Has Anyone Experienced This Much Bleeding?

Thanks Bonnie, it really felt sort of good telling the Dr. what I wanted!

I am so glad I had my dh with me. He says I am confused & only need to know the results of the CA125 to see if I can wait until after the retreat for the procedures.

What would I do without him!?
Blessings,
Pam

Pam,

Have you discovered the Options and Alternative forum?
You might get some ideas over there.

https://www.hystersisters.com/vb2/forumdisplay.php?f=4

Did you mention to the doctor today about your family's cancer connection? You mentioned once that you had a history of Uterine Cancer. What was involved with that? How was that taken care of?

I hope your ca-125 comes back normal and that you get to the bottom of this problem soon. I know you are looking forward to your scrapbooking retreat, but your health needs to come first, IMHO.

s and good luck to you. I know how frustrating this must be for you!

Did your doctor order a blood count? If not, I would suggest getting one. I had one in the ER in November and was so very anemic that they wouldn't let me leave. I ended up spending the night in the hospital and getting a blood transufusion. My period had actually stopped 2 weeks prior to my blood test, so if you are still bleeding heavily and since October, I can only imagine what your numberst might be. I had gone into the ER for an unrelated reason (severe abdominal pain which turned out to be just a UTI)--I had NO idea that I was severely anemic. No light headedness, etc. If I hadn't had the abdominal pain, I might have gone on for months in that condition which would have been very bad.

Oops. . .I see now that you did have a blood test today. I am just figuring out these boards. I must have skipped a page. Best wishes!

The adn word was probably adenomyosis, you can find information about that here, and elsewhere on the internet. I have that as well. They may need to put a rush on the pap results, but the actual reading usually takes less than 30 minutes unless you have something very unusual. What takes so long getting it back is getting to the front of the line to be read. Good luck!

Hi Pam
I am sorry you are having so many problems. It is good that you are getting things checked out. I am not real sure what your Dr. is thinking your problem might be.

One thing I want to caution you on is putting a lot of decisions on the CA 125 test. Here is a link regarding it: http://www.mayoclinic.com/health/ca-...66/UPDATEAPP=0 It really is not reliable in diagnosing cancer as there can be false positives especially in premenopausal women. It is only one too used in diagnosing cancer.

I have read in some of your other posts regarding a thyroid condition. You have had long term bleeding which concerns me to as far as your hemoglobin. I am wondering if a consult with an endocrinologist might be in order for you.

If you were me, I think I would forget the retreat and get my medical problems in order. Have the surgery if your doctor thinks you should go ahead with it this week, get healed up, get all of your hormones (thyroid as well as estrogen, progesterone and testosterone) and blood counts where they should be. Then you will feel like going to retreats. I know I would not want to go to a retreat if I have been dealing with this much bleeding.

s
Jane

A few things you have mentioned remind me of my story so since you are asking if anyone has had this much bleeding, yes I have. Let me share a bit of what happened for me.

My mother had her hysterectomy young for completely unexpected reasons unrelated to cancer. However, her mother had had a hysterectomy partially to prevent cancer as her own mother had lost her battle with female cancer. The specific type of cancer was never shared with us. My father's mother had also lost her battle with female cancer though she did do chemotherapy and again I was given no specifics as to which cancer specifically.

In September of 1998, following a move to another state, I started what would be my final period -- the bleeding was basically non-stop until February of 2001, a few months after my hysterectomy. I had what it sounds you are having -- bleed heavy one day or several days, then light for a few days, then heavy for maybe a day or two, skip a day, heavy again the next day, on and on, no rhyme or reason to the bleeding.

The bleeding was not accompanied by any pain or cramps other than my usual lower back ache and some right sided "sensataion."

As you, I had taken numerous birth control pills and they were changed several times to no avail. When I finally was able to have another pap with the GYN I had been referred to in 2000, it was abormal/atypical as the last couple had been.

Based on my unique family history, my abnormal/atypical paps, and the would not stop bleeding issue, I had a colposcopy on a day when I was not bleeding profusely. Thankfully the colposcopy results were clear but with yet another change in birth control pills I still had not stopped bleeding for more than a day or two here or there.

Unbelievably my hemoglobin was okay as was all other blood work.

Next for me was a D&C, laparoscopy, and hysterecoscopy. The diagnoses turned out to be stage IV endometriosis.

I mention this for a couple reasons. Endometriosis can cause an elevated CA-125. It can also cause abnormal paps. So try not to panic regardless of the results you may receive over the next few days. You might actually want to read up on both Endometriosis and Adenomyosis before your next appointment.

If endometriosis turns out to be the problem, it is not going to be detected during a biopsy, ultrasound, pap, etc. You would need to have a laparoscopy. Has your doctor mentioned a laparoscopy at all? The laparoscopy can give your doctor an idea of what could be going on outside the uterus and contributing to the problem.

As mentioned, adenomyosis is probably what your doctor is looking for inside your uterus but it is iffy as to whether any of the above would detect adenomyosis -- it is only 100% diagnosed after pathology following a hysterectomy.

You mention your doctor is looking for endo -- would that be the endometriosis or endometrial cancer? Have you had any GYN tests in the past that give a clue as to what might be going on?

I do think it is wise to want to know what is going on for sure before scheduling a hysterectomy, especially since a hysterectomy is not a cure for all GYN issues.

If any of your tests do suggest a possiblity of any type of cancer, a second opinion with a GYN/oncologist would be wise.

I do wish you the best and hope you have some answers soon. While I think a weekend away sounds really nice, I think I would talk to the doctor before finalizing your weekend plans.

There are so many ladies here on the site to support you for whatever the future holds. Let us know what you find out and we will do our best to offer any information we can to help! s

	Quote:
Originally Posted by Weiser If endometriosis turns out to be the problem, it is not going to be detected during a biopsy, ultrasound, pap, etc. You would need to have a laparoscopy. Has your doctor mentioned a laparoscopy at all? The laparoscopy can give your doctor an idea of what could be going on outside the uterus and contributing to the problem. You mention your doctor is looking for endo -- would that be the endometriosis or endometrial cancer? Have you had any GYN tests in the past that give a clue as to what might be going on?

Weiser, yes our symptoms do seem to be similar.

My Dr. & I talked briefly about a laparascopy but decided to hold off until we know more. I am having a biopsy, D & C & Ablation. The reason to do ahead and do the ablation was just in case this is all hormoanl, then I will have already had the ablation & hopefully it will work in controlling the bleeding.

With the biospy she will look for cancer amoung other things. Both ultrasounds showed no masses, spots & healthy ovaries so I feel pretty confident that if it were cancer, it's most likely endo cancer. But, it could very well be endometriosis as well. I think my Dr. wants to rule out issues in the uterus first before goign in to do a laparascopy which I feel comfartable about. I have been told by many on this board that if cancer is suspected your regular gyn shoudl not be doing the laparascopy & my Dr. agreed with that.

I think what we are doing is taking this one step at a time. No, if my CA125 is elevated (I know it can be a false positive) then I will go immediately to a gyn/onc.

I have never had any gyn issues with the excpetion of ovarian cysts in the fall of 2006......the disolved on their own.

AS far as the retreat goes, if the CA125 is normal, then I am not sure what difference it would make if Ihad the procedures done on Thursday or the following Monday. If the PAP (I doubt I'll know on this one soon) or the CA125 have negative results then I would be shocked to get into a gyn/onc right away anyway. I don't know how that works but I would think they would be pretty busy & appts. would be hard to come by.

Thank you ALL so much for your support & sharing your knowledge! I REALLY appreciate it!
Pam

[quote=Hoosier67]Did your doctor order a blood count?/QUOTE]

Yes, hoping to know those results today. I do feel so much better & haven't had heavy bleeding since Sunday night.

Thanks!
Pam

	Quote:
Originally Posted by k9equinewhine Pam, Have you discovered the Options and Alternative forum? You might get some ideas over there. https://www.hystersisters.com/vb2/forumdisplay.php?f=4 Did you mention to the doctor today about your family's cancer connection? You mentioned once that you had a history of Uterine Cancer. What was involved with that? How was that taken care of?

Yes, I found that forum & I probably need to move on over there. I don't really know if I have cancer, just concerned about it.

I have not had uterine cancer, that's just one of the things she will be looking for.

Thanks!
Pam