Diagnostic Lap Scheduled

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Lilukalani
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/4/2011 6:51 PM (GMT -6)   
Hello! I have a Diagnostic Lap scheduled this month to diagnose and treat Endometriosis. I'm nervous but also really excited! I've been suffering from this pain ever since I hit puberty at age 11 and as I got older, the pain got worse. I'm 21 now and never have I been so happy to have a surgery in my life. It was last year when I started seeing my Gynecologist because I had gotten my period and it was incredibly heavy and it wouldn't stop. It lasted 2 weeks until I decided that enough was enough and I went to see him. He has since put me on Depo Provera to stop my period, which works but to be honest, doesn't help the pain at all. He's done so many tests on me to figure out what's wrong and all came back negative and with all of my medical history and exhausting every test, he's positive that I have Endometriosis. How severe it is, however, he doesn't know but he's being optimistic. He believes that if I do have Endometriosis, that it could be causing my bowel problems as well (I was diagnosed with IBS because I go maybe once a week, and I'm on a high fiber diet and taking meds for it but I still only go once or twice a week). So now he's scheduling the test that will show exactly what is wrong with me. I'm excited because now I can finally know what's wrong and how to stop this pain and finally have a life! I'm nervous because I'm afraid of what he'll find. What if he finds something other than Endometriosis and it's worse? Or what if he finds nothing at all? Maybe I worry a bit too much... but either way, finally knowing the truth has got to be the best feeling ever. The only part of this whole situation that worries me is the after treatment. He said he'll give me something that will basically have me going through menopause, shutting down my ovaries and then he'll give me something else to kick start it back up again, almost like starting from scratch. He'll give me more details about that when the time comes but I wonder how long that process will take and how painful it will be. It doesn't sound very pleasant... Maybe some of you can explain it to me a little better?
Anyway, sorry for rambling. I just really wanted to tell some people who would understand and listen. Everyone here is absolutely amazing and extremely kindhearted. So, wish me luck!! And thank you so much for reading all of this!

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 4/4/2011 8:29 PM (GMT -6)   
Lilukalani,

I know exactly what you mean! I had endometriosis for years that went undiagnosed, so your joy at having surgery is familiar to me. Your fears and worries about finding nothing are very valid. I was told for years that nothing was wrong with me and it was all in my head. Like you can force your cycle into abnormality simply by wishing it.

Just a word of caution for you. Take care of yourself and understand the possibilities and process of a treatment before undergoing it, please! My laparoscopic surgery history is extensive simply from the nature of my illness. Adhesions formed from the endometriosis, surgeries, and infection and are causing my pain, IBS, and vomiting/fainting issues.

My prayers go out to you for a successful, informative surgery that gives a clear diagnosis and much hope for effective treatment.

Keep us posted on the outcome! I hope the waiting for surgery passes quickly.

Happy hugs!
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw

Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, arthritis, kidney stones, depression, 9 pelvic surgeries for pain, ovarian cysts, adhesions. Fentanyl patch, Vicodin, remeron, trazodone, dicyclomine, Miralax, Colace, Multivitamin.

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/5/2011 1:24 AM (GMT -6)   
You might want to do some research on endometriosis before your surgery so you can make sure your doctor knows enough about it to treat you successfully. Ask if your doctor plans to surgically remove, not burn off!, all of the visible endometriosis. What does your doctor plan to do about any endo on your intestines? Some docs will tell you that they can't remove all the endo especially on the intestines but there are true specialists that can remove all endo surgically, including on the intestines.

It sounds like your doctor plans on giving you Lupron. This medication is not a cure for endo. It does help some women but the pain usually returns when they stop the treatment. Most docs will only let a woman take Lupron for six months because it can cause bone thinning and even tooth loss. The side effects can be disabling and become permanent for some women. Lupron will plunge you into menopause (hot flashes, memory problems, fatigue, etc).

It sounds like your doc is talking about also including "add-back therapy", basically giving you some of the hormones that the Lupron is suppressing. This may help with some of the side effects but some docs believe that this defeats the point of the Lupron, you are adding back the hormones that encourage the endometriosis symptoms.

Lupron shots are usually given once a month so it you have a bad reaction, you are stuck with it for a while. They say the first month is the worst and you should feel better after 2 or 3 shots. Some women do and some women don't. I don't mean to scare you but I am not a big fan of Lupron, it has ruined the lives of a few women I know. One had a stroke and two others ended up with chronic pain (fibromyalgia) that they and their doctors believe was triggered by the Lupron. The women in my support group that took Lupron for extended periods ended up with all kinds of dental problems, including tooth loss.

I had surgery to remove endometriosis and scarring about 1 1/2 years ago. I saw a specialist that was highly recommended by other women with endo. He does not use Lupron in his practice, he says that while it does help some women with their pain, it usually makes them just as miserable in other ways. It does not improve their quality of life and they usually end up back in pain a few months after the Lupron treatment ends.

I don't want to scare you or remove hope, I just want to make sure you get the information you need to make informed decisions.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/5/2011 4:05 AM (GMT -6)   
I don't know anything about endometriosis, but just wanted to wish you all the very best with your procedure.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 4/5/2011 4:06 AM (GMT -6)   
I had endo in the 1980s and 1990s. I had a total of 15 laps one every year to to get rid of the endo. Aftewr every surgery I tried to get pregnant and to no avail. hubby went thru fertility testing and he was cleared. My endo had multible organs stuck together and endo was like an orange peel. when you peel an orange you are left with a white membrane over the orange. the same with endo. thin layer remains and that is why you feel good after surgwery but as the months progress pain comes back and so does the infertility. Laps do cause gas in your chest and bacl when you wake up. Do the peppermint hard candy trick or peppermint hot tea. That will help and keep moving in your bed. Lay a pillow on that bubble of gas and lay down on that pillow- bubble will hurt but disapate.

I wish you all the luck and have a speedy recovery. Keep us posted during your recovery. We will be thinking of you.

Soft Hugs
Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

Lilukalani
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 4/5/2011 8:51 PM (GMT -6)   
Thank you everyone! I will definitely keep you all updated and make another post after I get my surgery. It might not be for a while, but I won't forget. And thank you so much for all of the information! Thanks especially to you, Dagger, for all of that info as well! I was very skeptical about what my doctor had mentioned before about the whole menopause thing and I will definitely bring up all of that to him. I REALLY would like a different option other than the Lupron and "add-back therapy" if there is any, and I'll be sure to ask.
As far as finding a doctor that knows what they are doing, I think I found him. I searched and searched before for good Gynecologists and believe it or not, the ones I saw previous to him were rude and didn't even bother trying to help me! All they did was hand me birth control and sent me on my way! He, however, studied all of my history, asked me so many questions about my medical history and exhausted every test he could to try and help me. I really like him and I hope that I found a really good one! I just have to wait and see, right?
Anyway, thank you all again!! You are all so kind and really made me happy with all of your replies and helpful information!! I am truly thankful and extremely grateful!

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/6/2011 12:05 AM (GMT -6)   
I found the Endometriosis Research Center (ERC) to be very helpful. One of the members helped me find a great surgeon in my area. The site used to be very active but it's been really slow lately. You can check the forum for doctors in your area in case you want a second opinion.

You can find the site at www.endocenter.org Near the bottom, you'll find a section for Patients, Family, and Friends. open that section (clink on ENTER) and click on Support Groups near the top. Go to the ERC Angel General Endo Forum.

I suggest you start at the New to Endometriosis section. You can search the forum for more info or you can post questions. It's moderated so all posts need approval, it can take a day or so for your post to show up and a few more days to get answers. You will find a lot of great information on this site.

Don't let it scare you. Remember that people in health support groups are usually having a difficult time with their illness and are usually worse off than your average person. When I first started researching endometriosis 8 years ago, I though my life was over and I'd be suffering forever.

My research helped me decide on the best treatment for me and I was able to find a great surgeon and avoid the medications and other options that I was not comfortable with. I still have pain but we think it is from adhesions rather than from endo.

Let us know how everything turns out for you.
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