ENDO Messages for December, 2005: Re: has anyone had success with partial or total hysterectomy for adenomyosis

Re: has anyone had success with partial or total hysterectomy for adenomyosis

From: anonymous (anonymous@obgyn.net)
Fri Dec 16 14:24:44 2005

Messages sorted by: [ date ][ thread ][ subject ][ author ]
Next message: anonymous: "Re: Do gynocologist know if you are sexually active?"
Previous message: Rhonda: "Re: Do gynocologist know if you are sexually active?"
In reply to: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"
Next in thread: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"
Reply: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"

Hi Tracie,

I had adenomyosis, endometriosis and invasive cervical cancer. It took 6 years and several bouts of hemorraging before I got lucky enough that my regular gyn was on vacation and the gyn covering for him refused to ignore the glaring red flags that my symptoms were throwing up in the air. It also took a very detailed log of information to convince my insurance company that I was "worthy of a medical procedure for which they would have to pay" how so very generous of the jackals (sarcasm intended).

Anyway, after 6 years of excruciating pain, periods that lasted longer and longer and were heavier and heavier and being less and less capable of enjoying any quality of life I had a hysterectomy (uterus, cervix and one ovary removed - the other was healthy and left in place). The surgery quite literally saved my life but if the insurance company had gotten their way my children would have been attending their mother's funeral instead. (from the cancer not the adenomyosis or the endometriosis - just to be clear)

I have had zero pain since so yes, it was successful.

My symptoms besides those mentioned above included a belly so swollen that I looked, felt and walked like I was about 4-5 months pregnant. Standing more than 10 minutes was impossible without severe pain and a serious gush of blood and clots, even if I was not having a period at the time though it's difficult to say if that was from the adenomyosis or from the cancer or both. The swollen belly does not respond to sit-ups or other exercises, you can do 1,000 a day and it will still be swollen because it's from the uterus itself, not fat.

MRI can be used to aid in the diagnosis of adenomyosis but is not seen as 100% accurate as yet so don't be surprised if your insurance company vultures deny coverage. Lupron may help with the endo but it won't do diddly for the adenomyosis because that is happening in the deeper tissues of the uterus and hormones really don't have much to do with it - it's your uterus's response to trauma, sorta like scar tissue but different.

Nobody really knows what causes endometriosis, uterine trauma is what causes adenomyosis though the supposition that some cases occur spontaneously cannot be completely ruled out. Uterine trauma includes pregnancy (regardless of whether it resulted in a live birth or not and regardless of the method of delivery), surgeries such as a c-section, medical procedures such as numerous D & Cs, etc.

Hope this information helps you.

At Thu, 15 Dec 2005, Tracie wrote: >
>Thanks for your imput but I was looking for people who have had success
>not people who are against hysterectomy. I have done a lot of research
>and have not made a decision yet but would like to here about the
>success stories. I have suspected adnemyosis and am going to have more
>testing to confirm, but from the symptoms I am having and what my doc
>saw on my lap, enlarged spongey uterus they are pretty sure that is what
>it is. They can do a MRI and/or intervaginal ultrasound and another
>test with contrast to help make the diagnosis but unfortunately I do not
>have insurance so I am not sure what testing we are going to do.

>>At Wed, 14 Dec 2005, Tracie wrote:
>>>I was diagnosed with endometrosis and adenomyosis and my doctor wants me
>>>to try Lupron and if Lupron works then have a hysterectomy. I keep
>>>hearing all of these reports that most of the time hysterectomy does not
>>>work but where are the people who have had some success? My worse system
>>>is back pain most likely from adenmyosis, but also am now have
>>>heavy/clotting bleeding again. They only places they found endo when I
>>>had my lap was on my uterus and ovaries. I have one child and do not
>>>want anymore. I was wondering mostly about having a hysterectomy but
>>>leaving the cervix.
>>>
>>>Thanks

Next message: anonymous: "Re: Do gynocologist know if you are sexually active?"
Previous message: Rhonda: "Re: Do gynocologist know if you are sexually active?"
In reply to: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"
Next in thread: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"
Reply: Tracie: "Re: has anyone had success with partial or total hysterectomy for adenomyosis"

Women's Insurance Checklist from Auto Insurance Quote

use when must restrict search to only the endometriosis forum...
Enter search keywords:
	Returns per screen: Require all keywords: