Endometriosis

[Mandy_in_NC]

Does anybody have an experience with this? I have been having some problems and I went to the Gyn yesterday and he said that he thinks it is endometriosis and he wants to do Laparoscopy and look around to see if he sees any growth. He also wants to go ahead and do a D&C since I will already be out cold. So I go October the 12th to have out patient surgery. He also said that if he finds anything while he is in there that he will go ahead and remove what he can. He also said that there may be a chance that once he looks around that I may need a hysterectomy and if that is the case that it would be a seperate surgery. So any info that you guys have would be helpful. Thanks
Mandy_in_NC

 

[Nancy]

I have had endometriosis, caused my infertility probelms way back when. I had the exploratory lap. done but they didn't do a D & C at that time. At that time they found scarring and ovarian cysts. I would be very leary of signing off on having him/her remove stuff without your knowledge. What else is he/she looking for? Fibroids maybe? I had major surgery to have my kids. Thye had to go in and remove all the scar tissue that had formed. It had pulled a lot of things out of place in side me, including tubes and ovaries. I never had a hysterectomy and this is now 19 years later. I have had some problems since then that required a D & C (I've had 2) but he has never mentioned the H word to me at all.

My surgery to remove the scarring gave me a bikini line incision that runs from hip bone to hip bone.

 

[Mandy_in_NC]

The Dr said that if he found any growths while he was in there he would remove what he could. If it is determined that i need a histo unless it was an emergency it would be a whole diffrent surgery.

 

[kmp1191]

My oldest sister had/has endometreosis....pretty bad. She had to go on birth control pills when she was 16/17 because she never got her period. She also was not able to have children because of it. She had SEVERAL laproscopic procedures to remove it, but it always came back. She had to have a hysterectomy when she was 28. She went to 6 different doctors and they all said the same thing. It was an extremly bad case.
Get a second opinion before you do anything. I have a slight case of it, but had 2 children and no problems. I know several people that have it and did not require a histo. Also, I would not let him be the deciding factor on if it is an emergency to do it. I would definately get a second opinion.

Good luck!!

 

[FreshTressa]

Does anybody have an experience with this? I have been having some problems and I went to the Gyn yesterday and he said that he thinks it is endometriosis and he wants to do Laparoscopy and look around to see if he sees any growth. He also wants to go ahead and do a D&C since I will already be out cold. So I go October the 12th to have out patient surgery. He also said that if he finds anything while he is in there that he will go ahead and remove what he can. He also said that there may be a chance that once he looks around that I may need a hysterectomy and if that is the case that it would be a seperate surgery. So any info that you guys have would be helpful. Thanks
Mandy_in_NC

No help, but I'm having surgery on October 12th too, for a novasure ablation. I have adenomyosis. I endometriosis too, but it is not painful, so they are not going to treat me for it yet.

 

[ceiligh1]

I had the lap. surgery for endo. diagnosis about 7 years ago. At the time I used this site to answer a lot of my questions. http://www.endometriosisassn.org/supportgroups.php

Several things I did and would do if faced with this again. Sit down with my doctor and say specificly what I would be ok with him doing in the surgery and what I would not. For example if your ovary is involved do you want him to go ahead and remove it or do you want to come out of it and decide ect. Also what treatment options are available to you, rehab ect. I would also get into one of the support groups for endo in your area, they might be able to tell you somethings about how your doctor treats endo patients.

As far as the lap it only took me a week or so to get back to normal however it took my stomach muscles a lot longer to recover. A couple tips for the surgery day itself is to take loose clothing with you and a pillow to hug on the way home. Stock up on movies, as long as you dont have to laugh to much at them, and give yourself time to recover.

 

[apirateslifeforme]

I have it. I had major surgery to remove melon-sized ovarian cyst and that's when the doctor was able to diagnose it. This particular cyst had pushed all of my organs out of the way and done some other damage, and she also found two smaller cysts on the other side. I got my first period when I was 11 and they were always excruciatingly painful. I couldn't move for at least 2 days. I took every painkiller known to man and I still couldn't move. I get blood clots the size of my palm. And I'd bleed for 10 days straight. Interestingly, as I got older, the pain started to ease up, so by the time I had my surgery (at age 26), I really didn't have such bad cramping. My doctor had me sign off on a hysterectomy, but that was ONLY if I had cancer (which she honestly thought I did - that was scarier than anything). She was able to remove only the cysts and "clean things up a bit."

My cousin also has it. She had the D&C and immediately got pregnant!

 

[luvwinnie]

Yes, I have it. I've had 2 laps, but for years now the Pill has kept my pain under control. I dread the day I have to come off it. PM me anytime.

P.S. If he suggests Lupron, let me know. I had horrible experiences with this med. NOt everyone does, but I would want you to know of the risks.

 

[TerriP]

I'm going in on October 13th for my third Lap surgery in the 15 years since I was diagnosed with endo. The surgery itself is not bad at all. The suggestions to wear loose clothes and take a pillow to hug are very good advice. Also, at least for me, laying down helps the pain a lot. When you sit up the gas they use to expand your stomach moves up into your shoulders...OUCH! I always feel a lot better laying down than sitting up for at leat a couple days after the surgery.

My endo tends to create lesions that eventually "stick" my organs together. Right now several of my "female parts" (as my young nephew calls them!) are stuck together and are stuck to my body wall. So the surgery next month is to remove the lesions that are causing this. I signed a consent form for the laparoscopy and also signed one for a laparotomy (where they open the lower abdomen) just in case they need to be able to open me to better remove the lesions. BUT, I did not agree to the removal of any organs...*I* will make that decision after we have all the info. I would never leave that decision up to my doctor.

Luvwinnie, can you tell me about your experience with Lupron (pm is fine if you're more comfortable that way)? My doctor mentioned Lupron for the first time ever during our last visit and I don't know anything about it. I've heard of it before, but I need to get more info on it before I agree to use it.

 

[kydisneyfans]

My wife had the laparoscopy done just after Christmas last year. Things improved for about 6 weeks and went downhill quickly after that. Her hysterectomy was in April. At least we were blessed with one child.

 

[AZKathy]

Got endometriosis. Had operative laparoscopy and had all the endometriosis removed via laser (that is what they did back then) and took care of all the adhesions caused by it. Could only get pregnant once which ended in miscarriage.

 

[Fan2CSkr]

I was diagnosed with endometriosis years ago after constant pain that increased. After having an exploratory laparoscopy it was confirmed. They removed adhesions at that time. Following this procedure I was put on Synarel for 6-8 months. It worked fo me! Have not had any problems since and was finally able to get pregnant after years of trying.

Ask your Doc about Synarel. Also, I went to endometriosis specialists in Manhattan after being treated by my gyno for years and still having no relief.
http://www.mayoclinic.com/health/drug-information/DR202646

http://www.endometriosisassn.org/index.html

 

[Mom2Ashli]

I was diagnosed with endometriosis two years ago and did a full research study for a new drug that was supposed to get passed thru the FDA.
My situation was so bad that she was not able to remove any of it during the laparoscopy and the next step would be a hysterectomy which I am just not ready for.

I also received another call for them wanting me to try another drug study.

 

[tracy51]

I was 15 when my doctor first thought I had endometrosis. I started getting extremely painful periods. They ran all types of tests, including an ultrasound, and determined that was probably what I had. It was decided to place me on birth control pills and see if that helped before doing a laparoscopy. Unfortunately, birth control pills tend to trigger migraines in me. So that was fun - not. They finally did a laparoscopy in the fall of 1988 when I was 18 after I would wake up screaming in my dorm room from being in so much pain. The doctor found some scarring, cleaned it up. Told me it was all fixed. Put me on a new drug that had just come out of the 'experimental' stage (this is what my mom was told, most of the doctors conversations were with her and not me ) called Lupron - I was to be on it for about 9 months. He said I was cured. It was nothing to worry about, just keep it in the back of my mind. I might have trouble getting pregnant, but I was "cured" and if I did manage to get pregnant well, then I'd definately never have to worry about it again.

Flash forward several years. My DD is about 3 1/2 and they have to wheel me out of my office on a stretcher because I'm in so much pain I can't move. Turns out I had a pelvic infection. That led me to a new OB/GYN. One who turns out specialized in infertility and it quite knowledgeable with endometrioisis. That's when I learned that there was no "cure". And that's why things were still so painful. I've been fortunate in that this new doctor really talked to me about things. We played around with BC pills to find one that was the right strength to stop the pain during that time but didn't give me migraines. *Knock on wood* I haven't needed to have any more surgeries. I still have about 1 day a month that I don't want to get out of bed, but not so bad that I'm ready to have surgery again - which is what will be the next step if it gets that bad again. I'd always planned on my DD being an only so I'm not sure if I could get pregnant or not.

It also wasn't until years later that I discovered things about Lupron. Suddenly some problems I had during that time made sense.

Sorry for being so long winded ( I tend to do that ) But I wanted to share my story. Things have changed a lot since I was first diagnonsed but I wanted to share what I went through and tell the OP to ask as many questions has she can think of. Make your doctor talk to you and make sure you understand what they are saying. Not sure if it was because I was so young or if it was just the doctor, but so much misinformation was passed on to me because of how the communication went.

Good luck and

 

[Jenn Lynn]

My sister has endometriosis. She is 27. She just found out that her uterus is 5 times the normal size due to the scarring and such. She is currently on progesterone to try and get it under control. Then she will go on the pill. If it does not work she will need a hysterectomy. She has been blessed with two kids.

 

[Faerie]

I was diagnosed in November of 04 after a operative laparoscopy. My GYN tried to remove all of the endometriosis removed with a laser but was not able to.

I've had horrible periods since I was 13 (now 27) and it took a long time to diagnosis. I was put on the pill at 15.

After my surgery things didn't improve one bit so I went to a reproductive endocrinologists who put me on a nasal spray to induce menopause which was awful so I'm back on the pill. I'm not married yet but am concerned about having kids as I've been told I have endo tissue around my ovaries and that I’ll be at higher risk for a tubal pregnancy.

 

[clutter]

Ok ladies, I've been battling endo since I was diagnosed in 1981. I've done them all. I did the hormones that were really testesterone, I've done Lupron. I've had two laparoscopies, and a laparotomy. I've managed to avoid a hysterectomy.

Back in 1984, my doctor simply did not want to do the big H on such a young woman. But the pain from my periods was just too intense. I did the hormone therapy above, but we kind of knew that it would only last a matter of months before the pain came back. (I have adhesions on my bowels, we're talking pain.)

Anyway, my doctor said "why don't you just go on birth control pills and don't stop; don't get a period." The point of Lupron and Danocrine is to supress your period. So we tried it with bcps. I supressed my cycle for 9 years, then I tried a break from the pill. I went three months off completely, then back on in the normal fashion. In less than a year, my periods went from normal to double-dose of percocet. Back to supression.

Surprisingly, I was able to get pregnant without too much difficulty (if you don't count two surgeries and two rounds of Lupron as difficult, lol.)

After I had my daughter, my doctor (a different one by now) and I decided to supress again. My periods were ok, but we knew that it was only a matter of time, and then where did we go. Recently, she said to me that I was the last person she thought might get through menopause intact, but it looked like I was heading that way.

So I'm saying that there are less invasive options. I've done Lupron, twice, and I'll never go that route again. It takes away your estrogen, and estrogen is what makes us 'nice'. I was lucky I had any friends left after that. A friend also was on it, and she lost a valued employee when they'd heard she'd be going on Lupron again. For both of us, it was personality altering. For her, she had the added benefit of horrendous hot flashes.

Anyway, for anyone suffering from endo, I'd talk to your doc about supression. That's all that Lupron or pregnancy do that makes it work, supress your cycle. And if you pain is exclusive to your period or ovulation, it goes away. Sometimes, I think that I was one of the women that helped doctors create Seasonale!

 

[tracy51]

So I'm saying that there are less invasive options. I've done Lupron, twice, and I'll never go that route again. It takes away your estrogen, and estrogen is what makes us 'nice'. I was lucky I had any friends left after that. A friend also was on it, and she lost a valued employee when they'd heard she'd be going on Lupron again. For both of us, it was personality altering. For her, she had the added benefit of horrendous hot flashes.

Anyway, for anyone suffering from endo, I'd talk to your doc about supression. That's all that Lupron or pregnancy do that makes it work, supress your cycle. And if you pain is exclusive to your period or ovulation, it goes away. Sometimes, I think that I was one of the women that helped doctors create Seasonale!

I really wished I had know that about Lupron when I took it. Imagine being a freshman in college, 5 hours from home going thru midterms and finals on that stuff. Giving myself shots every day wasn't a problem. Turning into a complete other person was!

Hehe, I think you may be right about being someone who gave doctors the idea for Seasonale

 

[TerriP]

I've done Lupron, twice, and I'll never go that route again. It takes away your estrogen, and estrogen is what makes us 'nice'. I was lucky I had any friends left after that. A friend also was on it, and she lost a valued employee when they'd heard she'd be going on Lupron again. For both of us, it was personality altering. For her, she had the added benefit of horrendous hot flashes.

Oh no! My first thought after reading this is "I'm not very nice now...I can't take this stuff and get WORSE!".

I've suppressed my period with BC pills since I was 15 (so, for 16 years) and the endo continues to get worse. If the only thing Lupron does is suppress your period, why is it any better than taking the pill?

THANK YOU for sharing your experienc with Lupron. You've given me more important questions to ask my doctor.

 

[luckywife]

I had endometriosis-dealt with it since I was probably 14 years old. Back in Jan. 04 I had my left ovary removed because of a recurring cyst. I tried Lurpon for the endo, which didn't really help me that much. Long story short-I had a full hysterectomy in March.

If there is a choice in the matter, it is a very personal decision. For me, it was one of the best things I've ever done. Someone else may disagree with that. Even though I'm only 31 DH and I already have 2 kids and knew we didn't want anymore.

Good luck-hopefully your endo won't require a hysterectomy.