dVH/RALH Pathology In - I NEED a Shoulder

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Originally Posted by AliStacey I'm new, it's only been 11 says, I'm exhausted but can't sleep, heartbroken but can't cry & ashamed nothing was wrong when I was in agony.

Something was medically wrong because it is not normal to be in that kind of pain. This doesn't change just because the doctors can't or won't put a label (diagnosis) on it. When I had my periods, the pain was horrible, although not as bad as what you describe. My mom didn't believe me and never took me to a gyn.... Decades later, I found out my pain wasn't normal when I had my colposcopy, but the doc never told me why I had had the pain.

I think the best way to address the question of what was wrong before is to simply say the doctors couldn't determine why you had the problems, but they knew how to fix it, so it got taken care of. "The docs don't know/couldn't figure out what was wrong" is a lot more accurate than "Nothing was medically wrong."

Not having more consults and tests done to get a diagnosis when the treatment would be the same regardless of what was wrong makes sense to avoid more pain/risk of further procedures, or pain/risk from whatever was wrong getting worse. And (of course) there are always economic considerations.

Regardless of what was medically wrong (and it is very clear to me something was medically wrong), you needed to get it taken care of... what might have happened if it had gotten worse? You have nothing to be ashamed of. In fact, you have the right to be at peace for having the courage to do something that you knew would be emotionally painful to you, but was the right thing medically and to take care of your family. When people roll their eyes, sigh, or say stupid things like"suck it up," "quit being a baby," "there's nothing wrong with you," "stop overdramatizing," or any of a million other stupid things that people say out of ignorance or frustration, that doesn't mean you did not have anything medically wrong with you. And it doesn't make them right. It simply means they're ignorant or frustrated, and obviously haven't walked a mile in your moccasins. It sounds like you have friends and family that love you and have stuck by you in spite of everything you have been through. That says a lot more than words ever will.

Peace and blessings.

I had fibroids that due to their rate of growth, were feared to be cancerous tumours. My pathology report came back saying I had enlarged uterus, large fibroids, but no cancer. Doesn't mean there was nothing medically wrong, just means I didn't have cancer. Adhesions, while they aren't necessarily caused by a disease such as endo, are still medically wrong.

Thanks everyone!
Since this post, I've learned that I had much more scaring than I was originally told & that I do in fact have endo & clinically adeno.
I feel SO much better. & I'm now at peace with my choice & happy I did this...

That said, I'm bummed now because I just learned my Dr (who has seen me for 7+ years thru this pain) is leaving & moving out of state... Now I have to see someone new no one here treats endo & there's no specialist in my state!

Ali - great news on the surgery. Sad news on your doctor. How far is she moving?

Out of the state she's going into private practice back where her family is. maybe 10 - 12 hours away I'd guess.

i do hope she stays around long enough for you post op.

I too have had thoughts of if I had known it was going to be like this...I never would have done it. I'm sorry for the doctor telling you the tests were normal. I honestly think those are the cruelest words possible after you make the irreversible decision to have a hysterectomy. If only doctors could just for a moment stop and actually think about what they say to patients and how it may in turn effect them emotionally. Emotional well being is just as, if not more, important to healing. Just know that my thoughts and prayers are with you.

Just saw your update message and I'm glad you have come to terms with this...and I'm so sorry about you losing a doctor you have built a relationship with, it really is hard to find a doctor you 1. Trust and 2. Knows you long enough to tell when somethings not right. Sorry again for previous post but I'll still pray for you so that you find a specialist as well as a new GP you can rely on.

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Originally Posted by AliStacey I'm bummed now because I just learned my Dr (who has seen me for 7+ years thru this pain) is leaving & moving out of state... Now I have to see someone new no one here treats endo & there's no specialist in my state!

There are a few things you can do to find a new doctor:

1. Find out who is taking your current doctor's place.

2. Ask your doctor for a referral. You can also ask your doctor about the doc, who's taking his/her place.

3. Look on your insurance company's website for a list of doctors. You can ask your current doctor about any you find on this list.

4. Look on the Suggest a Doctor website: http://www.suggestadoctor.com. Hystersisters has a link to this website for us to recommend a doctor, so you might find a good doc there that someone here has recommended.

5. Look on the Hystersisters Doctor Directory. This is where doctors list themselves.

6. Look on the Rate MDs, Vitals, or Health Grades websites: http://www.ratemds.com
http://www.vitals.com http://www.healthgrades.com

Some of the doctor rating websites give patient comments and numeric ratings (stars), and some only give numeric ratings (stars). Some provide information about complaints, etc.

I DO NOT recommend ZocDoc... they don't have oncology, gynecological oncology, or any of the other gynecological subspecialties listed as a search option.

7. If there is a medical school nearby, see if there Is a program for the subspecialty you need. Maybe there is a doc, who is that kind of subspecialist, either listed as such or not, who is teaching there... and s/he might have some residents/fellows...

8. Look in neighboring states. Depending on how far away from the border between your state and the next one(s) over, you might find a doc close enough to the border in the other state to go to. Or a doctor from a neighboring state might come to a hospital/practice in your state once or twice a week/month.

Blessings.