Just diagnosed with endometriosis

[Denine]

As some of you may remember, I had surgery last week to find out if I have endo. I just found out on Tuesday, from my doc, that I do. It is not a surprise, it has been suspected for some time. I just kept putting off having the surgery.
Anyway, I am on to looking for a treatment. Endo sufferers, what have you tried? I won't take Lupron or any drug like it, so I have fewer options.
I go back on Monday for my follow-up and will discuss the options then.
Thanks in advance!

 

[olena]

**HUGS** to you. This plagues many women in my family and I suspect I will not be spared. Discuss the options with your Doc. Most times, my relatives opted for hysterectomies, since they had their children. I am also curious about the options.

 

[Serena]

I don't have any advice, I just wanted to offer a {{hug}}.

There was a thread about it not that long ago, so I know there are people that would be able to help you.

 

[tc]

I am sorry, {{{{HUGS}}}} to you. My sister had this and had a hysterectomy, but she had other complications. I hope you find the treatment you need. Keep us posted.

 

[FairyGF]

I have a very good friend who has "lived" with this, mostly symptom free until she had difficulty getting pregnant. She was very lucky, has a son, and only recently been experiencing any discomfort. Good luck to you, get as much information as you can!

 

[PRINCESS VIJA]

For the longest time I had abdominal pain just prior to my TOM,We weren't sure if it was irritable bowel syndrome or a whole other list of problems. It was very baffling to my MD, we tried many different things, and from research and process of elimination we felt it might be endometriosis that has adhered to the small bowel. Well, I was put on BCP's and it has made a WORLD of difference! NO MORE PAIN! Not sure what the future holds for me though, we opted this route because I still want more children. But for now, it is an answer. Good luck, and research, research, research!

 

[TerriP]

Sorry to hear this, Denine...I had hoped this wouldn't be the case for you.

I was diagnosed at 16 and, since I'm still only 26 a hysterectomy is still not an option for me. I manage mine with BCP use...take only the estrogen pills, not the placebos, continuously. I have a cycle about twice a year. The pain is still severe so I do have prescription pain relievers when I need them...but I do NOT like the way I feel on them so if DH sees me take one he knows it's serious.

I also have a "lap" every few years to study the progress of my disease and remove any large growths that are causing me trouble. DH and I have decided against having children so once I get older, my gyno will do a hysterectomy for me....but I really want to put that off as long as I can.

I'm glad you decided against Lupron...it's a personal decision and I also decided against it. Best of luck to you...I do hope you find YOUR avenue to better health.

 

[luvwinnie]

had symptoms since 15. I agree with you: DO NOT TAKE LUPRON. I call it the "evil drug". I took it about 10 years ago. I've had 2 laps and I was on Depo-Provera but it made me break out. Now I've been on the Pill for years and I'm doing great. I also don't want children, so I'm not worried about the fertility aspects.
I wish you all the best! Feel free to PM me anytime.

Please be aware that having endo can put women at higher risk for autoimmune disorders, such as lupus (which I MIGHT have), MS, etc.

 

[catsrule]

Well, I had a very bad case of this and had to be 'cleaned out' every year....not just a lap but cut open and have organs cleaned out. I had a hysterecomy because I was tired of surgery every year. It really depends on the severity of it. If it isn't that bad, you can live with it for years.

 

[Dopeygirl]

We need to make a decision on what we want the next step to be for my treatment, so I've been doing a lot of research. I had my lapo. last May and have been on continual birth control pills (Ortho's equivalent to Lo-Estrin--I forget the name) almost the entire time. I've used Celebrex and liked it. I ran out of my prescription but will get it refilled when I go back next week. A friend tried Celebrex and it didn't help her at all. I, too, don't want to go with Lupron or any of the other drugs I've seen recommended. The possible side effects are scary. But the pain is now worse than it was before my surgery, so we're going to have to make some sort. We do want to have chidlren, so that is a big concern for us.

Good luck with whatever you decide to on!

 

[Saffron]

No advice, just wanted to tell you that I'm thinking about you.

 

[helenabear]

No advice here, but I wanted to let you know that you are in my thoughts. Best of luck to you with dealing with this {{hugs}}

 

[Boots]

No advice, but a nice big {{{{{{{HUG}}}}}}}.

 

[Dan Murphy]

Just offering my best wishes to you, Denine, and to all the other ladies on this thread, and the DIS, who are suffering likewise. My prayers are for you all.

 

[Laurabearz]

(((((((((((((((Denine)))))))))))))))) I can only offer a hug and prayers......

Please keep us posted on any information you find.

 

[believe]

I haven't personally experienced it, but my sister has. She had several laser surgeries to remove a lot of it, then it came to the point were she needed to decide on whether to have a hysterectomy (sp?) or not. She had the laser surgery once more and decided to get pregnant right after the surgery. The pregnancy reversed the endometriosis. Her daughter is almost 6 and she has not had any recurrence.

 

[Kitty 34]

{{{{{HUGS}}}}} and a PM on their way to you, Denine.

 

[Boo'sMom]

I've suffered with this for several years....but never knew it because I was always on BCP.
When I tried to get PG with my second, and went off BCP, the symptoms were incredibly worse.
Had lap done and got PG within 3 mos.

Went back onto BCP after DS2 was born and figured that would be the way of life for me forever....HOWEVER....I've never been really good at remembering BCP...and now....we have "Boo"....so in short...I'm trying to say....hang in there, there are a lot of different options avialable to you...and do what is right for you....and NEVER let them tell you NEVER....


Prayers and positive thoughts.

Oh yeah...and as a side note, since my surgery, I've been off BCP and have had only mild symptoms.

 

[clutter]

Absolutely, BCpills. Stop those cycles! I was one of the "test" cases... went for nine years without having a cycle (after the last one put me in the hospital). It stabilized my endo, and of course, no cycles = no pain problems. I did lupron - twice - before I tried to get pg, and it is an evil drug that should be used only in those circumstances. And the benefits of it don't last unless you do get pregnant. I'm back on BCP's and my doc is hoping that they will carry me through the big-M without the big-H.

Not bad for someone who was diagnosed in her early 20's when hysterectomy was the only option.

Also, see if you can find some of the research that's been done lately (recently there was an article in the Wall Street Journal) about BCP's. Current research is showing benefits to reducing the number of cycles, and they are developing an 8 day pill.

One last thought. If you have some mood swings on certain BCP's try others. I was nutso on the generic equivalent of my normal pill. And some brands drive those around me to homicide!

Good luck. Dopeygirl, I was told I needed IVF to ever get pg. Basically, most docs gave up on me. Took a couple surgeries and a couple rounds of lupron, but I've got me a 5 yo dd to prove them wrong. Have them do tests to check your tubes, if they're clear and remain clear of the adhesions (the only place I don't have any), you may be ok.

 

[TeresaNJ]

Denine, coincidentally, I just had a total hysterectomy due to severe endometriosis. I was diagnosed ten years ago, at age 35, after being told by several docs that I had irritable bowel sydrome and going through multiple GI tests to prove that wasn't it. Finally, after having a laparoscopy, I was correctly diagnosed. Initially, I was put on Lupron for six months, then the BCP, and all seemed to be going pretty well. I went off the pill after several years, and the endo returned with a vengeance. Since then I've had three laparoscopies, been on Lupron again for another six month cycle, and since remarrying tried for two years to get pregnant, with obviously, no success. The endometriosis had caused my uterus to become adhesed to my colon, and I had cycts on both ovaries, one of which grew to 8cm on my left ovary(actually grew into the ovary) and developed fibroids. I had so many trans******l ultrasounds I think I could have done it myself and read it accurately!! Anyway, you're still very young, so hopefully you'll be able to control it with the BCP for awhile, but unfortunately for some of us, we end up with a hysterectomy anyway. Having relief from the pain though, was worth it. Luckily, I had my three children before I developed endo, which I'm told is very uncommon. Good luck in your decision.