Is this endo?

First, some background but basically, I'm asking if it sounds like I have endo and what are the best options for me?

My right ovary was removed 2 years ago due to large dermoid cyst.

My left ovary was removed 4 months ago due to large endometrioma.

I have a double uterus that shares a cervix and vagina. The left uterus does not communicate to the vagina.

Since my last surgery, my periods are lasting at least 2 weeks. I just started progesterone to stop the current period. Doc is hoping this will regulate my periods. He also mentioned Lupron as another option. The bleeding stopped after 20 days.....just brown spotting now.

MRI showed more possible endometrial cysts on remnate ovarian tissue on my right and left sides.....ovarian tissue is sort of scattered about. Watching for growth. Right side ovarian tissue strand and cyst are very close to my ureter. I was born with only 1 kidney so damage to this ureter is scary to me. MRI also showed left uterus full of blood and a few cysts. Doc assumes endometriosis there too.

Aside from extremely long periods, the most important thing for me to get under control is the pain I have at the end of each period and sometimes when I'm not even bleeding anymore. It's awful....I feel like I'm going crazy because I can't tell exactly where the pain is. It's in my back on the left side, it's sitting on my left hip, in my left side muscles, in the front left side of my stomach. This pain started a year ago. I thought getting rid of the endometrioma a few months ago would take care of things but it didn't. The pain isn't as bad but it's still more than I can take. I've seen my chiropractor so many times, hoping he'll tell me it's related to my back but he says it has to be something internal. The pain in my back is strong though!

OB advises abdominal hysterectomy only if the current cysts grow, the bleeding can't be controlled or the pain is too great. I don't want surgery but I'm mentally and physically frustrated with all of this!

Does this sound like endo?
I've always had very painful periods but until the endometrioma, I didn't know I had endometriosis.

I have endo, but an entirely different situation than yours. So let me drop you some endo resources that may be helpful to you:
Endo/Adeno Resources.

I am not sure which type of dr you are seeing, but I highy recommend getting at minimum, a second opinion about your situation. As you may be dealing with endo, I would also recommend a reproductive endocriniologist as they often have additional training for endo.

Due to the fact that you have only one kidney and you have concerns about your ureter, I would be talking to a kidney specialist as well.

Each of us experience pain differently from our endo. I had basically no pain before my hyst. I have more now, over 5 yrs post op, than ever. But it is tolerable although there have been bouts where it was pushing the limit (turned out to be a hemorrhagic cyst at one point). I did however, have lower back aches, and still do, which can be common among women with endo.

Best wishes to you! Do know your sypmptoms, research as much as possible, and talk to your drs--ask them any and every question you can think of! And here is a link to an article about endo that has a link to a survey which will print out results you can take to your dr's appts: https://www.hystersisters.com/vb2/article_246643.htm.

Hi dkod

Here are some links about ovarian remnant syndrome (O.R.S.)
http://www.findarticles.com/p/articl...37/ai_91485377

http://www.endometriosistreatment.or...0syndrome.html

I agree with (((Weiser))), a second or third opinion might really help you. Chronic pain is miserable, I'm so sorry you are still hurting.

I have heard that ovarian remnant syndrome can be very painful. Do they think your symptoms fit that? Did they see any other endo when they were taking out your ovaries?

The pelvic nerves can send crazy singals sometimes far from the actual source of the pain. If the location -vs- source is a big part of the puzzle, you might ask your GYN to refer you to a pain management specialist who does pain mapping. I'm not sure how it works, but I've heard they can help with locating the source somehow.

Good luck. I hope you find answers very soon.
Gentle s & best wishes,
Beth