Endometriosis - any ideas for treatment?

[flamingyouth]

I had surgery for fibroids in April after months of misery. Well, I lasted about five months with few symptoms and now I'm sick as a dog with pain again.

Short of getting a hysterectomy, what can I do? I've tried diet changes, stress reduction (LOL...I'd be a lot less stressed if I didn't feel like crap), massage, acupuncture, yoga, aromatherapy and just about everything else over the years.

I really thought the surgery would lessen my symptoms. My doctor thought so too. I'm depressed that I'm in so much pain again. BTW, I'm taking a progesterone pill daily (can't take estrogen).

If anyone has any ideas, I would really appreciate it.

[junker]

1. find a recommended ayurvedic doc

they take a different approach....it may work if you can get a recommendation to an ayurvedic with talent in your area...

[flamingyouth]

8. Thank you!

I will look into that.

[liberalhistorian]

2. Well, speaking as a

38-year-old woman who had a complete hysterectomy last summer due to, among other things, endometriosis (the "other things" being ovarian cysts, scar tissue, fibroids), I can honestly say that I've never felt better or healthier and I wish I'd had it five years ago when I first began having real problems. It's never really going to go away, no matter what the non-surgical treatment, short of a hysterectomy. It may get better off and on, but you'll never be really free of it short of the surgery. And believe me, you feel so much better after the recovery period that it really is worth going through the pain of the surgery and the 6-8 week recovery period. It is WONDERFUL not to have to deal with any of that mess and terrible pain anymore!

[flamingyouth]

4. I bet it is

I've never had children, though, so I admit it's a little scary to go the hysterectomy route. I should probably let go of that fear, though, because these problems are starting to ruin my life. No one should have to be in this much pain and misery, I swear. Well, you obviously understand, having suffered with this as well. I too have had the cysts and scar tissue as well.

Thanks for sharing your experiences with me; I really appreciate it.

[liberalhistorian]

12. I know exactly what you mean about having

children, I felt the same way even though I have a son who was 11 at the time of my surgery. I'm a never-married single parent, though, and I'd always hoped to marry and have more children the "regular" way, since I went through the pregnancy and birth alone.

I did feel a little pang of regret about that, but then I realized that I was already 37 years old which, in terms of having children, was starting to get up there. And, since there was no potential mate in sight, even if I did have more, I would probably be over 40 which, to me, was too old to have kids. Besides, my "system" was so messed up that there was no way in hell I would have ever conceived anyway, and she (my doctor) said that it had probably been like that for a few years already and that I likely stopped being able to conceive then.

[flamingyouth]

16. I know what you mean too, Lisa

I'm sure that, by now, my uterus is a most unhospitable place! Let's just say it hasn't had a good run over the past 20 years or so. I'll be 35 at the end of the month. I'm thinking I should just cash it in and have the surgery.

I've always been enchanted by adoption, anyway, so if my husband and I decide we want to have kids, we should do that. We already have a houseful of animals - I guess they're our substitute children!

So glad that you're doing better after your surgery - that's great to hear. Take care!

[liberalhistorian]

17. That's a very good idea, and there

are hundreds of thousands of foster children just desperate for an adoptive family to call their own!

[Ilsa]

3. I heard there was a new treatment for endometriosis,

but I don't remember much about it. Have you heard about anything new around the Spring of this year?

Have you been to a new doctor?

[flamingyouth]

6. I saw the end of something on the news

But didn't catch the name of it - a doctor in La Jolla who was testing something new. All of the women they had on the news report were raving about it. But I walked into the room too late to get more info. Anyone else know about this?

(PS - Thanks for responding! :hi:)

[amazona]

10. are you talking about embolization?

The blood supply in the arteries leading to the fibroids are choked off, which is supposed to kill the fibroid. It is supposed to be extremely painful.

Procedure is called UAE or uterine artery embolization.

[flamingyouth]

11. I thought it was a medication he was testing

I know about embolization, and I'm not sure I want that. BTW, my fibroids were supposedly removed earlier this year, so I don't know if they're back, or if it's "just" my endo that's causing the problems now. ARGH. I haven't had an ultrasound since April.

[catzies]

5. Have you had a laparoscopy?

I had horrible endometriosis that was taken care of with a laparoscopy in 1990 and subsequent scraping of my ovaries etc. to remove the adhesions.

I'm very lucky that it worked for me and I've had no serious relapses since.

[flamingyouth]

Yeah, I had that in April

I was hoping it would be a magic cure-all, and it wasn't :-(

[liberalhistorian]

20. If the laparoscomy

didn't work as well as you thought, maybe a hysterectomy really is the only sure solution.

[amazona]

7. this is a tough one

I haven't seen any evidence that my fibroid responds to diet or lifestyle changes, nor have I read any literature to that effect, nor did my doctor seem to think it was anything I could do anything about. It grows and shrinks as it pleases, I'm afraid.

I guess what I'm saying is, if you do find something that works, please be sure to post again or to bump this thread so we can learn about it too.

[flamingyouth]

9. That's what my doctor said too

I asked about becoming a vegan and everything, and she said that there was no proof whatsoever that it would help. (She's an osteopathic gynecologist with a real interest in alternative therapies.)

Don't worry - when I find the magic cure for disabling menstrual cramps, you will all be the first to know!

[liberalhistorian]

14. I still believe I found the magic

cure, but I'm well aware that it's not for everyone and I certainly understand that. It's just such a relief for me, though, and I just feel so much better that it's hard for me to watch other women have to deal with all that pain and mess when they don't have to!

[prolesunited]

15. There might not be scientific proof

But it worked for me. I have fibroids and was having such severe problems that I became anemic twice. I won't even go into the rest of the ugly details.

I went on a health kick, not related to that, but as a by-product, have had significant relief without drugs or surgery.

I have a very high-protein diet based on soy products, probably consuming between 50 to 70 grams a day, and am working out regularly. I rarely have problems anymore with the exception of when my stress levels are high. That seems to be a big trigger for me and the exercise really helps with that.

Everybody's different but I just thought I would share. Hope you feel better soon. I know how miserable it can be. :hug:

[Booberdawg]

13. Are you holding off on the hyster for child bearing reasons?

As in, still hoping to get pregnant? Or just holding off for the sake of not having surgery? Because if a partial hyster is an option I would go with it and get it over with. You'd still have your ovaries and thus still ovulate.

I had to have one 11 years ago and recovery time was quick and I had no problems other than some hormonal craziness and "power surges" for a few months.

[MikeDuffy]

18. "Consumer Reports on Health" sez

"In most cases, the first step should be to try prescription pain relievers, birth-control pills (which contain hormones that regulate growth of the abnormal tissue), or both treatments. About 60 percent of women respond to such relatively simple therapy.

If pain doesn't subside substantially, patients can try gonadotropin-releasing hormone (GnRH) agonists, such as goserelin (Zoladex), leuprolide (Lupron), and nafarelin (Synarel), which shrink the affected tissue by halting menstruation and reducing estrogen. The latest twist to this treatment is to add back a little progestin and estrogen; that can reduce the side effects without reducing the efficacy.

When medical treatments fail, surgeons can use a minimally invasive procedure called laproscopy to remove the abnormal tissue (that's often the first choice for women trying to overcome infertility) followed by medications. Finally, women still plagued by pain may want to consider a hysterectomy (see below). The chance of endometriosis returning is lessened if the ovaries are removed during the operation, but younger women should consider that only as a last resort since it will precipitate early monopause."

From the December 2003 issue, page 6.

[jiacinto]

19. Go to an OB/GYN

I worked at one. I saw pictures of fibroids--nothing pretty at all. I feel for you.

[liberalhistorian]

21. No, they're not pretty at all,

and endometriosis is even worse! And they both feel as bad as they look!