endometriosis....

[g8rbeckie]

Hi girls!

about 6 years ago I was having fertility issues and saw a specialist, who immediately determined that I had endometriosis even though I didn't have the typical pain associated with the condition. So he did laparascopic surgery to "clean me up" inside and voila - 6 months later I was pregnant!

For the past few months I've been having pains - some that feel like bad cramps, some that come on as excruciating pains at random times. I saw the doctor and they did a ultrasound (or sonogram? I always get them confused!) and they saw cysts on my ovaries confirming that the endometriosis is back again.

the Dr. said that as soon as I decided the pain was bad enough he'd schedule surgery again to clean everything up. So here's my dilemma...

I still have 10 or more "fertile" years to go - which means that this crap will keep coming back! Anyone else out there going through something similar? I am going to have to get it cleaned up soon, as the pain is pretty bad now - but I'm wondering how many more times I'll have to do this?? anyone else out there dealing with this?

sorry for such a long post...and if you don't know what endometriosis is, here's a link.

 

[Emmy]

I had endometriosis before I had children. I think I had 4 surgeries for it between age 19 and 27. For me, pregnancy really improved my endo and I had my children so close together it has never had much of a chance to return. I am pregnant with twins right now and we will be done having babies after that. I wonder if it will return after 9 1/2 years of having babies. No real answers - just sharing my experience with it so far. If it came back for me with a vengeance I would consider a hysterectomy but then I'd be pretty confident that I was done with kids.

Are you taking any meds to slow the growth of it?

 

[g8rbeckie]

Thank you so much for sharing, Emmy! wow - 4 surgeries!

I had two kiddos in the 6 years between the first surgery and this one that I need to have now...my youngest son is 2.5 yrs old. Honestly - assumed it was all gone up until about 6 months ago when the pain started. And it is more painful this time.

What are the names of the drugs that can slow the growth of it? I would love to do a little on-line research! It is probably a great thing to discuss with my doc - once they get me cleaned up again to consider the use of drugs to keep it in check this time...

 

[Emmy]

When I was being treated for it before (and remember this was 10+ years ago) I took birth control pills for it. BC pills basically trick your body into thinking you are pregnant so the endo stays at bay or at minimum it slows the growth of scar tissue. There was another med as well but I never used it- I can't remember what it was. I would google "endometriosis treatment" and see what you come up with - babycenter.com even might be a good site to look at first.

I would definitely look into what the current treatments are - good luck!

 

[Stacey42]

I have endo. I've had it since I was in my late 20's. It fortunately did not interfere with my getting pregnant but it was painful. Occasionally screaming while curled up in a ball on the ground painful. It ws semiesponsive to birth control pills before I had kids, but they stopped working well after I had them. They talked about laproscopy & hysterectomy (since I was 40 and done with kids) but in the end we decided to try the Mirena IUD for 6 months and see what happened. If there was only some to no improvement we'd have laproscopy & wait & see.

The Mirena has been fabulous. It's been 10 months. I've had one attack of pain in all that time and maybe 3 periods. The ultrasounds have come back with no cysts on my ovaries at my 4 & 8 month checks, so I'm sticking with this for the next 4 years. About that time I will be looking at perimenopause so it's hard to say what will happen then.

 

[g8rbeckie]

I'm so glad to hear that!! I actually just had the Mirena IUD put in about two months ago, because I get migraines from birth control pills.

I still can't tell what effect it will have on my periods, but this second month I had bleeding for TEN DAYS! it was very light, but very annoying as I kept thinking it was over and it really wasn't. So hopefully once my body adjusts to it and my periods that it will slow the growth of this stuff...

how long did it take before the Mirena stopped your periods?

(thanks so much for sharing!! I hope this isn't too personal!!)

 

[Stacey42]

They stopped fairly quickly. I think the first month I had a really long light period but then nothing for 3 months, then just a couple days worth and then another 3-4 months before I had another short light one.

 

[Emmy]

That's interesting Stacey. I wonder if I should look into the Mirena for after my twins are born. My dh STILL hasn't made his vasectomy appointment so I fear it's going to fall in my hands to do something anyway.....

 

[hollyxann]

I have endo. I was diagnosed when I was 16. I've been on 3 different BC pills since being diagnosed. I've always had a hard time trying to regulate it and keep it under control. For me the pains vary from day to day. Some days I'm fine and will be that way for weeks and then BAM they hit me like a bus and I'll be that way for a week. The BC has helped but I've noticed that over time each pill has lost some of its effects.
Back in December 2007 I found out I was pregnant but later found out that I lost the baby in January. I had a D&C done to remove the baby and the stuff from the endo. I felt great for the year but I've recently noticed the pains becoming increasingly bad.
I have heard that your diet can effect the endo and obviously your lifestyle can to. I haven't done much research on either issue but I have briefly looked into it.

I hope someone here can help you out. Sorry I can't be of much help but I figured I'd share my story.

 

[scrapperjade]

I have endo too. It started right away in my early teens, but wasn't diagnosed until I was 16/17. Up until then, I was doped up on heavy drugs to take the edge off the pain. I would HATE when my friends would think I was being a baby or my Phys Ed teacher wouldn't let me have a day or two off for "my period". Yeah... you try having your insides feel like they are being stabbed with razor sharp knifes while being beaten in the stomach. Then tell me you feel like running laps.

Ahem. Anyways, apparently I have a fairly mild case, and I've never needed surgery to clean out any cysts. And amazingly I never had any trouble conceiving, even though I thought we would. Maybe we just fluked out? Having my DD last year really helped the pain though - its really amazing! I have very little pain now when I get my period - its such a change... I used to have to take Tylenol 1 along with Advil Liquidgels the second I felt "iffy" or they wouldn't kick in and I'd be in 3 days of pure agony.

What also helped me was the pill. My doctor put me on Lo-estrin when I was 16 to help. I took 3 packs in a row, then broke for a week. It didn't help much with the pain, but only getting my period 4-5 times a year was pretty good. There is no way I could have dealt with the pain 12 times a year!!

I hope you get a solution soon! I know how painful it is, even just having it mildly. I can only imagine the pain you must feel if you need surgeries!!

 

[BrattyMeg]

I too had endo and I used Lupron injections (not fun) but it helped soo much. Having kids has helped the most and surprisingly I had NO trouble getting pregnant. I had only 1 surgery before the lupron and knock on wood have had no major returning symptoms but have been on birth control on/off since my surgery

 

[lisabranka]

I too had endo and I used Lupron injections (not fun)

Lupron is the devil IMHO... I took one shot to stop my period so I could recover from SEVERE anemia in order to have a partial hysto. My ob/gyn doc recommended it but didn't tell me about all the side effects. I gained 30 pounds with no change in calorie intact or change in exercise.. almost 3 years later I'm still fighting those same 30 pounds that i gained... and I've tried it all! If I had it to do over again.. I'd never take the shot!