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New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
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07-26-2011, 10:04 PM
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HysterSister
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Posts: 15
Hysterectomy: August 4th, 2011
Surgery Type: TAH/SAH
Ovaries: Removed both
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New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
I posted this already, but I think I posted it in the wrong area...thanks for being patient with me.
Well, I really wanted to finally say thank you for being such a support to me. I I've never posted here before, but I've been "creeping" for some time. You have all been such a support to me! I can't thank you enough.
My Story (sorry it's so long):
I'm 35 years old.
My symptoms are: Severe abdominal pain on my left side, knife-like stabbing pain, rectal pain, pain during intercourse, vomiting, bloating (we are talking HUGE-can't-get your pants on-looks like you're having twins bloating)..I don't even leave my house for at least 1/2 of the month...I just have to stay home. And now, for the last several weeks I have something that I can only describe as my bones ache in my hips, tailbone, and back of my legs and my butt...it aches so bad at times I want to just scream. Anyone else have this?
In May 2011, after my years of pain became unbearable to the point of praying God would just let me die (and I was serious - I had rationalized it all out in my mind that it would be just fine if I died), I finally found a GYN to listen to me, (since the GYN I had gone to for 11 years just plain wiped his hands of me and said the pain was "nothing on his end"...I had "just a simple cyst" and "many woman live with" those...he actually stopped seeing me when I would come in and sent the Nurse Practitioner in.)
Well, after going to my family doctor (not knowing where to turn) and describing how bad things were, he sent me to another GYN. This guy I rate almost up there with Jesus in my book. I can't believe I found him....He believed me! He really believed me!!!!!
Had a Lap in May and found that I have stage IV Endometriosis, a mass on my ovary and a frozen pelvis. My colon is glued to my ovaries and uterus. My bladder is glued to my uterus and abdominal wall. My ureters have Endo over them also. He said the Endometriosis looks like a shotgun went off; it's everywhere (kinda weird looking...looks like strawberry jam spread all over my insides - sorry for those who are squeamish...not sure there are too many of you on here...I've read a lot of posts ). During the Lap the surgeon couldn't get to the mass on my ovary since everything was so "frozen". He just left it and decided everything needed to come out anyways. The only thing I got from that surgery was a big bill and beautiful pictures of my insides (they are really good surgery pics)...oh and a nice long nap.
Now, I will be going in on August 4 for a TAH and possible bowel resection (they also talked to me about a worst case scenario colostomy bag...so sad to me...but wanted me to be prepared, I guess). We FINALLY got a three surgeons schedule together to do this (Gyn, colorectal, urologist). This was no easy chore! You finally find the best specialist, then you have to see if they can go to the hospital your insurance will cover....grrr. Insurance...a whole 'nother topic!
Right now, I'm scared of oh so many things. You name it, I've made the story up in my head...bleeding out on the table, getting a blood clot, or stop breathing for anesthetic...and on...and on...and on....
My biggest fear is of course, cancer. I have a family history of ovarian cancer (Great Grandmother's twin sister - DX at 18 and died, and a Maternal Aunt DX at 23 - remission for 20 years). Also, a lot of breast cancer in relatives. Plus, I feel my symptoms make me feel a little concerned.
I asked about cancer and he said he didn't "see" anything that looked suspicious, but then backed it up with the fact that he couldn't move anything around because all the adhesion (glue) and endo. Of course, he couldn't guarantee there would not be cancer, but seemed to be optimistic.
Tomorrow I go for my Pre-Op apt. I'm racking my brain for questions I've wanted to ask and never wrote down when I was thinking of them, therefore I've forgotten them. I'm gonna hang out on Hystersister for a while tonight and see if some of your posts spark my memory.
Well, that's my story. This is so surreal typing it all out....I haven't done that before...nor have I told too many people. I'm kind of private. My DH is kind and tries to understand...I know he's probably tired of me "being sick" all the time....I'm tired of it too. We can't wait for me to be well again.
Thanks so much for being a support to me.
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07-27-2011, 12:05 AM
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HysterSister
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Posts: 23
Hysterectomy: August 11th, 2011
Surgery Type: TAH
Ovaries: Removed both
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Re: New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
I have severe endo and have had three surgeries for it. One lap and two incisions. My uterus was attached to my colon and I had a mass of tissue (omentum) around my left ovary. They remove 10 inches of my colon and the tissue surrounding my ovary. The endo had penetrated my colon and was making a hole. My second incision was May 2010. This time they had to remove my appendix because endo had spread to it.
I know the pain you feel. I was ok for a while but it eventually returned. I wake up in pain every morning and have to take percocet to get though the day. I have sharp stabbing pain that will radiate down my legs, my lower back always aches, my bladder hurts when I urinate, pain during sex, I also have cramping and feel like I'm on my period all the time. Before I had my colon resectioned I had excrutiating BM's. I can honestly say I know how you feel.
There is a section on this site for questions to ask you Dr. You may want to check there to spark your memory. You will probably have to do a bowel prep the night before so eat light that day and drink plenty of water so you don't get dehydrated. That happened to me and it was very difficult to get an IV in the next morning.
If you have any questions for me I will be up for a while (another sleepless night). Hope this helps some.
Karen
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07-27-2011, 12:33 AM
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HysterSister
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Posts: 15
Hysterectomy: August 4th, 2011
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
Just hearing that someone else understands me is such a relief...brings tears to my eyes.
I have a question...when/if they did your hysterectomy did they take your ovaries too, but then did you STILL have problems with the endo...were you taking HRT? And if so, when I talk to him tomorrow do you feel I should ask him how he's going to get rid of all this? I have a feeling he thinks once I get rid of my ovaries (estrogen), the rest of the endo will be fine if they don't get it all...in fact, the colorectal DR. that. What are your feelings about that, having been down this route?
Also, I have that sharp pain sometimes up near/under my ribcage. I told the doctor and he said it is referred pain. I'm not buying this story. I plan on pressing him to check into it while I'm in surgery.
Can you explain the bowl resection a little to me? That is what I am most uneducated on and can't find a lot of info. What is the pain/recovery time like with that? Did you have to have a colostomy bag or were they able to go without. Did you have to have a tube down your nose? I know I sound so silly asking these things, but I'm so uneducated on it, and the DR says they can't tell me much until they get in there...well, you and I both know by that time, it will be too late to tell me...I'll wake up and it's done. You can be honest with me...I just need to know.
Thanks for your help, Karen. I'm so sorry you have been through all of this and continue to deal with it. What I'm finding out is it's a very hard disease to live with, not only because it's so painful, but people just do not understand it. I feel like when you say, "I have endometriosis"...people hear, "I have really bad periods/cramps" and it's so much more than that...it's just debilitating.
Take care,
Mandy
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07-27-2011, 01:08 AM
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HysterSister
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Posts: 23
Hysterectomy: August 11th, 2011
Surgery Type: TAH
Ovaries: Removed both
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Re: New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
Hi Mandy
I'm scheduled for my TAH on Aug 11. I hope this will take care of the endo. I have heard that it can come back if there is any estrogen supply or if any endo is not removed. I'm having both ovaries removed as well as the uterus and the cervix.
When I had my colon resectioned I woke up with a NG tube in my nose. It's to keep the stomach juices out so you don't get sick. It's uncomfortable and a little painful when moved. I did not have a colostomy bag so I don't know a lot about that.
I did have a lot of pain to start with but I had a pain pump and it was well controled. The pain from surgery is a different kind of pain that what we are experiencing now. I actually felt relief from the endo pain, I was just really sore from the surgery. I was in the hospital for 9 days. That's because I had an infection under my incision. It cleared up and everything was fine. I stayed home for about 6 weeks before returning to school/work.
My Drs ended up making two incsions during that surgery. They started out like a c-section but had to cut up to my belly button in order to resection my colon. I had 52 staples. When the colon is resectioned they basically cut out the bad area and fit the two ends back together. I have staples where they put it back together and the tissue grows over them.
Before my resectioning I would have pain under my ribs. Part of the colon is under the ribs and that could be the pain you are feeling. I would have a squeezing/cramping feeling under the ribs even though all my issues were in the lower abdominal area.
I hope you feel better soon.
Karen
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07-27-2011, 11:33 AM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: New, My Story, Endometriosis, Ovarian Mass, Possible Bowel Resection
(((Ladies)))
Anyone with an endometriosis diagnosis and/or endometriosis questions is welcomed to visit our Endometriosis Support forum to learn more.
Briefly, neither a hysterectomy or oophorectomy, or both at the same time, are cures for endometriosis. The key is the careful excision of the endometriosis implants themselves. The problem is that most doctors are not able to use an excision method, and many doctors are unable to locate and/or recognize all of the endometriosis. Thus, often endometriosis is either intentionally or inadvertently left behind and it can then continue to cause issues whether or not one has her reproductive organs.
Something you should each know. While estrogen is believed to be the fuel for endometriosis, it can also be critical for overall health. Thus, choosing to have an oophorectomy and then not use HRT to try to prevent endometriosis issues can open the door to many new health concerns.
Also, endometriosis can create its own supply of estrogen, fat cells can produce and store a type of estrogen, there are dietary means of providing estrogen to the body... All of these methods and more may not be enough to stave off surgical menopause issues or prevent the health concerns that go along with them, but they could be enough to allow any remaining endometriosis to flourish. We do have women who have posted in the Endometriosis Support forum who were post hysterectomy, post oophorectomy, and had never used HRT. They were still dealing with endometriosis issues and some required additional surgery.
Hence, it is critical to find a physician who specializes in treating endometriosis. In general, those of us with endometriosis should not be going into OR with an OB/GYN. We need the best of the best as our future depends a great deal on the skills our surgeon. A surgeon whose primary focus is endometriosis will have superior knowledge and skill that can be invaluable to us.
For more on this topic, definitely check out the resources and threads in the Endometriosis Support forum. We also have information about how to find the right specialists.
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