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Old 04-19-2010, 03:35 PM   #1
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Join Date: Nov 2005
Location: Colorado Springs, CO
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jam17 HB User
"hidden endometeosis"???

hi all.

I have posted in other boards but not on this one yet..

Here is my story..

On 1/30/10 i went to the ER with extreme Left side pelvic pain. After CTscan and Ultrasounds, Exploratory Surg(only finding a small ovarian cyst that was removed) all they could find was fibroids in my uterus. they are small but there are about 6 of them.

I was in a lot of pain and was back and forth to the Hosptials for that first week. 2 admissions and 4 ER visits.

Drs have said that the fibroids are too small to be causing this much pain.

I went off of Birth control 4 months prior to this happening. I am 34 yrs, Husband is sterilized and i have not had kids and do not want kids.

as of today 04/19/10.. i am still in pain.. have tried different birth control meds to regulate my periods again.. and nothing has changed.. Vicoden and Morphine Sulfate Contin have not taken away the pain. My 2nd GYN mentioned that i could have "Hidden Endo" basically... they just cant find it.

Now after the few months of pain.. i am going crazy. i made another appt with a 3rd GYN to discuss what can be done.. i have no issues with getting a Hysterectomy.. but no one wants to do it on a 34 yr old with no kids..

I just want to get out of pain.

Anyone else been through this hell?

 
Old 04-20-2010, 03:05 AM   #2
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Location: Canada
Posts: 826
estria HB Userestria HB Userestria HB Userestria HB User
Re: "hidden endometeosis"???

Hello Jam,

The only problem with considering a hyst is that your uterus may have nothing to do with the pain and it will not only be for nothing but the surgery may cause new problems.

I was on birth control from the age of 20 until 40 years of age (I also don't want children) and when I hit 40, I started experiencing pelvic pain and heavy irregular bleeding in the middle of my "cycle" (if you can call it that on the pill). My doctor told me that the pill was probably causing the problem and he wanted to put me on a different pill. I say no way and went off the pill completely. The bleeding immediately stopped and my cycles became regular almost immediately after stopping the pill. However, I experienced, what I now know to be ovulation pain. It was quite excruciating and left all of the muscles and organs in that area quite sensitive. Since I did not know what this was, I went back to the doctor and he did an ultrasound. They found an 8 cm ovarian cyst which I watched for a year and a half but which I eventually had to have removed, along with my ovary and tube (last April). Throughout this entire time, I would have ovulation pain which would put me out of commission for at least a day. In addition, I had pain from the cyst occasionally as well (it felt like someone had kicked me in the gut .. only way to explain it).

Heating pads worked at reducing the pain as did the anti inflammatories such as Naproxen and over the counter ibuprofens like Advil (these are better than pain killers at reducing gyne pain as they counter the prostaglandins that are responsible .. it's not power that you need with this kind of pain but the right mechanism for attacking the cause). They did not work completely but they reduced the pain enough for me to function.

After my surgery last April, I acquired a new pain and that is pain with urination. Evidently the catheter they insert during surgery can sometimes cause a type of urethritis that is ongoing. I was given potassium citrate to take regularly and told that it would go away in 6 months .. that was about 8 months ago. The pain is much less (I was starting to get it even when I did not have to urinate) and is indeed going away but tends to be related to my menstrual cycle.

All this to say that there are many possibilities that could be causing your pain and starting to remove organs blindly, hoping to alleviate the problem, may not be the right approach as this can actually make things worse.

Have you considered going to see a pelvic pain specialist ? Try to find one in your area. You can always start by seeing a pain specialist and then try to get a referral to a pelvic pain specialist from that person. Pain specialists are usually anaesthesiologists with special training in pain. Some of them go on to sur specialize in pelvic pain. Usually a pelvic pain specialist works with a team of specialists that include a uro-gynecologist, physiotheraphists who specialize in pelvic pain, perhaps a gastroenterologist etc.. They will do a work up on you to get to the root of your problem and they will choose the least invasive method to get rid of your pain. These specialists have found that many women end up having unnecessary surgery which sometimes makes things worse (ie. causes new problems).

If you think that a hyst is the only way, this is your choice, of course. I just wanted to let you know that there are other options for pelvic pain that cannot be explained by the standard tests. It is evidently more common than we think. You may be interested in picking up a book called,"A Headache in the Pelvis: A new understanding and treatment for chronic pelvic pain syndromes" by David Wise, Ph.D. and Rodney Anderson, M.D.

I hope you find a solution to your pain very soon.

All the best.

Estria

 
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Old 04-30-2010, 04:03 PM   #3
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Join Date: Nov 2005
Location: Colorado Springs, CO
Posts: 47
jam17 HB User
Re: "hidden endometriosis"???

Thanks for the response...

i am still in pain.. it is daily, constant, and annoying as all get out.. but also it is not going away.. even with Vicoden and Naproxen (was on Morphine Sulphate Contin also but weaned myself off it)

I have been to a General Surgeon, and a urologist and had numerous CTscans, ultrasounds and an IVP (x-rays) which checked my kidneys and bladder... the only thing that came back was a small 2cm ovarian cyst (which was removed on 1/31/10 during an emergency laproscopy) and numerous small fibroids in my uterus.

My appt with the 3rd gyn has been moved because "she needed that day cleared" it was supposed to be May 7th .. now its the 27th.. i cried on the phone..(and tearing up now) cuz i have been in pain for 3 months.. and cant take much more in keeping my sanity.

the question is still out there though....Has anyone ever experienced or heard of "Hidden Endo".. basically not finding the endometriosis in the abdominal cavity??? Please send me a private message if you do not want to post.. just looking for more info..

Thanks

 
Old 05-01-2010, 11:00 AM   #4
Senior Veteran
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Join Date: Mar 2007
Location: Canada
Posts: 826
estria HB Userestria HB Userestria HB Userestria HB User
Re: "hidden endometriosis"???

Jam,

Get a referral to either a uro-gynecologist or a pelvic pain specialist (usually a pelvic pain specialist has a uro-gyne on staff). These guys are experienced with the problems you are going through. Hidden endo usually brings pain around your period. You seem to be having pain all of the time. More than likely an exploratory laparoscopy will be recommended as the next step so be ready for this.

You certainly cannot keep living like this. See if you can get a referral to one of these specialists instead of the gynecologist. Uro-gynecologists are specialized in the problems that you are describing .. as are pelvic pain specialists.

Hang in there.

Estria

 
Old 05-26-2010, 04:45 PM   #5
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Join Date: May 2010
Posts: 17
1lovedmama HB User
Re: "hidden endometeosis"???

jam317,

I had hidden endo,as well as fibrosis of my uterus, I understand the pain completely! I was only 32 when I had my hysterectomy done. After my 11th miscarriage. 2 exploitative lapros. Burning the uterus, tying my tubes. and checking all other colitis possibilities, They went in to take the uterus. That is when they discovered that my uterus had all but calcified. I agree go to the specialist. Suggestion though, If possible keep the ivories.

1lovedmama

 
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