Endometriosis Pain Relief: Seeking Advice from Powerful Women

[Jean DeVries]

Now that I've scared away the boys......

Some poor few of you have followed the saga of my pain over the past few years. It's pain in my lower right abdominal quadrant that is EXCRUCIATING! Last year, I spend most of the year in pain, and trying to find various OTC and prescription pain medication that worked. Nothing. No Vicodin, no Extra Strength Vicodin, Dilaudid, nothin.

Two years ago, I had fibroids removed from my uterus. Last year, I had exploratory surgery, which really only found that my left ovary had adhered itself to the uterus, and my reproductive organs were shaped like "I'm a little teapot." So, I got that fixed. Didn't help the pain.

I did 6 months of Lupron, which is essentially a shot that puts you into chemical menopause. No pain, no periods. Life was good.

I stopped taking it in February (it's only a 6-month course), and three weeks ago, the pain came back.

(The day after I went for a bikeride for the first time in, like, 30 years I might add....coincidence? I think not....no more exercise for me!)

The doctor has diagnosed endometriosis. It also impacts my digestive system in ways I won't describe here. I'm not 100% sure that the pain isn't something in my lower digestive system, but the Lupron kept me pain free for 9 months, so the statistical likelihood is endo.

So, after that boring and exhaustive explanation, I approach this community of power women with the following question:

Has anyone had any luck holding off endo symptoms (pain) with diet changes? Natural remedies? Alcohol?

I'm scheduled for a hysto on 7/2, but if someone has another great idea, I'm all ears!

Shpanks!

 

[PampMomof3]

No i haven't but I'm sorry to hear what you're going through. Good luck with it. When I initially started reading, i thought immediately of your appendix....

 

[Jean DeVries]

No i haven't but I'm sorry to hear what you're going through. Good luck with it. When I initially started reading, i thought immediately of your appendix....

Boys have appendixes too

I thought of that too, but I don't have any other symptoms of appendicitis. And it's down farther than where my appendix should be. It's more just above the groin area.

I've also thought of hernia, but that's been ruled out also.

 

[raebates]

I have none of the advice you're looking for, Jean. Sorry. Do you have a really good alternative health adviser?

 

[Jolie_Paradoxe]

I am so sorry that you have had to deal with so much pain for so long and still no resolution! Will pray for pain free days and a quicker solution.

No advice for how to minimize the pain, though. May do some research and see if I find anything!

 

[crystalscookingnow]

It seems that we're two peas in a pod (didn't you have nose surgery that went not so well in December?) I've had similar pain as you. Actually already had the hysto in April of last year. My pain is back, really bad, and it's not any fun. Mine is in the upper right quadrant. They've been checking gall bladder, but so far no go. I go back on Monday to see the surgeon again & discuss the medication that didn't work for me.

My guess as to what's wrong with me? The endometreois is causing me pain & is probably attached itself to scar tissue. Lovely, huh? I don't know how to help you though b/c I don't know how to help me! My chiropractor thought that it was a pinched nerve in my back, but that hasn't given me any relief either. Do you know of a good chiro in your area that you could talk to?

PS - I think it's funny that the "similar threads" below lists questions about replacement parts & garlic bites....

 

[Trish in Texas]

I had endometriosis all over my bladder and colon (plus the other usual spots). As you mentioned, it can be very painful. I finally had to get a hysterectomy to get rid of all the symptoms.

I might recommend you try an alternative therapy (as pain killers can only do so much). Somethinng like biofeedback or acupuncture might give you some relief. Or see if your doctor can get you into a research study.

God bless you and help you feel better soon.

Trish in Texas
Independent Consultant

 

[DebbieJ]

My first guess was endo after reading the first few sentences. So sorry to hear about your diagnosis.

 

[ChefBeckyD]

Jean - I have an Alternative Practitioner who has worked (seriously) miracles for me. She is on Ivanrest, close to 28th St....right behind Borgman Ford.

I know so many people who've had internal issues that couldn't be taken care of by the mainstream medical community - and she was able to help. Including my SIL, and my two nieces, who all have a history of "girl parts" problems. I'd seen my SIL go through all kinds of Dr's and treatments, and Lynn has been the only person to help her!

Let me know if you want her name and #! Or if you want my # - if you have more questions.

 

[esavvymom]

I'm so sorry you are going through this and I wish I had more personal advice to offer. But I'd DEFINITELY get a 2nd or 3rd opinion before the surgery....especially after having seen the Oprah episode this week with Dr. Oz. Too many doctors try to take the 'easy way out' if they can't figure out the problem.

 

[BettieC]

Okay I may be totally off here...lol....but.....Are your periods normal?

I was suffering from very heavy periods and excrutiating pain with it. My dr recommended the Novasure procedure
NovaSure (Endometrial Ablation): Heavy Period Treatment

While I mulled over that someone else told me bc pills may lessen bleeding and cramps also. I've been on them for a few months now......and for me it has helped.

I hope this was some help

 

[diradt]

Ok I am not a doctor but am an ultrasound tech by day (please don't anyone quote Juno---everytime I see it..it hurts!)....but we deal with 'girl problems' allll day.

It sounds like the diagnosis of endometriosis fits your symptoms...the reason they went away is because the hormones put you into menopause. This is about to get kind of gross for some people....the reason we menstruate is because of hormones, what sheds is our endometrial tissue....therefore if you have endometrial tissue growing elsewhere (and it can be anywhere) every time around your cycle, your endometrial plants will shed as well....causing you intense, awful, horrible pain. Chances are your endometriosis is pretty far gone if it is attaching to your bowel and causing you digestive problems. ((PS...whoever is having right upper quad pain, endometrial tissue can easily travel there and could be causing your problems as well)) Doctors can't possibly remove all the endometrial implants because you can't see them unless they have formed benign tumors---so if they are still there, they can still 'shed'.

The reason the hysterectomy works is that they usually put you on some sort of low-dose hormone to regulate your body---therefore the rest of the endometial plants dont shed. However doctors like to leave the ovaries because the longer we take artificial hormones, the higher the chance for cancer later in life. If the ovaries are still operating in a cyclical pattern , you will still essentially have cycles and "shed" endometrial tissue.

Some options: look into some hormone regulators...low dose supplements for after surgery or better yet a natural, herbal way to regulate your hormones.

Like I said I am not a doctor and I dont like to even get involved in discussions like this but in lieu of dragging out your pain for several other opinions, try seeking alternatives to hormones in the long run. And enjoy living pain-free!

 

[pampchefrhondab]

I'm also sorry you are going through this.

I had problems for many years and finally had NovaSure last October. It has worked wonders for me! I still get some back pain, but no longer have periods and cramps. I also had bowel issues which have improved.

My husband said I don't have PMS anymore either!

It's been a lifesaver for me. I really wish I would have done it sooner. My Dr. had recommended it, but I never had the money to pay for it. Since I had my gallbladder out and met my maximum out of pocket last year I was able to justify having it done.

Good luck,

 

[ChefLoriG]

I think copious amounts of alcohol should work




(kidding, good luck with the surgery)

 

[chefsteph07]

My best friend has endo and she is infertile due to it.
Her doc has put her on continuous birth control for her pain and symptoms. That is the only thing that has helped even a little.
But since you are scheduled for surgery in a couple weeks, that prob wouldn't help you now.
Sorry for all the women that have to go through this. It has totally screwed up my friends life. She lost a 10 yr marriage because she was not able to conceive.

 

[Jean DeVries]

It seems that we're two peas in a pod (didn't you have nose surgery that went not so well in December?) I've had similar pain as you. Actually already had the hysto in April of last year. My pain is back, really bad, and it's not any fun. Mine is in the upper right quadrant. They've been checking gall bladder, but so far no go. I go back on Monday to see the surgeon again & discuss the medication that didn't work for me.

My guess as to what's wrong with me? The endometreois is causing me pain & is probably attached itself to scar tissue. Lovely, huh? I don't know how to help you though b/c I don't know how to help me! My chiropractor thought that it was a pinched nerve in my back, but that hasn't given me any relief either. Do you know of a good chiro in your area that you could talk to?

PS - I think it's funny that the "similar threads" below lists questions about replacement parts & garlic bites....

Hey, my doc told me that I could still have endo pain after a hysto, but that 3 months of Lupron should take care of it because the thing that makes it flare up is no longer there.

Worth asking about perhaps....

 

[Jean DeVries]

Jean - I have an Alternative Practitioner who has worked (seriously) miracles for me. She is on Ivanrest, close to 28th St....right behind Borgman Ford.

I know so many people who've had internal issues that couldn't be taken care of by the mainstream medical community - and she was able to help. Including my SIL, and my two nieces, who all have a history of "girl parts" problems. I'd seen my SIL go through all kinds of Dr's and treatments, and Lynn has been the only person to help her!

Let me know if you want her name and #! Or if you want my # - if you have more questions.

Becky....I would be interested. Can you PM me her info?

 

[Jean DeVries]

Okay I may be totally off here...lol....but.....Are your periods normal?

I was suffering from very heavy periods and excrutiating pain with it. My dr recommended the Novasure procedure
NovaSure (Endometrial Ablation): Heavy Period Treatment

While I mulled over that someone else told me bc pills may lessen bleeding and cramps also. I've been on them for a few months now......and for me it has helped.

I hope this was some help

I'd be hard pressed to tell you if they're normal....I didn't have one for 6 months, then I went on BC, taking the fake week only once every 3 months. I've been bleeding off and on for the last 3 months, and pretty constant for the last 2 weeks. I have no idea what normal is anymore......

I do know I did enjoy those six months without one....

and that I overuse these:.....

 

[Jean DeVries]

Ok I am not a doctor but am an ultrasound tech by day (please don't anyone quote Juno---everytime I see it..it hurts!)....but we deal with 'girl problems' allll day.

It sounds like the diagnosis of endometriosis fits your symptoms...the reason they went away is because the hormones put you into menopause. This is about to get kind of gross for some people....the reason we menstruate is because of hormones, what sheds is our endometrial tissue....therefore if you have endometrial tissue growing elsewhere (and it can be anywhere) every time around your cycle, your endometrial plants will shed as well....causing you intense, awful, horrible pain. Chances are your endometriosis is pretty far gone if it is attaching to your bowel and causing you digestive problems. ((PS...whoever is having right upper quad pain, endometrial tissue can easily travel there and could be causing your problems as well)) Doctors can't possibly remove all the endometrial implants because you can't see them unless they have formed benign tumors---so if they are still there, they can still 'shed'.

The reason the hysterectomy works is that they usually put you on some sort of low-dose hormone to regulate your body---therefore the rest of the endometial plants dont shed. However doctors like to leave the ovaries because the longer we take artificial hormones, the higher the chance for cancer later in life. If the ovaries are still operating in a cyclical pattern , you will still essentially have cycles and "shed" endometrial tissue.

Some options: look into some hormone regulators...low dose supplements for after surgery or better yet a natural, herbal way to regulate your hormones.

Like I said I am not a doctor and I dont like to even get involved in discussions like this but in lieu of dragging out your pain for several other opinions, try seeking alternatives to hormones in the long run. And enjoy living pain-free!

Excellent info. My lone ovary is coming out also, specifically to stop the hormonal stuff. When I was on the Lupron, my doc also gave me Premarin to head off the symptoms of menopause. Except that I never had any. Until I stopped taking Prozac, then I wanted to go strip naked and jump in a snowbank. I have subsequently read that Prozac helps menopause symptoms, specifically hot flashes.

My doctor also told me that since I"m fat (my words, not hers), I produce more estrogen naturally. Cool. Bring on the tubs o' chocolate ice cream!

I've already started looking into natural remedies for the menopause symptoms. I've heard gin works well

 

[diradt]

Tequila is my recommendation ... but get the good stuff! May cost more initially but does the trick quicker!

 

[crissy11]

I went in for a partial hysto a year and a half ago and when they got inside noticed that I was covered in endo.. I didn't have the intense pain that you normally have so never knew that I had it.. ended up they done a complete hysto. My gyno said that in order for the endo to die off I could not have any hormones for 9months. I thought I would need them but still to this day I don't. He said we would treat menopause symptoms as they arose.. He said that the endo grows from estrogen and if you start using hormones it will continue to grow.. I did not want that so no hormones for me...

 

[chefann]

Until I stopped taking Prozac, then I wanted to go strip naked and jump in a snowbank. I have subsequently read that Prozac helps menopause symptoms, specifically hot flashes.

Your reaction to stopping Prozac may have something to do with how you stopped it. Prozac can't be stopped suddenly - you have to get off it gradually, just like it's supposed to be started gradually. And Prozac is pretty nasty stuff, if you're only taking it to help with menopause systems. I've got a book about how it's not the wonder drug it's billed as - it doesn't get rid of depression in many patients, hasn't been studied for long-term effects, may make some depression symptoms worse, and is completely destructive to the libido.

 

[Jean DeVries]

Your reaction to stopping Prozac may have something to do with how you stopped it. Prozac can't be stopped suddenly - you have to get off it gradually, just like it's supposed to be started gradually. And Prozac is pretty nasty stuff, if you're only taking it to help with menopause systems. I've got a book about how it's not the wonder drug it's billed as - it doesn't get rid of depression in many patients, hasn't been studied for long-term effects, may make some depression symptoms worse, and is completely destructive to the libido.

I cold turkeyed Prozac the other three times I took it, so I thought it would be OK this time.

It really works well for me. I was a wreck without it. I'm taking it pretty much for debilitating depression.

As for the libido...well, it doesn't really matter. No one wants to have sex with me. Only now that I'm on Prozac, I just don't care

 

[The_Kitchen_Guy]

Now that I've scared away the boys...

To quote the late Sam Kinneson...

"You can't scare me, I've been MARRIED!"

Besides, since only girls have the surgery, it should be called a "hersterectomy."