any relief from endo without getting hyst?

Hi, I just turned 30 and have been battling endo for years now (officially diagnosed in 2/2000). I had a Laporoscopy done in 2000 at which time the dr. said that the test were negative for endo but that she still believed I had endo. I was trying to get pregnate at the time so was willing to deal with the moderate pain I was having and refused all treatment for endo. However after not being able to get pregnate after 2 years I was refered to an endocrinologist who did another lap. in 9/2002 at which time the endo got gotten so bad that it had adhered my bowles to my back, as was all over my abdomenal cavity, I also had a chocolate cyct which was removed at that time. I was scared that the endo had gotten so bad over two years and gave up trying to concieve at the time (already was blessed with a beautiful daughter who was 5 at the time) and started trying any treatment that was available, I went through the Lupron, continuous b/c as well as the depo prevara (sorry sp) none of which did anything for me. At one point my doctor said I could either have a hyst or just deal with the pain. But I put off the hyst for years and just recently changed doctors and was given 3 options for treatment, 1. laporoscopy, 2. continuous b/c 3. hysterectomy, I was told that since endo is not curable that I needed to weigh the pros and cons of either a hyst and side effects or continuing to deal with daily endo pain and other problems for at least 20 more years until my body goes naturally into menopause. Sorry this is so long, but I would like to know if there is anyone out there that has gotten relief from endo pain with out having a hyst and if so what worked for you. KSB

Have you ever consulted with an endometriosis specialist? They generally have superior surgical and treatment skills when it comes to treating endometriosis. Especially if you have already had multiple surgeries, I would highly recommend traveling to one of the very well known specialists. Many of them will review your records before you make the trip so they can advise you if they would be able to help based on your current symptoms and past medical records.

When you have had your previous lapaorscopies, was the endometriosis excised? Have you tried pain management for the pain? Have any of your doctors been pelvic pain specialists?

I didn't have pain prior to my hysterectomy; my pain occured after the hysterectomy. A hysterectomy isn't a cure for endometriosis so I do think you are wise to seek options other than a hysterectomy.

Do weigh all of the pros and cons for each alternative as your doctor suggestested. You may also want to sit down with your family doctor and discuss all of the pros and cons as well. Your family doctor may have a different perspective on which option might be best for you based on your overall health. And/or your GP can refer you to additional specialists as needed.

We each will make different decisions based on our own circumstances. My best advice is to learn all you can about endometriosis, consult with the best specialists you can, weigh your pros and cons, and then do what is best for you! s

I agree with what Weiser has said. I had multile surgeries for endo. I had four before I saw a specialist. At the time I was so frustated and tired of being sick I was against seeing a specialist.

Looking back it bought me time (5 years). The doctor suggested a few herbs and natural progesterone cream. I thought he didn't know what to do for me But, I have to admit he did help me.

I had tried alot of different treatments prior too. BCP, depo provera, lupron, and danocrine.

When I started having alot of symptoms of endo and my gyn wouldn't help me I went and saw a specialist and he did my tah/bso.

I hope you can find something to help you.

Thank you for taking the time to respond. Yes the endo was excised. There wasn't much of anything during the first Lap, however the second time I was a mess, I felt like the 2nd doctor did a much better job considering how bad the endo was at the time, the pain did come back right away each time however I it took a while longer after the second surgery to get really bad again. My dr did put me on tylenol 3 with codien for and it took the edge off of the pain for awhile but it started making me sick. I haven't tried anything else as far as pain goes because I am afraid it will make my heart med not work. I will continue to look for a specalist. And I will talk to my doctor again when I go on Monday to get some questions answered.

I'm starting to sound like a broken record, but...

This past friday I had to have a lap to have an 8mm cyst removed along with my right ovary because that ovary is the most offensive in producing cysts. Anyhoo... I had a Mirena put in about a month ago. My doctor wasn't all that excited about using it to treat the endo but I refused lupron until he let me try this. I had a horrible month with it, but we had no idea of knowing if it was the IUD or the cyst that was causing all the problems. So, during my lap, my surgeon zapped all the endo that he could but said that my endo is SO MUCH BETTER. He even downgraded it to moderate from severe. He was so skeptical at first and didn't want to do it. Now look! It's making me better!

Like I said, I've only had it for a month, so I can't tell you that it's perfect. I have had abdominal pain but who knows what the cause of that was. I've not had any weight gain. My skin hasn't broken out. I've been slightly more cranky but I've also been in pain. Couldn't tell you about the effect on my sex drive because I was hurting for days after it was inserted and 3 days later, and ultrasound found the cyst. Dr. said no sex because of where the cyst was and he didn't want it to burst on me. News like that will kill anyone's sex drive. However, if I can slow down the building of adhesions (read: concrete) in my belly, most side effects will be totally worth it.

yes my sister i have found relief and actually cancelled my hyster scheduled for april 10. I'm 44 and have endo, ovarian cysts, fibroid tumors and a lupus like auto immune disease and had an ultra sound last week to confirm that the fibroids have shrunk and the cysts are almost gone as well and my last period was actually less painful. All my syptoms are improving and i attribute it to a simple change in my diet. I have found healing through nutrition. Because our hormones are already out of wack and that is the reason we have all these gyn problems i avoid additional hormones or hormone like substances that further confuse our own hormones and immune system. Some say to avoid meat and dairy all together but i do eat a little organic meat & dairy that doesn't have the known growth hormones and antibiotics and such given to cows. Avoid sugars they just feed these problems. Avoid packaged, processed foods especially foods with artifical colors & flavorings. Eat organic, fresh, whole foods. It is proven that omega 3 and flax seed are beneficial in gyn health so I try to eat omega 3 eggs and fish, but don't eat shell fish, a few times a week. I take 1-3 TBS of organic flax oil and a multi vit each day. Our foods lack the essential vit & minerals we need so supplements help us get them. I have found what i eat definetly decreases or increases my symptoms. It's not always easy to choose to eat right i must admit. So i put a reminder note on my fridge that says if it feeds your tumors why would you eat it? then don't! so i grab a banana instead of the ice cream. Some books that helped me were: healing endo through nutrition, and the maker's diet. Also what helped me to continue healing through nutrition instead of having the hyster was our sisters openness and honesty. I encourage you to read what our sisters have said on the post op forum. I found their post op posts very eye opening and that forum helped me make my decision not to have the hyster. Sister I hope you find relief through a simple diet change, or another alternative or even the hyster. Just follow your heart.