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Endometriosis confusion

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Old 05-24-2010, 09:31 AM   #1
Join Date: May 2010
Posts: 6
ElusiveKismet HB User
Endometriosis confusion

In May 2008 I had a second trimester miscarriage and a few months after that my cycle has taken a turn for the worse. I had my period for 31 days, the pain got worse and had pain between periods.

Went through a year dealing with the doctor I've been going to since I was 18 and he kept dismissing me. So, got a new doctor who suggested endometriosis. Had laproscopic surgery to confirm the diagnosis. I was told I do have endometriosis. I finally asked him questions and he said, "on a grand scheme of things your endometriosis is like stage 1 - there wasnt much there at all." He made me feel that my endometrisos was insignificant to the pain I am having.

Anyhow - could I be missing something? Also, does severing the uterine nerve mean I shouldnt be in pain anymore at all?

Could it be something within my uterus causing the pain and heavy periods?

I dont know where else to turn on this


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Old 05-24-2010, 12:25 PM   #2
Join Date: Oct 2007
Location: Chicago
Posts: 7
Shannon0607 HB User
Re: Endometriosis confusion

Ummmm....first of all I am so happy that you have gotten a diagnosis. The worst part is always wondering if there is something wrong or not. Second of all, it does NOT matter what stage of it you have. There are some people that have stage IV and don't even have symptoms and then there are people with stage I who have horrible symptoms. It all depends on your adhesions and such. Stage does not matter. Pain is pain. You know your body. Don't ever let a doctor take that from you.

Old 05-24-2010, 06:01 PM   #3
Junior Member
Join Date: Apr 2010
Location: Newark, DE
Posts: 41
andeflora HB User
Re: Endometriosis confusion

Hi... I have pretty bad endo and have seen specialist after specialist. You should look into having a sonohysterogram. It's easy... basically they use a speculum, a very thin, flexible catheter will be inserted into cervix into the lower part of the uterus. The speculum is removed. A vaginal ultrasound probe is then placed into the vagina. Through the catheter, a small amount of saline is injected into the uterus to separate the walls. This allows them to see if there are polyps, fibroid tumors, cysts etc.

I have tried several treatments and am getting ready to try another, Zoladex. Lupron did not help me because I have so many adhesions and endo on my intestines, colon and kidneys. I do not know what stage I am at, but my specialist told me pain has no factor in what stage you are at. Some of her patients are stage 1 and have ten times more pain than stage 3 or 4.

You should NEVER bleed that long. I went today after bleeding for 14 days and she immediately said something is very wrong with that. And is looking into it.

Other than the Lap, what have they tried to help you?? Where are you located? If you are close to where I am I could give you the name of a few great reproductive endocrinologist. That is really who you need to see.

Good luck, I really hope you get some help and find an end to your pain!!!!

Old 05-25-2010, 04:02 PM   #4
Join Date: May 2010
Posts: 6
ElusiveKismet HB User
Re: Endometriosis confusion

Thanks for responding and the encouragement.

My doctor suggested Lupron, but my husband and I are going to try to have a baby soon. The doctor suggested pregnancy helps the symptoms of endometriosis and my chances of getting pregnant are good. So, we've decided against the Lupron for now.

I live in Columbia, SC -- I haven't heard of the procedure suggested and will ask my doctor about it when I have my post-op check up. I have heard people say pain varies among people.

What started this feeling is when my doctor said his comment about the endometriosis being minimal and, "not at all what he was expecting" based on my pain. That is why I was confused.

I thought perhaps my miscarriage had something to do with it because everything went downhill when we lost the baby. I guess for now I'll just deal with my pain and hopefully we'll be able to conceive.

Thanks again for everything!!!

Old 05-27-2010, 06:59 AM   #5
Join Date: May 2010
Posts: 6
ElusiveKismet HB User
Re: Endometriosis confusion

Just an update.

My period started, this is the first post surgery, and it's the absolute worst period I have ever experienced. I am going through a super tampon ever 1.5 hours. I have never had to do this.

I also feel very weak, nauseous and the pain is absolutely horrible at times.

Is this common after a lapro surgery? I am calling my doctor today.


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