I was diagnosed with endo in 2001. Since then I have had two laproscopic excisions of endometriosis. i am on continuous bcp’s and have not had a period for over two years. I am in constant pain. Why does endo continue after excisions? How does it still grow with no periods? What can I do to relieve the pain?
Hi, I was diagnosed with endo in '93 (it took a while to find a Dr. who even thought of it or would bother to diagnose it). I had a laparoscopy at that time to diagnose it and he removed some then. I was then put on birth control. That didn’t work, I continued to have severe pain. They put me on Lupron next which throws you into menopause. I felt horrible. Lupron is time limited to 6 months so then they put me on Depoprovera. I didn’t have the endo pain on that but it made me gain a lot of weight and made me tired - didn’t feel like doing anything. I was on that for 2 years and went off 'cause I couldn’t function. A few years later the endo started acting up again. I went thru about 8 months of horrible pain. I was sick 3 weeks of every month with it. My Dr. gave me some sort of pain pill - I can’t remember the name of it but I’m pretty sure it was an NSAID. She said it’s used for painful periods. That helped a little but it kept getting worse. I finally found a specialist and went in for a hysterectomy. The endo was everywhere, they even had to remove part of my intestine. He said I would have had kidney failure if I didn’t have the surgery. That was 4 years ago. I thought the problem was solved but about a month and a half ago I started having sharp pains in the right side of my abdomen again. (That’s where they removed the intestine from.) From what I know it doesn’t matter if your uterus is removed. If there is any microscopic amount of endo left anywhere it will continue to grow and spread. My advice to you is to try to find a Dr. that specializes in endo or at the least who seems to know something about it. Maybe you can try the hormone therapy, like Depoprovera. No matter what though, I would get in to a knowledgeable Dr. because after my experience of finding out how bad it was by the time they went in, I don’t think it should be put off.
Oh my. I had to re read the email because I thought it was my own. I have moved to Philly where there seems to be some knowledgeable doctors around. I went to a reproductive disease specialist who wants to put me on Depo Provera as well. The pain has not stopped and I can barely function. I would do anything not to be in this pain. I know that you said the Depo Provera made you feel horrible and gain weight. Did you try exercising? I am just wondering because I know some drugs make you gain weight but can be sort of offset by watching what you eat and exercising. I am asking just to see what I can expect.
I want to also ask you about something else you said. You said that you could not function on the Depo Provera shot, but you were not in pain. Do you think that the side effects of the shot were worth not being in pain?
I do not mean to pry but I must ask. Are you able to work or is your pain so bad that you cannot? I am going to law school in the fall and am trying to figure out what will make the pain stop before school starts. I am in so much pain every day that I have to be on narcotics that the doctor prescribes for me by the mass quantity. I cannot live like this and am hoping that the shot may help some of the pain. To be honest, being in chronic pain, every single day since last October (before that it was only during my periods)and being bed-ridden for most of it, has made me gain weight. If I can be somewhat active that would be sweet.
Thank you so much for writing to me. I REALLY appreciate it. That is very kind of you to share your story with me. It means the world to me.
-----Original Message-----
From: drg [mailto:endometriosis-cpt3504@lists.careplace.com]
Sent: Mon 7/2/2007 1:57 PM
To: Munro, Samantha
Subject: Re: [endometriosis] constant pain
I’ve had three laparoscopies. The first one was performed by a run-of-the-mill gyno who mostly delivered babies in the private hospital where he worked. He lasered the endo back in 2001.
The second op was performed six months later by an IVF/endo gyno who excised a lot of endo. There were places that the first doc had ignored (under my ovary, on the bowel and the ureter) that the new specialist treated. He also had to excise tissue the previous doctor had lasered. Apparently there was endo underneath where the other guy had lasered. So when they were bleeding they’d stretch the scar tissue that had formed after the lasering. No wonder I had been unable to work in the months before!
So it could still be there. I’m so glad that I went to an infertility clinic. I wasn’t trying to have a baby, but they see so many endo patients there that the quality of care was much higher!
On the topic of depo: I had my period for ten months straight and I lost weight (I was already 49 kilos so that was bad). I had to wait until all the depo was out of my system and then the period stopped. I also became quite aggressive and started taking risks and stopped acting like myself basically.
The third op I had was in 2004, 18 months after the last one. I’d been having pain and thought I still had endo. I didn’t. Apparently I had adhesions from the last operation and my ovary had stuck to the tissue underneath, so it really hurt when I ovulated on that side or was bloated. They separated the tissue and then used a new fluid that prevented adhesions from forming.
I still get pains sometimes: but they are in an area where they suspect I have adenomyosis. Because I still want to have kids and can’t take the pills (I get sad or agressive) there is not much I can do really. I may have another op in a few years just to double check the endo is not back though.
Have just read my post. Sorry if it’s confusing.
There are so many variables with endo. It takes ages to tell your story!
I would like to here from anyone who is in constant pain like me. Anyone? I would just like to know that I am not the only one.
-----Original Message-----
From: creativemeans [mailto:endometriosis-cpt3504@lists.careplace.com]
Sent: Sun 7/8/2007 9:51 AM
To: Munro, Samantha
Subject: Re: [endometriosis] constant pain
no, you are not the only one. when i have my period, the pain is unbearable…and when i don’t have my period, im constantly uncomfortable, which makes me very irritable. this year has been very frustrating for me. finally i found a doctor that knows what he’s doing. every other doctor couldn’t figure out whats wrong with me, and they always said endometriosis was the last thing they thought it was. then, i went to a specialist, who’s first thought was “it sounds like endometriosis to me”. this week i had a laparoscopy, and he discovered that it was EVERYWHERE. im only 23, and he said that i have the worst cast of endo that he has seen in a long time. im glad that i didn’t give up, and kept going for a 2nd, 3rd, 4th opinion… i knew that this pain just wasn’t normal… im still pretty new to this whole thing. i don’t know much about it. im still learning…and still in shock about the whole thing since i just found out 3 days ago. if anyone has advice, or even just some encouraging words…please share…
Yes, my pain is constant too, worse at period time, but uncomfortable all of the time.
I had depo years ago, it really messed me up. 3 months of bleeding and very unpleasant change in disposition. For me, I’m better off being uncomfortable but tollerable to other people than pain free and a total witch.
I’m not in constant pain, but I’ve noticed that if I’m very active physically, the endo responds with attacking my body with severe pain. On a good day, it’s just a mild pulling, stinging sensation that worsens as the day goes on and I take a pain pill (Vicodin) before bed. Yesterday I was very active and I got hit with some really bad pain last night where I ended up taking two pain pills. The pain is still here this morning!
Anyways…you’re definitely not alone. A heating pad helps. If you’re taking a NSAID or ibuprofen, make sure you eat something along with it because it will cause stomach upset. Neither NSAID or ibuprofen help me.
I’ve read online and been told by my doc that endo “feeds” on estrogen. So if you have your uterus removed but not both ovaries, the endo is getting the nourishment it needs to grow. My ex-doc went against my wishes and left an ovary and now, 4 yrs later, I’m waiting on my insurance company to send me the Lupron shot so I can shrink that stinker and the endo along with it. My doc says once you reach menopause, the endo isn’t a problem anymore because your body isn’t producing estrogen. I had my estrogen level tested and it’s very high. I was really hoping for early menopause (I’m 44). My doc and I are hoping that the Lupron will shrink everything enough to stop the ovary and we’re also hoping that I won’t even need surgery after I stop the shots. I can’t have surgery right now because the endo is that bad and my ovary is pretty much blended in with my bowel thanks to the adhesions.
I’ve heard some women go to pain management centers. It depends on the person, how you want to handle your medical care. So whether you talk to your doctor, get a new doctor or go to a pain center, I wish you the best of luck and I hope that you get some relief soon.