13 weeks of uterine bleeding and an ovarian mass

[rainysweetieb]

I started what I expected to be a normal menstrual period on August 4th but it didn't stop. It's now been 13 weeks. The bleeding is mostly huge clots with very heavy bleeds which can be really frightening. It slows down for a few days then begins all over again. I am getting a lot of pain in my very lower back and top of my legs. My doctor sent me for a transvaginal ultrasound and they found a 9cm ovarian mass but didn't say anything about my uterus. I am booked to see an ob/gyn at the end of November but I am more than a little worried. My CA125 was normal, all the bloodwork shows is that I am anemic. Has anyone had or heard about these symptoms, I just can't find anything with uterine bleeding and an ovarian mass? I am 45.

[SandhyaK]

Hi Lorriane,
Sorry, I haven't been checking the internet for a while now.  I am in Canada and I am very upset that our treatment is taking too long.  Finally, I am scheduled for a surgery on December 12.  They are removing my uterus, ovaries, fallopian tubes and lymph nodes as the biopsy taken from my uterus showed stage 1 utrine cancer.  The doctor said it was in the very early stages and very treatable.  The treatment they are going to give me will depend on what is in the ovary.  I was under the impression that they had taken tissues from the ovary but apparently not.  I don't know what to think and I am very depressed.  A year ago when I went for my regular check up everything was normal and the doctor had told me that slightly heavier periods was a sign of early menopause.
  
I hope and pray that your case is not as complicated as mine.  Do let me know what is going on and I shall write to you after the surgery.  
Sandhya

[rainysweetieb]

Hi Sandy,
I know how worried you must be, I am pretty frantic even though my CA125 was normal. I've read so much about it all that my head is spinning. What I do know is that the CA125 is not very reliable as a cancer marker because lots of other things cause it to elevate and it seems even a 'normal' level isn't a sure detector that nothing is wrong either. Apparently just a plain old infection can make the numbers a bit crazy. I guess we really are at the mercy of the health professionals. You are quite lucky though that you got to see the gyn/oncologist as quickly as you did, so that's a positive. My doctor was really quite pleased that only had to wait 4 weeks for my apointment! Are you in the US? I am in Canada. Waiting and not knowing if you have some potentially life threatening illness is beyond cruel and it makes me angry that I have to wait so long. My bleeding has quietened down a bit but never gone away completely but luckily I only have to take iron replacements. When i first started trying to research this it was very hard to find any information on long term bleeding, as a symptom, with an ovarian mass, I think because a lot of women have been told it's just their age. Did your bleeding start with out much warning? I had perfectly normal periods, just a little heavy, and then in August it just started and didn't stop. You would think with menopause there would be some warning like missing periods or getting lighter bleeding or something. I have one week to go before I see the specialist but I imagine even then I'll still have some waiting for a hospital place for some kind of biopsy or procedure. It's the waiting and the not knowing, I think if I knew what has happening then I'd have something concrete to face. I have three children aged 20, 19 and 17. Let me know how things went for you, I expect by now you should know something. I'll get my sister to add you in her prayers, good luck.
Lorraine

[SandhyaK]

Hi,
I have the same problem that you have.  My periods which started on October 15, turned very heavy and I was admitted in the hospital. The clots where so huge that I had never seen anything like that before.  My periods have been heavy for over a year now, but tolerable.  I was in hospital for 4 days and they gave me 3 pints of blood as I was very anemic (82).  They discovered a 7 cm mass in the ovary and did a CA 125 test as well.  It was not normal, the count was in the 400s.  I am not bleeding now as I am on birth control pills, I do have some spotting and very little bleeding. I went to see a Gynecolgist -Oncologist last week and he did take tissues out of my uterus and ovary for biopsy.  I will know the results on Wednesday.  I am so worried, can't sleep.  I am 44, have two children 20 and 14.
I hope to hear from you.

[rainysweetieb]

thanks so much for your advice, I was feeling a little alone in all of this but since reading about the experiences of other women I feel less isolated. I just have to wait until Nov 28th now for my ob/gyn appointment and remain sane in the mean time!

[Best59]

You need to see another doctor. I had a very heavy periods, started at age 44. I was anemic too. Doctors told me, because of my age, and it is "normal". Not even offerred me the ultras., or bloodwork, sent me home. Under my sweet husband's pressures, I find the "good" doctor, who give me attention and I got in July. hystorectomy, my uteris is gone.
I still have some backtail bone pains, I will go back to check-up this month.
Good luck to you!

[Kat64]

I have been battling doctors for the last two years. I have had heavy periods, lasting for 17 days or so, and with big blood clots.  In May I had a D&C and Hysteroscopy done.  The doctor removed an endometrial polyp and was pretty sure this was the problem.  He said that we would see how your periods go for the next 3 months.  I bled for 74 days out of 119.  One day I started bleeding REALLY heavy and passed blood clots that were half the size of my fist, and something white, other than a blood clot came out.  I went to the ER, and this doctor did not even check my blood count or anything.  He gave me some pills, said that he thought I may have fibroids, and said my uterus felt enlarged.  I am to go in for a hysterctomy on Dec. 7th.  This doctor (same one that removed the polyp) says I may have endometriosis, and thinks he sees another polyp.  We won;t know till they cut me open what they may find.  I am still wondering if I had a fibroid break away and that was what I saw.  My Mom had hyst. at 38 with fibroids, and my sister at 40 with endometriosis.  Now I bleed pretty much all the time.....some light, some heavy.  I will think I stop bleeding, then will have a bowel movement and it will start back up.  I have even sneezed a couple times and started bleeding again.

[brilyn]

It sounds like your doctor needs to realize that you are truly concerned about this.  I don't have a whole lot of experience, other than what I've gone through, but I can tell you the women on this site our absolutely wonderful and full of information.

9 cm is pretty large.  Usually anything after 5 they remove.Bleeding for such a long period of time, is hard on the body.  That's more than likely the reason why your anemic.  I am as well: due to heavy long periods.  It's a good sign your Ca-125 is normal.  I ended up having a hemoragic cyst that was almost to 5 cm attached to my rt ovary.  It ended up rupturing and I bled like crazy for the first few days, it also hurts, it felt like contractions.  A transvaginal ultrasound is a good way of detecting these.  

If theres anything helpful that I can offer you is:
-Always ask for a copy of your results for yourself.
-Bring your copies to your doctors appt (because you will often hear.. I don't have your results from the other doctor yet).
-Tell your radioligist, blood tech, etc. specialist that your doc wants the results stat and they will send them asap
-Don't wait to hear from the doc, call and let him/her know your waiting
-Be aggresive with your doc, its your insurance and you have the right to use it...  If you ask to see a specialist and a doc says.. no, your fine, its nothing.. thats a huge liability. You tell them that you are demanding to see a specialist and something be done.  I hear too many horror stories of docs who have sent their patients home telling them its aches and pains and 6 mos down the road it ends up being more than that.

- Besides, no one knows there own body better than you.

Good luck and trust the women on this site, they have emotionally and mentally continued to help me through my whole ordeal.  Their a wealth of knowledge.

Brilyn