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Could use your opinions please Could use your opinions please

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Unread 09-20-2006, 11:23 AM
Could use your opinions please


I'm new here and I was hoping to get a little support.
I'm 29 yrs old.
Here's a little previous information...
Jan 05 I gave birth to my 2nd child. I had a very complicated birth (HELLP syndrome) and experienced a very fast hard delivery. Following the delivery, I had bleeding for months. I also had clotting issues (prolonged clotting times) due to the HELLP. My labs didn't go back to normal for an entire year.
10 months after delivery I had a uterine ablasion and also had a polyp removal.
Things went fine for about 5 months after the surgery and I didn't have any bleeding.
In the past 7 months I have been in the doctors 4 times with EXTREME uterine pain.
The first time they treated me as I had a uterine infection just in case.
The second time they figured that I had an ovarian cyst rupture due to fluid in my abdomen (I've had that happen MANY times before and it was not the same pain) and they just gave me vicoden and sent me home.
The 3rd time they asked me what I wanted them to do. They felt bad but figured I had an overactive uterus???
The last time they told me that I could either try BCP's or I could have my uterus taken out.
The doctor told me that she thought I either had a uterus that was producing too much of a certain hormone that the BCP would help OR I had adenymosis and she wouldn't know that until she held my uterus in her hands.
Here I am today, one month on BCP's. I've been bleeding just about the entire month. Spotting really, but every day. It ranges from bright red to brown to almost black to streaked with blood. It seems almost like it's tissue coming out. I have cramped every single day, really bad. I feel like I'm taking motrin like it's candy. I'm also bloated really bad on and off all month. 50% of the time when I urinate I have major cramping, but other times it's fine. I also have more urgency in the last 3 months or so. I also have pain during sex, but that isn't a new thing. I spot everytime I have sex. I've been told that is just my normal.

I called my doctor and spoke to her nurse about doing a possibly hysteroscopy FIRST and then a hysterectomy if it deemed necessary. I just feel like I'm not ready to remove my uterus at age 29. I know we're not going to physically have any more children, but just the idea of it when we don't even know what the problem is isn't my idea of fun. She's out for the week, so we'll see what she says.

So, I guess my questions...of course I'm concerned about cancer. But I guess anyone who has unexplained issues is, right? I have a family history of breast and ovarian and uterine cancer. (Dad's side-all three)
What do you think? I feel like she's made the assumption that it's 100% uterine related when there are a lot of things in the abdomen, you know?
Anyone had adenymosis have these same issues?
Is there anything that stands out with my symptoms that I should bring up?
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Unread 09-20-2006, 02:30 PM
Could use your opinions please

I too have had an ablation (near five months ago)
Prior to the ablation I knew I had minor endometriosis.
After the ablation my doctor suggested that from the looks of the uterus, its size, my symptoms etc... that I have adeno as well.
Since the ablation, my pain symptoms have spiked through the roof - unbelievable how much pain (today I feel as if I am going to throw up from it) and I too have the black discharge stuff.
My hyst is booked in just under 2 weeks (Oct 3).
From the support board I was on for the Ablation, it seems that women who actually have adeno and undergo an ablation, the pain can become worse and symptoms more severe... for me, this is more than true! Month to month only gets worse and although I had BAD painful cramping, clots, gushing, etc... before the operation, the pain was not as bad as it has been since.
If it is endo - the only thing you can do is a hyst....
Many women on this board having hysts have adeno or endo. I am not too sure how many have had ablations though.
Unread 09-20-2006, 02:30 PM
Could use your opinions please

I have adenomyosis. I have pain and some abnormal bleeding and crazy bladder problems also. I do not bleed like you though. My old gyn told me the best way to really know what is going on in there is to have a laparoscopy. Then you know for sure. As someone who has delt with female problems for along time it can really put you mind at ease. I had one a few years ago and it was pretty easy as far as surgery goes. I am young also, 33 and I am having everything out the right ovary might stay if it looks good. I have had my children and my husband has had a V but it is still upsetting to have it all removed. Very final! My opinion is you need to get to the bottom of what is going on. Be your own advocate. Make your doc really understand your concerns about cancer. Don't let them tell you that you are to young for that. I am sorry that you or any of us have to go through all these female problems.
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Unread 09-20-2006, 02:49 PM
Could use your opinions please

I'm so sorry you are going thru this. I agree with the other Sisters that you need to get some more info. I had a lap "Lookaround" and I even had some pictures to take home with me. I think you really need to push your dr. about getting 1. Now the dr you have now may not do that, but that doesn't mean you can't be referred to someone who can. You and the dr will then see Everything, inside and out. You will be able to see the adeno, any problems with ovaries etc. I really think that this is your next step. Please see if you can have that done. It is a very easy procedure.
I wish you the best...
Unread 09-20-2006, 02:54 PM
Could use your opinions please

I am sorry I can't be of more help, but I would ask your doc for a transvaginal ultrasound and other tests to look up in there. It does sound uterine related. The transvaginal ultrasound would show the uterus and ovaries..etc...maybe that would show them more??

I wish you the best and please post what they found out.

Unread 09-20-2006, 02:56 PM
Could use your opinions please

I have been diagnosed with adenomyosis and have tried the BCP's twice. Both times I bled nonstop for months.
That's all I have to add. I've been checked for lots of things and have yet to find relief.
Best of luck to you, and insist on more tests!
Unread 09-20-2006, 04:05 PM
Could use your opinions please

I know I already replied to you but I thought of something MAJOR on the way home.
BEFORE my doctor did the Ablation, she had me fill out family history re cancer and she did a biopsy before the surgery (in office procedure - a wee bit ouchy)
Anyway the reason she did all this is because after an ablation it is VERY DIFFICULT to detect uterine cancer. The 3rd degree burns on the inside of the uterus cover it up making it next to impossible sometimes to get an accurate test result.
Did your doc explain all this to you BEFORE the ablation?
If my family history for these types of cancer was poor, or anything out of the ordinary showed up on my biopsy, my doctor would not do the ablation. Of course everything was find and I had it done. And prior to having it done I had, had a diagnostic laparoscopy done.
Have you even had that? Where they put you under and go in through small incisions to look around?

Anyway - what I am getting at is this - you have a family history of cancer - YES.
You have had an ablation making it difficult to detect cancer in the future - YES. (still can't figure out how you got that ablation with your history)
Your doctor has given you the opt of a hyst or BCP's (which slightly increase your risk of cancer)
Your doctor is suspect to adenomyosis and it's only fix is a hyst....

Ok, so there in black and white are your facts.
I realize you are only 29. (It was first suggested to me to have a hyst when I was just 30 - fought it all the way - no way was I going to do that. Now I am 38 and wonder why the heck I was so stuborn because I have done nothing but suffer for the past 8 years, undergone several surgeries and things have just gotten worse and worse - to the point I no longer have a choice).

Look at your facts...
Decide from there.

PS - I am no doctor and you should take your doctors advice first and foremost but I wanted you to know that you have ALL the same symptoms as I - even the hurting when you urinate (but that has only been since the ablation)

Good luck with your decision and please, do let us know what you decide.
Unread 09-20-2006, 04:11 PM
Could use your opinions please

First, I am not familiar with your type of situation, but I would have to say it is time for a second opinion. Get a referral from a trusted friend or your insurance for a new doctor. It can't hurt at this point.

Second, you mention a family history all on your dad's side. Do these cancers run across a generation (grandmother, her sister, her cousin, for instance? Or your cousins and/or siblings have had early cancer? This is a much different warning signal to gyneos that someone who says their grandmother and an aunt on one side of the family have had these cancers. Sometimes people don't know to designate it and doctor is not aware). If so, you might need to explain that to your doctor instead of just indicating a history. When female endo/ovarian cancer occurs, there is a possibility, when it runs across a generation, that you have an inherited condition and therefore, much more diligent exams and care must be taken.

With your family history and condition, in recent months, have you had: a CA-125 blood test? An endometrial biopsy? A pelvic ultrasound?

Think about these questions, and schedule an appointment with another gynecologist or go back to your gynecologist and ask her for these tests if they haven't been done. At least it will rule out some of your fears, and at most, it may identify an additional problem that is being masked by your current diagnosis.

I'm not a medical person. This is just would I would do if I were in your shoes.
Unread 09-20-2006, 04:34 PM
Could use your opinions please

I'm with W2W on this. More opinions and tests, tests, tests. Ultrasound, hysteroscopy, D&C.

Good luck. I hope you find some answers, and relief, soon.
Unread 09-20-2006, 10:29 PM
Could use your opinions please

Prior to my hyst, I had a lap, hysteroscopy, and D&C. This allowed my dr to give me an exact diagnoses and allowed him to see exactly what was going on. Having these procedures done first allowed us to make the best decision for me.

I can't stress enough how important it is to have more than one medical opinion. Do your research. Know your options. Find a doctor who is willing to work with you to find the right solution for your situation.

It might be a good idea to sit down and talk to your doctor once she is back. Stress how you feel physically and emotionally. Ask how the hyst will help you, but also what the pros and cons are with a hyst. Discuss your personal medical history and your family medical history. Ask for diagnostic testing.

Then get another medical opinion. Go over all the same information and find out if a second doctor suggests the same options.

Many best wishes to you as you work at finding a solution for your medical needs that is right for you!

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