Endometriosis pain again...

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Lilukalani
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 7/15/2011 3:54 PM (GMT -6)   
Hey everyone. I'm a little frustrated and confused and I just kind of want to vent a little. I was diagnosed with Endometriosis and had surgery to remove as much of it as they could May 18th. I have two types: Firecracker and Bubble Endo. The Firecracker Endo they were able to remove all of but they couldn't remove the Bubble Endo that covers the entire surface of my bladder. They told me they didn't want to remove it because it would have caused me extreme pain. Anyway, after the surgery I felt a lot better. I didn't feel that horrible pain and it lasted for a while until my Depo Provera shot ran out. For 2 weeks before I was due for another shot, I was in extreme pain every day. I thought that once I got the shot again that the pain would go away like it usually did but it hasn't. I'm still having bad pain every day. Every morning is just a struggle to move and I don't understand. I thought the surgery would take away this pain and that my Depo Provera shot would help. I talked to my Gynecologist and he highly recommends I go on Lupron. I've talked about that before but now I'm starting to think that maybe I should try it. My Family Physician has put me on Prozac to combat the horrible mood swings the Depo Provera is giving me so that should help the mood swings with the Lupron, I hope. I just don't understand why I'm suddenly having a lot of pain again and I really hope that the Lupron will help with it. I don't know what else to do. If any one has any advice or experiences of their own to share, please share it. It would help me tremendously. Have any of you who suffer from Endometriosis had pain again like I'm experiencing? I really thought the surgery would have helped me for longer than just a few months. Thank you for taking the time to read this, I really appreciate it!

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 7/15/2011 4:27 PM (GMT -6)   
I understand how you feel. I went undiagnosed with endometriosis for years. Then a hysterectomy found adenomyosis, adhesions from all the previous surgeries for ovarian issues and pelvic pain, which caused the endo to be trapped in the adhesions. Now I have no female organs left, my insides are completely covered and glued together with endometriosis and adhesions, and I live with that pain you describe everyday. Depo Provera only worked for a while for me, before becoming ineffective. I can't stand endometriosis. Its like a punishment, as if getting your cycle, cramps, mood swings and PMS weren't enough punishment for being a woman and we needed more reason to cause pain. It can be hard to treat, if treatment is an option. For some women, like myself, Lupron, Depo Provera and hormones are no longer an option.

Lupron is not for everyone. Please do some research on it and discuss your options with your doctor. Sadly, the surgeries to remove endometriosis are not always 100% successful, and it can return. The surgeries can also do to others what they did to me, cause scarring (adhesions) that form on the bladder, bowel, and can creep as high as the diaphragm as it did in my case.

Please be careful. I find that heat helps, as does sitting in a hot tub, bath tub, or pool. As odd as this sounds, gentle walking and mild back and arm stretches helped me as well. When other things were less tight, the endo pain is not always as bad. Some days those things are not possible though.

Have you ever tried massage therapy or accupuncture? I hear a lot of women have success with those, but they are out of our price range for treatment.

May you be feeling better soon,
Mindy

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 7/15/2011 9:00 PM (GMT -6)   
I have suspected endometriosis (haven't had a laparoscopy to confirm) and at times it has caused me severe pain. Right now I am having decent success on continuous birth control pills, but it took a long time to figure that out. The first pills I tried were too low dose and I spotted all the time, which was basically being in moderate pain all the time rather than severe pain once a month.

Lupron definitely helps some women, but it also has risks and can only be administered a limited number of times in your life. I would make sure you've done your homework, and that you have a plan for what to do after the course of Lupron.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 7/15/2011 9:29 PM (GMT -6)   
Unfortunately, the best treatment for endo is surgical removal of the endometriosis. Medical treatments such as Lupron and Depo are temporary and most women end up in pain again. I'm sorry you are in pain again so soon after your surgery. It's only been 2 months, you are still recovering, so there is still a chance that more of the pain will go away.

I have been researching endo for about 10 yrs now and have never heard of firecracker and bubble endometriosis before. Nothing showed up when I researched it either. Do you have any info on these types of endo?

Do some research and see if you can find a surgeon experienced enough to remove all of the endometriosis. As Mindy said, surgery can cause its own problems so you want to get the best surgeon you can. The Center for Endometriosis Care in Georgia has a great reputation. They take cases other doctors won't. I strongly suggest you send your records to them for a review.

Traveling to get care can be scary and expensive but at least consider it. California and Maine also have great docs. These are the top specialists but there are many other good endo surgeons throughout the country. Unfortunately, many docs consider themselves specialists but don't have the skills and experience to successfully treat complex endo.

I was diagnosed with stage 4 endo during my first surgery. That doc did not remove all of it so I ended up having another surgery about 6 yrs later. That surgeon specializes in pelvic pain and endo. He did a great job and I feel better. Unfortunately, I still have a problem with adhesions and I have some complications from a hernia repair so I am not pain free but I am much better.

I wish I could help but endometriosis is difficult to treat and cure. Do research and get another opinion before you make any decisions, especially with Lupron.

Good luck.

Lilukalani
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 7/16/2011 11:31 AM (GMT -6)   
Thank you everyone. Dagger, my surgeon didn't explain the types of endo that I had very thoroughly. I think she called it those names because of the way they looked and not because of something more complex. She explained that the firecracker endo looked like splatters and had a kind of firecracker texture. The bubble endo looks just like small bubbles. I wish I could give you more information than that.
I have done a lot of research on Lupron and have asked several different Gynecologists and they all said that I don't have much of an option other than Lupron. I asked them all if there was any other treatment I could do but they all said no and that Lupron was my best bet. Overall, I have talked to my family physician and 5 different Gynecologists and they all told me the same thing.
Hypercalcemia, Anemia, Loin Pain Hematuria Syndrome, IBS, Endometriosis

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 7/16/2011 9:33 PM (GMT -6)   
You sound so frustrated, which is understandable. There are many days that I wish there were doctors that specialized in body transplants! That would solve so many problems. Sadly, that is not an option.
You have choices though Lilukalani. As Dagger was trying to say, sometimes consulting with a certified specialist that does nothing but treat endo can open up treatments and surgeries that can create long lasting relief. Lupron does not have to be your only option if you do not want it. But also keep an open mind! Lupron may work well for you, but as Dagger said, it can only be used a certain number of times during your life and does not always create permanent relief.

Keep on trying. I am hoping you find what you need to stop your pain.
Mindy
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