Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Haven't been around for awhile... :( I could use some help and advice, though, and I knew this would be the place to turn.
In October of 2013, I had cysts discovered on my ovaries. They put me on a 3 month bc pill until my lap in February. I started bleeding every day. They told me it was from the cysts, to hang in there. Had my lap Feb 2014. Once in there, found out they weren't cysts, but endomitriomas. Nine of them. Plus stage 4 endo. Doc removed everything he could and I got to keep all of my organs. About two weeks post op I was feeling great. They put me on a 3 month Depo shot. The daily bleeding still didn't stop. Since that wore off, we've tried a 30 day pill, and two different Mirenas. To no avail. In early December they put me on some kind of 10 day antibiotic normally used for std' s saying that it would help calm the lining of my uterus. Still bleeding every day. So... to wrap it up, I have bled every day since October 22, 2013. Today is January 16, 2015. I have now officially given up. I can't give anything else a try. I've nearly run out of options. Tomorrow I'm sucking it up and calling my surgeon, even though I won't like any of the options I know he'll give me. Those are:
1. Lupron. I've been fighting him on that since October of '13. I'm so afraid to pump that poison into my body.
2. Do nothing. Not actually an option though since the endo has already done some damage to my organs and doing nothing will just let it grow with abandon.
3. Hysterectomy. Not even a great option, because my endo is everywhere. Even on my diaphragm. Doc said he got as much as he could but there is no way he would be able to get everything. So unless they can get it all, a hysto will only stop new stuff. The existing stuff will keep on growing.
I do not know what to do. But I do know that I will literally lose my mind if I go on like this any more. I have no idea how I've lasted this long. I have the world's most patient and understanding husband, but come on.
Please advise. Tell me what you would do. Tell me what you've heard that works. Tell me ANYTHING. Just please, if you can... I'd love to hear.
In October of 2013, I had cysts discovered on my ovaries. They put me on a 3 month bc pill until my lap in February. I started bleeding every day. They told me it was from the cysts, to hang in there. Had my lap Feb 2014. Once in there, found out they weren't cysts, but endomitriomas. Nine of them. Plus stage 4 endo. Doc removed everything he could and I got to keep all of my organs. About two weeks post op I was feeling great. They put me on a 3 month Depo shot. The daily bleeding still didn't stop. Since that wore off, we've tried a 30 day pill, and two different Mirenas. To no avail. In early December they put me on some kind of 10 day antibiotic normally used for std' s saying that it would help calm the lining of my uterus. Still bleeding every day. So... to wrap it up, I have bled every day since October 22, 2013. Today is January 16, 2015. I have now officially given up. I can't give anything else a try. I've nearly run out of options. Tomorrow I'm sucking it up and calling my surgeon, even though I won't like any of the options I know he'll give me. Those are:
1. Lupron. I've been fighting him on that since October of '13. I'm so afraid to pump that poison into my body.
2. Do nothing. Not actually an option though since the endo has already done some damage to my organs and doing nothing will just let it grow with abandon.
3. Hysterectomy. Not even a great option, because my endo is everywhere. Even on my diaphragm. Doc said he got as much as he could but there is no way he would be able to get everything. So unless they can get it all, a hysto will only stop new stuff. The existing stuff will keep on growing.
I do not know what to do. But I do know that I will literally lose my mind if I go on like this any more. I have no idea how I've lasted this long. I have the world's most patient and understanding husband, but come on.
Please advise. Tell me what you would do. Tell me what you've heard that works. Tell me ANYTHING. Just please, if you can... I'd love to hear.
Sorry you're dealing with this :( I know how much it SUCKS to bleed non stop, I bled for a year a couple of years ago. I managed to get it down to spotting (yay) and with some breaks in between.
Firstly...Is your doctor an Endometriosis specialist? If not...try and seek one of the big guns out I think that'll be your best shot at this point.
If you have a hysterectomy your best bet even with that is with them...it will give you the longest relief in regards to endometriosis deposits returning. Of course it's not a cure...
I'm not going to be very helpful in regards to the stopping bleeding... I've just switched from Mirena and BCP because my ovary was like WHAAATTT NOWAY I WANT TO PLAY... to the Mirena and Implanon which has had me spotting more frequently, with more flare ups and my ovary is giving me hell.
I'm just wondering if your doc isn't one of the big wig endo specialists if it's worth seeing one of them? They might have more options/ideas?
Thank you!
:)
I'm not sure where you live to be able to give you a good idea. Here are some doctors, are any close to you?
Dr. Andrew Cook from Los Gatos, California
Dr. Robert Albee and Dr. Thomas Lyons from Georgia
Dr. Mark Perloe from Georgia
Dr. Jeff Arrington from Utah
Dr. Camran Nezhat from California
Drs. Ceanna and Farr Nezhat from Georgia
hope some of these help :)
The book "Stop Endometriosis and Pelvic Pain" is a must-read. There's also a section on finding the RIGHT doctor. I just went to a regular, experienced OB-GYN for my lap and it turns out he didn't know what he was doing (and very, very few doctors do).
I'm now one of Dr. Cook's patients and am currently saving up the money to have surgery with him this year (he's out-of-network for me). Everyone at his office is incredibly nice and they've all listened to me cry more than once on the phone at this point.
I wish I had more immediate advice for the bleeding. Hugs!
I had taken 2 series of Lupron in conjunction with the laps, YET the disease within a year had consumed my abdominal cavity and vital organs, including my liver.
I am NO ADVOCATE for hysterectomy whatsoever. Mine was necessary in my case, to save my life. I often wonder how different my life would have been IF ONLY doctors had listened to me. Early diagnosis, even in my teens when my mom would repeatedly take me to the doctor, early treatment could have changed the trajectory of my life.
I, like you, was told that the disease is everywhere, like a shotgun blast. I took tumor-suppressing meds for 7 years, until my body rebelled against the onslaught of steroids. I was forbidden to take any type of HRT, even bio-identical compounded...nope.
I have near-fatal wounds from those who choose to "shoot the messenger". I just don't sugar coat a turd and serve it as a truffle. I'm real about a disease that is EVIL. I don't post often anymore, because some people can't handle the truth. Hell, I can't handle the truth...but I exist with it every day.
I check in often, so feel free to ask my anything.
Hugs~~Pup