

I was diagnosed with Grade 3 FIGO stage (pT3a N1 and IIIC1) – Endometroid Carcinoma

After recovering from the surgery, I went through genetic testing which determined if I have Lynch Syndrome – a mutation in a gene that causes colon, ovarian, and endometrial cancer. Praise God it came out “Negative”.

December 20, 2016 – I started my 1st Chemotherapy treatment. The unimaginable pain started on the 3rd day after treatment.  It was the most painful experience I ever had.  My whole body is in pain, joints were aching.  It lasted for 2 days.  During those days I couldn’t eat.  I tried my best to at least eat a piece of toast with butter, made some smoothies with chocolate drink (I mixed different berries or fruits).  Probably after 6 or 7th day, I’m back to normal appetite.  Oh boy I am soooo hungry.  I wake up in the middle of the night and eat!!!! My hair starts to fall on 2nd week.  I read that it’s better to get rid of hair or entirely shave it. And I DID!  Never regret it.  I wear bald, NO WIG!  Yes I am proud to be bald. (NOTE: I drink prune juice too before and after treatment because chemo drugs make you constipated too). I hardly took my nausea pills.  I am very thankful that I don’t have any other side effects.

 

1st treatment – body pain and joint aching 100%

2nd treatment - body pain and joint aching 75%

3rd treatment - body pain and joint aching 40%

4th treatment - body pain and joint aching – NONE 

My treatment was every 3 weeks. My blood platelets started to go down on my 3rd treatment.  My 4th treatment was delayed for a week so as my 5th and 6th.

My last treatment ended up on April 2017.  My doctor asks me if I want blood transfusion because my blood platelets was so low.  I said I still feel fine and If I needed it I will tell him.

I recovered well with my Chemotherapy treatment.  I never limit my diet.  I eat anything I wanted to give my body enough strength to go through the treatment.  BTW my hair never stops growing throughout the treatment, but I need to shave it everyday otherwise it will fall off then grow again.  So, I decided to start growing my hair on June 2017.

June 2017 – I had 28 rounds of Radiation treatment.  Side effect was diarrhea.

3 weeks after the last treatment, I’m back to my normal like with minimal side effects like my joints are weak and occasional diarrhea (it depends what I eat -  so I avoided foods that triggers diarrhea).

September 2017 – My CT Scan and CA125(blood test) came out clean. Glory to God!

I feel fantastic as I write my experience today (November 28, 2017).  My journey was never easy but my positive attitude and faith in God is the reason I’m alive. 

If you are diagnosed of any cancer.  Don’t panic or be afraid.  Surround yourself with great friends and family.  Educated yourself through the internet, not to make you feel worst but read some uplifting stories. 

Life is great.  Everything happens for a reason.  There’s always great purpose.

Lesson Learned:  I don’t like going to the doctor.  But of course, after I was diagnosed, I advocate for endometrial cancer awareness and genetic testing by sharing my story at my Facebook page.  I am thankful to help some of my friends and given them enough courage to go to the doctor.  I also shared a video I got from YouTube about Endometrial Cancer.  The doctor said IF you notice some changes in your menstrual cycle, don’t wait to long to have it check.

 

 

leeangelau
Posts: 13
Joined: Nov 2017

Wow Anne, your symptoms are all but identical to mine. When you say light hot flashing do you mean your face feels like its on fire? My husband can touch my face or arms and it feels like I am on fire. I also have a low grade temperature though but never a fever. I've been having that on and off for a while now. As for the bleeding I told my Dr that it's like a tap is turned on for 3 weeks every month and there isnt anything I can do to stop it. Even if I lay dead still the slightest movement makes me gush Cry The heavy blood tinged discharge is realtively new though, about the last 6 months I've gotten this. Another symptom I have(not sure if you or other girls had it) was I would go to the toilet and my undies and pants would be soaked. Not urine but just water. No smell at all. Odd and embarassing. It was kinda like I'd run a marathon and had a sweaty groin but I hadnt in fact run at all. Would just happen as I was sitting inbetween periods. 
I put off the Trans-Vaginal Ultrasound as well but mostly because I couldnt get a long enough break in bleeding and I was too embarassed to go. Even when I went the other week the mess I made everywhere had me in tears. The Sonographer was so nice about it though.
The abnormalities were very obvious on my scan and she even showed me where the growth was. I dont get how they read those things but I guess thats why they go to University. It sure is a talent. 
I also have a very bad bladder disease and there are very clearly new issues going on there as well but my Urologist is dealing with that. I have surgery on my bladder every 5/6 months there CryFeel like I am already seeing so many Dr's and Specialists. I'm booked in for Bladder surgery(again, my 29th surgery since 2009) on the 18th December so I dont know how I am going to fit everything else in. The Specialists literally all dissapear in December here for their Christmas's so most places are closed down till after the New Year. I feel like I am just in limbo here. 
I know its just a waiting game though. Test than wait, more tests then wait.
Thank you for sharing with me your story. x

Anne0803's picture
Anne0803
Posts: 15
Joined: Nov 2017

I hear you!  I timed my Transvaginal Ultrasound last day of my period... technically the 3rd week.  Yes I always wear pajamas because it always leaked.  

I am sorry that you are dealing with a bladder disease, I hope and pray for your healing and recovery after surgery.

I also liquid discharged before and after my menstruation, I though I had incontinence.  A friend of my told my that I might dealing with Fibroids so I focused on that one, which other symptoms matches.  

Please do try to make it happen for your Transvaginal Ultrasound before your bladder surgery.  I am surprise that your doctor is not looking on that one for consideration..

You are most welcome.  <3

Since I was diagnosed I want to be an Advocate for awareness regarding Uterine cancer.

I forgot to tell you about the hot flashes.  It feels like I have high fever, my neck on fire... It always happens during the night or midnight.  I need to keep our bedroom at least 62 farenheit... or cooler than that =)

Cheers,

leeangelau
Posts: 13
Joined: Nov 2017

I had the trans vaginal u/s  over a week ago now and the Endometrial Biopsy (not sure what it was called) I'm now up to the D&C and Hysteroscopy results now. Waiting for them Cry
There is no cure for my bladder disease either. I really wish all these things didnt happen in our lady areas. Why not my big toe or something? Argh. 
Thank you again for commenting.Innocent

leeangelau
Posts: 13
Joined: Nov 2017

Hi Everyone. 

So this last week has been a nightmare. My nan died on Thursday and I was her carer for a long long time. I had not long buried my dad then Nan had a heart attack so its really been just one thing after another. 

Today I got my date for a Hysterectomy. I am being told whats going to happen on the 5th January 2018 and they will give me the date then(edited) I have a few more tests before I do that and with Xmas so close and everything shut here for the holiday its hard to get things booked in. My Dr here is a joke. Will not look me in the eye and talk to me about all this. You can see she is embarassed sending me off to the Specialist in such a mess. There is massive paper trail from 2014 of all my problems getting so much worse. Even the 2014 Trans Ultra Sound indicated there was thickening of Endo lining and my Right Ovary has dissapeared but I never knew this until now. 

Will drop by over time and see how everyone is doing and let you know where I am up to with everything. 

Stay safe over Xmas and have a great day xxx

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I am so sorry about your Nan...never fun to lose a loved one at holiday time...

Glad you have a date for the hysterectomy...for me I felt much "safer" once I had the surgery...and hopefully it will yield some answers...

sorry you have to go through the holidays with this hanging over your head...

leeangelau
Posts: 13
Joined: Nov 2017

Thank you so much. I just buried my dad and now my Nan. Its a bit too much :( but I have 2 boys to be strong for. Xmas is very different this year, no feels there but I will make it as good as I can for them. 
I definately have a lot of questions and noone is really giving me answers but from what I've read really nothing can be said till after the biopsy comes back from the hysterectomy? How are you doing now?
I hope you have a good Xmas as well x

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Oh girl I feel for you....losing your Dad and your Nan and now having to wait...

As hard as it is to do try and focus on the holidays and enjoy them and know that the new year will start with your surgery and hopefully some answers for you...

I'm doing good...waiting for my PET scan on Jan 11 to see if I am "dancing with NED" (no evidence of disease). My radiology oncologist feels very positive. I'm Stage 4b so this has been some work to get me here. Last Christmas I had my first chemo on Dec 23 so the holiday was a blur but my kids are 19 and 24 so they just wanted mom's cooking and $ for Xmas...

hang in there...come back here if you need reassurance...

Merry Christmas!

xoxo

leeangelau
Posts: 13
Joined: Nov 2017

Yes, loosing them has been hard. So many firsts already. Hard on my boys. They are 17 and 14. My nans been my Mum my entire life :( Sad how the circle of life goes. 
Sending you many warm wishes for Christmas. I am hoping you are celebrating this year in a much happier way. Chemo 2 days before Christmas must of been hard. 
Oh I get that kids love Mums cooking. Mine have begged me for the traditional Roast this year. Havent had it the last few years, just cold meats and salad as its so hot and there is always so many to cook for. This year though our day will be small so they boys will get their Roast pork and crackle. 
Everything crossed for you that your PET scan returns NED results. I get the whole Dancing with NED. I had Hodgkins Lymphoma back in 99 and those words NED are gold. Hard work though. 
xxx

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

It will be a hard Christmas...my first Christmas without my mom was so awful I didn't put up a tree and we took the kids to Disney World because I couldn't face the holiday at home...

It was 3 more years before I put up a tree again. Stockings and some trimmings but the tree I just couldn't do.

Give the boys their roast...I'm doing a prime rib and yorkshire pudding (so British for a Texas girl!) and we will have our traditional tamales on Christmas Eve...last year was so hard so this year I want to celebrate...

I like to say that NED and I are in the ballroom and I am just waiting for him to ask me to dance...my CA125 results came in yesterday and I am at a 13 which is down from the 24 it was in September when I still had cancer in my lymph glands in my neck. I take it as a positive sign.

As for you---it's hard to celebrate when we are grieving and you have this to worry about as well...I find great comfort in doing things my mom would have done (like the cooking), putting ornaments on my tree from special trips we took, and drinking my dad's favorite wine. Maybe incorporate some of that into your celebration as a way to find comfort...I usually wake up Christmas morning (my kids sleep late and I'm divorced) and have some quiet time to reflect on the true meaning of the day and remembering Christmas when I was a child. I sip my coffee and "talk" to my mom and dad in my head and I spend some time in prayer to thank God for his many blessings. This holiday will be different for you but you will find a new normal..

xoxo

Anice

Mwikoff46
Posts: 40
Joined: Nov 2017

Leeangelau just have a question...sorry to chime in but I'm one of the ones waiting and waiting to get results and diagnosis...when you say right ovary disappeared I'm curious on my 2nd transvaginal ultrasound the said right ovary undetected..and that's where all my pain is horrible pain from pelvic to back up my side ...my only thing I don't have is bleeding because years ago I had an ablation and period never returned . but horrible hot flashes at night and just feel sick..had 2 CT abdominal pelvis and 2 transvaginal in last 2 months all they see is a couple cyst on left ovary and fibroids. Just did ca125 bloodwork waiting results . I don't know where to turn I'm physically in pain and don't know where to turn. Pain so bad on right side . 

leeangelau
Posts: 13
Joined: Nov 2017

I have no idea yet as to why it has dissapeared. I asked and they said sometimes they just hide. Mine has hidden on all occasions though so I am starting to wonder if I actually have one there. I do get horrible pain in that exact location though at the start of each month. I just always have so many things going on, questions to ask etc that this seems to of been forgotten. I have pouring out bleeding, sorry for TMI but they are the only words I can use to explain it. I cannot go anywhere for most of the time I am like that. I usually bleed 3 weeks out of 4 :( My biopsy, D&C showed Cancer and I have a small growth there so my situation might be a bit different. I actually never had the CA125, she felt I didnt need it based on pathology results. I get terrible hot flashes as well, have done for a couple of years and I feel like my face is burning up and I get the sick feeling.
I originally had Fibroids and was led to believe my issues were because of them but my last TV Ultrasound showed the fibroids picked up on my scan in 2014 were gone, completely. I've had a lot of mucking about with all this. PLEASE find yourself a really decent Dr that makes sure you get the best care possible.  Mine has been a joke. Good luck with it all.

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