Treating endometriosis?

[Stayseeliz]

I was told I probably had endometriosis after an endomtetrial biopsy 5 years ago. Since I was newly pregnant they said not to worry about it until it bothered me. Two kids and a tubal ligation later it's bothering me. I'm having super heavy cycles and incredibly intense pain at random times. It's horrible shooting/stabbing pain but it only lasts an hour or two a few times a month then it's gone. It's annoying and painful but it doesn't last long.

 

I wound up in the ER last night with the pain. They ruled out cysts or anything more serious and said it was probably the endo.

 

Since I am self pay I'm wondering how helpful the surgeries, etc are. It seems like no one knows what causes it so the main goal is pain management. Should I just do that on my own? We can't afford thousands of dollars for them to hand me a pain pill. I'd like to avoid birth control pills. What are my options??

[lovinmomma]

If you don't want to do BC most of your options rely on diet (which is huge) and herbal remedies. I have had the surgery and it allowed me to get pregnant, but after 3 children it's back again. If I"m not pregnant it comes back.

[NotSoObvious]

Surgery. I highly suggest you have it. The endo can grow around other organs and cause major internal problems. Surgery is the ONLY way to 100% diagnose it and once they are in there, they can burn off what they see.

 

I was down and out for about a week. It's outpatient surgery.

 

For a small percentage of women, it doesn't help with pain. Unfortunately, this is me. Apparently they think it can live in your tissue where they can't see it or burn it off. It was all very interesting.

 

My doctor said birth control is the most effective way of slowing the growth and that there is NO cure. I have an awesome endocrinologist who is heavily involved in researching this area.

 

Oh, and my ob/gyn would NOT do the surgery because she didn't think I had it. Thank goodness I found a good doctor. Your normal doctor probably doesn't see many patients with this, where an endocrinologist sees lots.

 

Count your blessings you were able to have children at all. :grouphug::grouphug:

 

Good luck!

[Katy]

I've been diagnosed with endo & ovarian cysts.

 

When things get painful for me, I go on a low-estrogen diet I found at the physician's committee for responsible medicine website. To sum up: It's vegan, fat free, and sugar free. I last 3 weeks if I'm lucky because I have no self-discipline when it comes to dairy (Also, I'm allergic to wheat, so the diet basically means eating tons of fruits and veggies and brown rice and beans and little else). Even 3 weeks makes a huge difference in pain levels for years.

 

The reasoning is that any fat consumption triggers estrogen to be released, dairy and animal products contain estrogen, sugar affects insulin which affects estrogen. Oh, and I think you're supposed to eat organic if possible too, because pesticides can act as synthetic estrogen. But I couldn't afford it the last time so I ignored that part.

 

I've recently learned vitamin B6 has a huge impact on estrogen balance too. Try a vegan diet for one month, and take a B complex supplement too for a month. See if it doesn't make a massive difference in your next cycle. If it doesn't, drop it. If it does, only you can decide how strict you want to be.

[southcarolinamom]

After 2 laparoscopic surgeries I ended up with a total hysterectomy. My insides were covered with endometrial adhesions. It is very painful! I'm so sorry you are hurting. It was about 10 years from the time of my first laparoscopy until I had the hysterectomy.

 

Best.thing.ever. No more pain, no more periods.

[NotSoObvious]

After 2 laparoscopic surgeries I ended up with a total hysterectomy. My insides were covered with endometrial adhesions. It is very painful! I'm so sorry you are hurting. It was about 10 years from the time of my first laparoscopy until I had the hysterectomy.

 

Best.thing.ever. No more pain, no more periods.

 

Not to hijack...

How old do you have to be to have that surgery?

I'm waiting patiently!

[NotSoObvious]

I've been diagnosed with endo & ovarian cysts.

 

When things get painful for me, I go on a low-estrogen diet I found at the physician's committee for responsible medicine website. To sum up: It's vegan, fat free, and sugar free. I last 3 weeks if I'm lucky because I have no self-discipline when it comes to dairy (Also, I'm allergic to wheat, so the diet basically means eating tons of fruits and veggies and brown rice and beans and little else). Even 3 weeks makes a huge difference in pain levels for years.

 

The reasoning is that any fat consumption triggers estrogen to be released, dairy and animal products contain estrogen, sugar affects insulin which affects estrogen. Oh, and I think you're supposed to eat organic if possible too, because pesticides can act as synthetic estrogen. But I couldn't afford it the last time so I ignored that part.

 

I've recently learned vitamin B6 has a huge impact on estrogen balance too. Try a vegan diet for one month, and take a B complex supplement too for a month. See if it doesn't make a massive difference in your next cycle. If it doesn't, drop it. If it does, only you can decide how strict you want to be.

 

Really?? Truly??? 3 weeks of eating like that would be torture for me, but so worth it for lasting effects.

[lovinmomma]

I should also state that I don't only get pain during my period days. I also get pain when ovulating. I've taken many many many different BC pills. The one that I finally gave in to taking (I hate BC) and am on now has helped the most. It's the nuvaring. I still have cramping and migraines but it is much better in length, heaviness, etc. I am, however, hoping in the future to make some diet changes, etc. and get off the BC because I hate the hormones in my body from BC.

[celticmom]

The dietary advice so far is accurate in my experience. In addition to the other dietary changes recommended I eliminated caffine from my diet (including chocolate). I never went on a completely vegan diet but my only animal protein was from fish and other seafood.

[FaithManor]

Really?? Truly??? 3 weeks of eating like that would be torture for me, but so worth it for lasting effects.

 

 

I don't have endo. But, I used to have TERRIBLE cramping, nausea, and dizziness during the monthly fairy visit. Due to digestive problems, I've had to radically change my diet and it has had a very, very positive effect on those symptoms so I can imagine it having a positive effect on endo.

 

I do not eat beef. I do eat fish - salmon, tilapia (my absolute favorite), walleye, and my dad's wild caught brook and rainbow trout. I allow myself organic turkey at the holidays. I don't eat pork and since my husband and the boys have also reduced their consumption of pork, we no longer raise a pig each year.

 

I eat eggs from local farm, free-range, largely organic but not certified, chickens.

 

Rice is my only grain and I buy that organic too. If you live in the Midwest, Meijer sells a reasonably priced brand of organic white and brown rice.

 

I eat organic legumes (pintos and black beans primarily, but also occasionally navy and kidney). If you can find a Mennonite bulk food store, you can get the dry beans at a very reasonable price and can your own with sea salt. This is a staple protein for my diet and since I have a hard time assimilating iron, I have to eat a LOT of these. It would do me no good if they were not raised organically because the pesticides used on them are synthetic estrogens that disrupt the nervous system of the insect and if it's a pesticide from Monsanto, then it's a double whammy because theirs are so bizarrely genetically engineered that the U of M botany department has proven that the pesticide is absorbed into the plant itself and alters the DNA of the plant which makes it incredibly hard to digest and absorb the vitamins/minerals.

 

I eat lots and lots of green and red vegetables. Red, yellow, orange, and green peppers are a staple food for me along with leeks, greens such as fresh spinach and butter lettuce. Broccoli is another and green beans, fresh from the garden, fresh picked and frozen so I have them for winter and home canned...I eat green beans three times per week.

 

I do eat some potatoes, just not a lot. Thankfully, I do not have to restrict dairy though I don't consume in large quantities.

 

I do not eat much fruit except the less sweet kind - green apples - another favorite of mine - and citrus. I occasionally allow myself some blueberries or blackberries for the anti-oxidants, but I'm very careful because eating very much of anything sweet - regardless of whether or not it is fruit, honey, stevia, agave, or cane sugar, makes me feel sluggish, and brain foggy. But, I do keep some 60% cacao bars around and indulge in the dark chocolate for the magnesium and I do notice a difference when I do not have any chocolate.

 

Dessert of any kind is sort of a once in a rarity treat.

 

I do use rice flour to make tortillas for myself since I tend to eat a lot of wraps with chicken, veggies, and black beans.

 

Cooking this way definitely caused our grocery bill to go up. It has been very worth the better health.

 

Gluten free....strictly, obsessively gluten free was the number one help for me.

 

Faith

Edited July 24, 2012 by FaithManor
spelling

[Lisa R.]

Can those of you who found relief with dietary changes post links or names of books that contain the specic diet recommended for those with endo?

 

TIA

[Liz CA]

Didn't read all replies...but supplementing with bio-identical progesterone can balance it out. Don't know if this would help existing endo but it should keep the endo from progressing.

[Katy]

Yes, even 3 weeks of a vegan diet makes a difference for years, for me. But according to the below articles, some people are much more sensitive than I am.

 

I no longer see the article at the PCRM website on the exact diet, but here's an article on endo and estrogen and food: http://www.pcrm.org/health/health-topics/endometriosis

 

Here's an article on using foods against menstrual pain: http://www.pcrm.org/search/?cid=165

 

Here's another (that probably references the diet I follow when I do this, given the time period it was published): http://www.pcrm.org/search/?cid=1165

 

FWIW, I don't recommend a long term vegan diet. It's too hard to get all the nutrients you need unless you work very hard at it. Also, it tends to be very deficient in things like iodine, and contain lots of things that block iodine (soy, cruciferous vegetables), so in my case at least, it set me up for thyroid problems. If I were to decide it made such a difference that I wanted to stick with it long term, I would get the free app called cronometer and track all my food to make sure I was getting enough nutrients. I know too many sickly vegetarians who refuse a little meat or seafood but who eat a lot of soy cheese (basically flavored crisco). Yuck.

 

Here's some links on B6 and estrogen imbalance:

 

http://hoghugs.com/2011/03/17/vitamin-b-complex-b1-b2-b6-b12-to-combat-estrogen-and-endometriosis/

 

http://www.drlam.com/articles/estrogen_dominance.asp

 

I've been contemplating going back on it because after a miscarriage in January I've either not been ovulating or had a very short luteal phase, which is apparently also due to estrogen issues. Right now I'm just trying 200mg of B6 a day, plus a B12 and prenatal supplement.

[Dealea86]

I think there's a huge difference between treatments that mask/minimize symptoms and treatments that actually treat the disease.

 

Diet, pain pills, and BC all mask or keep symptoms from progressing. Surgery is the only way to treat the disease.

 

Here's the thing about surgery for endo: if you don't get a good surgeon, you won't have good results from the surgery. Most OB/GYNs aren't experts in endo, and therefore tend to miss spots. Even one spot of endo can cause excruciating pain. If anything is left, it can grow. (For example, this study showed that endometriosis was most likely to regrow where it has previously been surgically removed, suggesting either "incomplete excision at the initial surgery or a nonrandom favored implantation of new endometrial implants in adjacent peritoneum.") Also, for some types of endometriosis, cutting the endo out gives better results than ablation (burning it out).

 

So if you have surgery, be careful who you choose. About 50% of women have their endo come back within 5 years of surgery. That's pretty bad odds, if you ask me, and it's one of the reasons I delayed surgery for so long.

 

However... I was at the point where I was unable to function many days every month, and as I was the primary caregiver to a two-year-old, I felt it was finally necessary. I chose my surgeon very carefully, one who had a very good track record of non-recurrence in his patients. That doesn't guarantee anything for me, but it does give me a better chance than with a surgeon who has 50% of his patients feeling symptoms 5 years later, ykwim? I think my surgeon's data from over 1000 surgeries over almost 15 years was something like 8% recurrence. He was out of network, though, so it was an expensive surgery (about $5000 out of pocket after insurance paid some and after a discount from the surgeon). But for a chance to get my life back, DH and I thought it was worth it.

 

I had stage II endo, almost stage III. I had it on both my ovaries, my bladder, and in many places on my abdominal wall.

 

After the initial recovery from surgery, it was amazing how much better I felt. It was better than when I was on a strict diet, better than when I was on the pill, better than when I was taking supplements for it. It was like there was no pain. Amazing.

 

... and then I got pregnant 4 months after surgery, after almost three years of infertility. ;) So even if I'm one of the unlucky few who have it recur, it will still be a while before that will happen. I'm very, very happy I chose to have the surgery.

[jewellsmommy]

The surgery helped me for a little time. It bought me enough time to allow me to get pregnant (after jumping through a hundred hoops of course). But it depends on how much they can remove. I have the material and scar tissue from it all bound up in my intestines. :glare: It is just one of those things you may not know til they open you up unfortunately. If the diet and progesterone can stabilize you, then do that for as long as you can. The docs say that the only sure bet is a hysterectomy :glare:.

[Dealea86]

The surgery helped me for a little time. It bought me enough time to allow me to get pregnant (after jumping through a hundred hoops of course). But it depends on how much they can remove. I have the material and scar tissue from it all bound up in my intestines. :glare: It is just one of those things you may not know til they open you up unfortunately. If the diet and progesterone can stabilize you, then do that for as long as you can. The docs say that the only sure bet is a hysterectomy :glare:.

 

Even that's not a sure bet.

 

I'm not saying I won't opt for a hysterectomy later in life if this surgery proves to be not enough, but even a complete hysterectomy is not always enough to cure endometriosis. :(

[Stayseeliz]

Thanks so much for the input. We switched to a whole foods diet in the spring and I went low carb but the pain has gotten worse. Not sure if that's a result of just getting older, getting AF back after having a baby and nursing (still nursing) or what. I eat grass-fed beef, organic chicken, free range eggs, organic veggies, etc. I do eat some dark chocolate and drink organic coffee. I will give those up if I have to but I reallllly don't want to.

 

The comparison between masking symptoms and treating it is interesting and I needed to hear it. It make take awhile before we could pay for it out of pocket but if it would help and it's needed I guess that's where I need to go.

 

Does anyone have endo and PCOS? With the PCOS I gain weight so easily if I'm not low carb and hormones make me NUTS. I think this is going to be hard for it to manage.

 

I'm very thankful to have my babies though! I have four total (two before these issues started and two after) and I am so blessed to have them!

 

I'm just ready to feel better. I feel like I've been hit by a freight train all the time. I need to figure out what's going on.

[Katy]

I've been repeatedly diagnosed with large ruptured ovarian cysts, but no one ever said PCOS to me. I think the diagnosis would fit pretty well though. You should google "iodine PCOS" because PCOS has been put into remission with large iodine supplements. I order them through amazon.

[Tracy in Ky]

I had my endo treated with Lupron injections for 3 months. This medication put me into menopause and literally stopped feeding the endo so it would die. This was about 14 years ago and I still do not have problems.:grouphug:

[DragonFaerie]

After 2 laparoscopic surgeries I ended up with a total hysterectomy. My insides were covered with endometrial adhesions. It is very painful! I'm so sorry you are hurting. It was about 10 years from the time of my first laparoscopy until I had the hysterectomy.

 

Best.thing.ever. No more pain, no more periods.

 

Ditto. I had endo all over everywhere, along with many cysts, some rather large. Surgical removal of the mess allowed me to get pregnant w/ DD. 16 months after I had her, I had DS by c-section and the doc discovered endo all over the place again. He "cleaned me up" (so to speak) but within two years, it was back again. Rather than continue to have surgery after surgery, I, too, opted for a total hysterectomy, and I am so happy I did. No more pain! Yay! Btw, I was 35, and yes, I have been through very early surgical menopause.

[melissad2]

Thanks so much for the input. We switched to a whole foods diet in the spring and I went low carb but the pain has gotten worse. Not sure if that's a result of just getting older, getting AF back after having a baby and nursing (still nursing) or what. I eat grass-fed beef, organic chicken, free range eggs, organic veggies, etc. I do eat some dark chocolate and drink organic coffee. I will give those up if I have to but I reallllly don't want to.

 

The comparison between masking symptoms and treating it is interesting and I needed to hear it. It make take awhile before we could pay for it out of pocket but if it would help and it's needed I guess that's where I need to go.

 

Does anyone have endo and PCOS? With the PCOS I gain weight so easily if I'm not low carb and hormones make me NUTS. I think this is going to be hard for it to manage.

 

I'm very thankful to have my babies though! I have four total (two before these issues started and two after) and I am so blessed to have them!

 

I'm just ready to feel better. I feel like I've been hit by a freight train all the time. I need to figure out what's going on.

 

I have both. My reproductive endocrinologist did surgery on me about 7 years ago and it was mild. I haven't had much trouble with it since then.

[cin]

Count your blessings you were able to have children at all. :grouphug::grouphug:

 

Good luck!

 

I have been on OC for probably close to 10 years. About 7 years ago I started taking it without a break. It may, in the end, knock 5 years off my life, but the quality is SO. MUCH. BETTER. No painful periods, no arguing with the Dr. over what is causing the pain:glare: and as an added bonus, no PMS :party:

 

I was never able to have children. They don't know for sure why, but I have endometriosis. 1+1=2, in my book anyway.

 

I had 2 surgeries over a 3 or 4 year period. Then started on the OC. Unfortunately, I also had some other meds back then, hormonal, to work on the endometriosis, and it was unpleasant. I grew (and still have) too much facial hair.

[Pamela H in Texas]

Are you done having children? If so, I highly suggest the hysterectomy.

 

Otherwise? None of my "cleaning out" surgeries worked and I couldn't stay on Lupron (nor would I). After several years, it stopped giving me as much trouble (though never as mild as yours sounds), but it was also all up on everything (intestines, bowels, bladder, etc).

 

Anyway, severity seems not to related to how wide-spread it is. But it seems near impossible to get rid of without a hysterectomy also. JFWIW, I also had several more issues though. Honestly, I wish I had had the hysterectomy after I had my son as we had planned. Waiting almost 17yrs did nothing positive for me.

[RanchGirl]

Bc pills and depot Lupron made it worse for me. (and nearly destroyed my life). Surgery didn't help at all. What did help was a very strict vegan, no grain diet. No meds at all, not even Advil, and just fruit and rice for one month. Only water to drink. I added veggies and cheese the next month, then slowly added back meat and then grains. A year later I got pg, and after I was done having kids I added caffeine and sugar back in. I eat about 50% organic now and don't drink much alcohol, and rarely anything with caffeine.

 

The pain has never come back.

[Stayseeliz]

Yes we are done having children. I had a tubal ligation with my 4th. I think that might be part of the problem. I'm really not sure what to do! We'll see what my gyn says next month. This is so frustrating!

[Katy]

I couldn't have a hysterectomy. It changes teA forever. Not worth it.

[DragonFaerie]

I couldn't have a hysterectomy. It changes teA forever. Not worth it.

 

I don't understand what you mean. :confused:

[Hilltop]

I couldn't have a hysterectomy. It changes teA forever. Not worth it.

 

I am wondering what you mean.... Libido? Physically? I am not trying to be snarky or nosy, I just really would like to know.

 

I had a lap done 9 years ago to remove my endo, but I know it is back, and my symptoms are worse. I know my gyn would suggest a hysterectomy if I said we were done trying to have children.

[Katy]

If you're considering a hysterectomy, you should probably google it, and what the unintended side effects are.

 

Not to get too graphic, but yes, physically. For one thing, the big O is actually rhythmic contractions of your uterus. It would feel much different, and you might have to change your definition of O. And it could cause a lot of nerve damage and obviously make things dry and uncomfortable... yeah, I don't want to get too graphic and get banned or something. Google it if you're curious. If it was a lifesaving thing that's one thing, but honestly I'd rather do a fat free vegan diet forever than drastically change teA. I love teA.

[southcarolinamom]

Ditto. I had endo all over everywhere, along with many cysts, some rather large. Surgical removal of the mess allowed me to get pregnant w/ DD. 16 months after I had her, I had DS by c-section and the doc discovered endo all over the place again. He "cleaned me up" (so to speak) but within two years, it was back again. Rather than continue to have surgery after surgery, I, too, opted for a total hysterectomy, and I am so happy I did. No more pain! Yay! Btw, I was 35, and yes, I have been through very early surgical menopause.

 

Yep! I was 38 when I finally had my hysterectomy. I was fortunate enough to be able to get pregnant with my 2 children in-between laparoscopies, but when the endo. came back the third time, my OB/GYN said I had only a 10% chance of ever getting pregnant again, because I had so many adhesions, scarring, etc. That was on top of 5 miscarriages totally unrelated to the endometriosis. Ugh.

[DragonFaerie]

If you're considering a hysterectomy, you should probably google it, and what the unintended side effects are.

 

Not to get too graphic, but yes, physically. For one thing, the big O is actually rhythmic contractions of your uterus. It would feel much different, and you might have to change your definition of O. And it could cause a lot of nerve damage and obviously make things dry and uncomfortable... yeah, I don't want to get too graphic and get banned or something. Google it if you're curious. If it was a lifesaving thing that's one thing, but honestly I'd rather do a fat free vegan diet forever than drastically change teA. I love teA.

 

That is definitely one of the more dramatic side effects. I knew it was possible, but I didn't realize how severe it could be. My husband actually left me over it (which is another story, but clearly he was not the man I thought he was). I do think if you're considering it, you need to have a discussion with your husband about that possibility.

[Katy]

That is definitely one of the more dramatic side effects. I knew it was possible, but I didn't realize how severe it could be. My husband actually left me over it (which is another story, but clearly he was not the man I thought he was). I do think if you're considering it, you need to have a discussion with your husband about that possibility.

 

 

Oh no. I'm so sorry!

[DragonFaerie]

Oh no. I'm so sorry!

 

Thanks. I guess he missed the "for better or worse" part of the marriage vows.