Endometriosis Treatment?

[disfan07]

I was diagnosed with endometriosis 1 1/2 weeks ago. My GYN considers it to be a moderate case. She was able to get rid of most of it during surgery so now we are onto just trying to manage the pain and manage it coming back. In addition, I also have Polycystic Ovarian Syndrome.

I have been on birth control pills since I was 12 (about 9 years). They work pretty well for my cysts (I now only get 2 or 3 a year instead of with every cycle) but they are not working for my endometriosis.

I know that a lot of people on this board suffer from endo. as well so I was curious as to whst you guys do for pain and treatment.

Also, I cannot take any OTC pain meds besides tylenol b/c eveyrthing else interacts with one of my other meds. The problem with that is that tylenol does not always work. Before the surgery, I had been placed on percocet for the pain since we had no other options.

I am seeing my GYN again in 2 1/2 weeks to discuss this (she is out of town right now) but I was just curious at to other peoples expereinces.

 

[usnuzuloose]

I had it very bad. I ended up getting a full hysterectomy. I was so greatful.

 

[Denine]

I take birth control 365 days a year. I have for probably 6 years now. No period, no pain.

 

[mmorrison]

Please please please don't take lupron. I was told this over and over by endo suffers but went on the advise of my doctor. Less than a year after my first surgery I was in surgery again. What started as a mild/moderate case turned into a severe case in the 9 months I was on lupron. Please please don't take it. I won't even begin to talk about what the lupron did to my body. I had broken bones and weight gain and that's just the beginning!!!! Although I liked my gyno who diagnosed me I won't go back, there are doctors that specialize in endo. I'm on my phone so I can't see where you are from but please consider seeing one. I went to a fabulous doctor in the atlanta area and I couldn't have been more impressed. I highly recommend seeing a specialist. There is also an endo diet that I will be starting on, after my post op appt. If you have any questions please pm me. I know first hand how awful this can be and how if can affect your life.

 

[Darcy03231]

A very good friend of mine (actually two) suffered with it for years. They both ended up having complete hysterectomies. Once they recovered both said they'd wished they'd done it sooner.

 

[Daisy&Max]

I was dxed with Endo when I was 23 with a case so severe my doc wanted to put my case in a medical magazine because he hadn't seen one so severe at such a young age. I've had 3 different endo laproscopic surgeries to clean out the endo and remove cysts.

I'll be the other side of the Lupron treatment. I've been on Depo Lupron three different times and never had any negative side effects other than having hot flashes. I felt the best I"ve ever felt when I was on the Lupron. I didn't have pain, no cramps, and very little weight gain. I wanted to stay on it and never have to go off of it. Each time I was on it for 6 months I would have another year pain free.

I"m on Depo provera right now so I don't have a period and that makes me pain free, but on it I've had the weight gain. My hysterectomy is schedule for April. I can't wait.

Good luck to you OP.

daisy

 

[tlbwriter]

I took two rounds of Lupron (not for endo but for other issues) and had absolutely no problems. It really works well for some women.

 

[Feralpeg]

DD had surgery last August due to endometriosis. She had been on birth control pills since she was 14 for her complexion. She started having problems with high blood pressure so the doctor had her stop the birth control. After a few months off the birth control, she was in great pain due to the endometriosis.

They were able to remove the majority of it during surgery. Since she cannot go back on a traditional birth control pill due to the high blood pressure issues, he put her on progesterone. They only problem with this is fatigue and her complexion has become much worse. She is due to see him again in February.

 

[Mom loves Disney]

I had surgery in April of this year to remove endo. I lost one ovary, tube and most of the other ovary due to endometriomas. It also had almost put a hole in my colon. I am now on bc pills nonstop and have been doing ok since and pray it continues. I wish you the best as it is a long journey.

 

[clutter]

I've been on bcps 365 days a year for almost 25 years (except the time off to have my dd). My dr had me come off to see if I'm in menopause. Both of us hope that I can get thru it without a hysterctomy. And yes, I was one that needed percocet for my periods because of the pain due to the involvement of my colon. So far, so good, but it's only been a few months. (And yes, my blood pressure has gone down since coming off.)

 

[Blue Skies]

I had it very bad. I ended up getting a full hysterectomy. I was so greatful.

Same here... was the best decision I made.

 

[quentina]

I had it very bad. I ended up getting a full hysterectomy. I was so greatful.

Me also however; I had amazing success with Lupron. Many people swear it is the spawn of satan however; I LOVED it. I had zero side effects and no pain while on it. My advice is to be open to options and discuss them all in depth with DR.

It is a miserable thing to deal with, I hope you get relief.

 

[TerriP]

I had it very bad. I ended up getting a full hysterectomy. I was so greatful.

Same here...almost 20 years on bc to treat my endo (starting at age 12) and then a hyst at 31 (kept my ovaries, though, since I was so young). Best best BEST thing I have done. My life is finally MY LIFE again and not ruled by pain.

BEST of luck to you....I hope you find a good doctor and develop a plan that works for you.

 

[Beastlover]

Wow, that is painful!!! I guess I got off easy? I had endo in my c-section scar. A surgeon went in and cut it out, and put some reinforcement material behind the scar. (Kevlar I think!! Yes, I am now bulletproof!!) I haven't had any issues since. I should probably knock on wood!!

I will add this: I do believe regular exercise helps. Just my thought.

I hope you do find some relief for this, daily pain and discomfort is horrible!!

 

[disfan07]

Thanks everyone. A hysterectomy is definitley a loooooonnnnng way away as a treatment option. Probably at least another 15 years or so depending on when I have kids.

I have done the 365 days of birth control pills and I would get breakthrough bleeding all the time. We tried different BCPs and it happened with all of them. My GYN did mention trying Depo provera to see if maybe that works better than the pills.

Lupron has been mentioned. It was actually mentioned about 5 months ago when we were first scheduling the surgery. From what I have read about it, that is definitely something that I cant go by other peoples experince with. This message board proves it. Some people love it, some hate it.

It was the same thing with my methotrexate treatment. Some people (including some doctors) cant believe I am on that stuff but it works wonders for me so I am staying on it.

I definitely trust my GYN. She is not one that pushes and tries to pressure me into trying something I dont want.

For me, I dont usually respond to the most common or usual treatments. I am on the extreme or rare treatments for everything that I have (highest doses, case study drugs, end-line treatment drugs, etc) so I dont expect this to be a simple treatment

 

[left210]

Check out www.centerforendo.com. I traveled 8 hours each way to treat there and they are awesome. I had stage 4 endo and they completely removed it all. It was everywhere - bowel, bladder, culdesac, ovaries, etc. I also had fibroids, cysts, etc. That was 3 years ago. I was told to have a hysterectomy by my local gyn but we wanted to have more children. Thank goodness we didnt do that because we have a beautiful boy who is 2 now. I had laps by local docs but they would not remove it on bowel and bladder because they were afraid they would puncture or cause further problems. I also had adenomyosis but the only cure for that is removal of uterus so we did not do that 3 years ago but I went back for that just 3 weeks ago and none of the endo came back. The reason is they excise all of the endo. Most gyns just burn off the surface layer so it is never fully removed and just grows back to the surface whereas Dr. Albee and Sinervo excise it completely. You can mail your records to them and they call you personally to discuss your case. They are absolutely wonderful. I know I sound like an advertisement for them but they have just been wonderful. You can PM me if you have any other questions. They also have a facebook page now too.

 

[PRINCESS VIJA]

You guys are scaring me! I had been on BCP for the endo and it worked great!!! No PAIN! BUT then I ended up with blood clots in August, emergency surgery, ICU and intubated, almost died. They found out that I have a genetic predisposition to clotting so no more BCP's. Oh my goodness, after that I have now an "attack" of endo for about 5 days before my period and it is so painful, it knocks me out for 1 hour intervals. It is only for about 5 days in the cycle. so I have been told that my options are deal with the pain, or have my ovaries out. I just don't know what to do. I don't want any surgery now, as I am on coumadin and that is a mess to deal with, nor do I want to go into early menopause. this just stinks!

OP, good luck on your journey and your decison

 

[left210]

You guys are scaring me! I had been on BCP for the endo and it worked great!!! No PAIN! BUT then I ended up with blood clots in August, emergency surgery, ICU and intubated, almost died. They found out that I have a genetic predisposition to clotting so no more BCP's. Oh my goodness, after that I have now an "attack" of endo for about 5 days before my period and it is so painful, it knocks me out for 1 hour intervals. It is only for about 5 days in the cycle. so I have been told that my options are deal with the pain, or have my ovaries out. I just don't know what to do. I don't want any surgery now, as I am on coumadin and that is a mess to deal with, nor do I want to go into early menopause. this just stinks!

OP, good luck on your journey and your decison

Please talk with an endo specialist or centerforendo before having your ovaries removed. That is not always the answer. You can have a complete hysterectomy and still have endo if it is on other organs, parts of body, etc. I know you do not want to have surgery right now but at some point it will need to be completely excised (cut out) and not burned off to get rid of it.

 

[SookieStackhouse]

You guys are scaring me! I had been on BCP for the endo and it worked great!!! No PAIN! BUT then I ended up with blood clots in August, emergency surgery, ICU and intubated, almost died. They found out that I have a genetic predisposition to clotting so no more BCP's. Oh my goodness, after that I have now an "attack" of endo for about 5 days before my period and it is so painful, it knocks me out for 1 hour intervals. It is only for about 5 days in the cycle. so I have been told that my options are deal with the pain, or have my ovaries out. I just don't know what to do. I don't want any surgery now, as I am on coumadin and that is a mess to deal with, nor do I want to go into early menopause. this just stinks!

OP, good luck on your journey and your decison

That is very frightening!

 

[MaggieMoo'sMom]

I started having problems at 13 with cysts and had one removed at 14. I was diagnosed with endometriosis at 23 through surgery and had no problems after they burned it out. I immediately got pregnant and had my daughter. I had my 3rd surgery at 28, last year, where a specialist removed a great deal of scar tissue and more endometriosis.

I agree to have a specialist do your surgery. I went to a fertility doc who was AMAZING!!! They ran dye through my tubes to make sure all was well. The best treatment I have had was the doc burning it off. It brings such relief. I have felt the pain was gone as I was coming to from the surgery both times. I say if I am hurtIng that bad, BURN, BABY, BURN!!!!