Update: 2013. The below post is from 2007. I’ve since healed (functionally cured) my endometriosis: Endometriosis? Mine responded to natural care. Here I email the MD who mocked me when I refused her “care”
The real disease I deal with. I thought some of you might like to know more as most people don’t know what it is. Frankly I’ve spent little time understanding it myself even though as I’ve begun studying now it seems I have what is called Stage 4 endometriosis, the most serious you can have. I have severe pain several days a month now. Endometriosis is NOT run of the mill menstrual cramps. It is much much worse. To put things in perspective though, I do not have it nearly as bad as some people do. Some people have debilitating pain every day of their life. I’m not there yet. I just have it about a week a month.
My periods stopped while I was on high doses of Risperdal and I didn’t have to deal with the Endometriosis for many years.
I have been having increasingly painful periods for several years now since I got below 4 mg of Risperdal.
All the medicinal treatments for Endo are horrible and cause psychiatric problems for people who are sensitive, so I cannot take any of the western medicinal treatments.
I’ve begun treatment with an acupuncturist and hope for the best. In the meantime sometimes I get really bummed out because it seems I will never be well.
I am however researching as many natural alternatives to care as I can, since once again Western Medicine fails me and has nothing for me but surgery. I will not hesitate to have surgery again once I’m strong enough, but my body is so weak now it would be a big mistake. I hope that in the mean time I’ll learn to heal myself. I’ve had surgery twice already as a young woman before taking the Risperdal.
Here from a website called Endo Resolved is a description of what Endo is:
SO WHAT IS ENDOMETRIOSIS AND WHAT DOES IT DO?
ahh…yes…anesthesiologists…i think the problem is with MD’s in general…they all think they are god…
I”ve had the same exact experience with anesthesiologists though…telling them I can’t tolerate a class of drugs and then getting one of them in the mix anyway with assurances that it won’t go wrong this time…
ugh…
Yes, I’d forgotten that little business about it destroying your endometrium (du-uh!). Sounds as if you’re about as on top of it as a person can be.
We all have problems with anesthesia in my family. And the docs NEVER listen. After the harrowing experience is over they always tell us “Don’t ever let anyone give you X medication again.” They never seem to hear us reply “But, doctor, I told you about his problem BEFORE you gave me X because the last anesthesiologist told me ‘Never let anyone give you X medication again.'”
I’ve come to the conclusion that anesthesiologists make psychiatrists look open minded. I often wonder what kind of personality would take up a profession that involves putting people to sleep all the time. Talk about a power trip!
Oops, I seem to have wandered off topic here, bigtime. Sorry.
I’ve had friends with endo, and it looks so painful. I hope you can find something that helps.
Cricket,
sorry you’ve had to deal with this too.
I can’t tolerate hormonal treatments at all…and I stay away from Western Docs now because they refuse to listen to me when I tell them I can’t do hormones…
Amazingly enough I’m not in terrible pain this month! I think the D-Phenylalanine is helping. It helped the first few months I was on it and then it stopped, but I doubled my dose last month after my last period that was so bad….
D-Phenylalanine is an amino acid that raises endorphins…I don’t know if it will continue to work since it seems to have pooped out at 500mg a day, but is now working at 1000mg a day…I take it on an empty stomach…
the other variable is Vovezyme which are enzymes you take on an empty stomach that help with inflammation…I added that a couple of months ago and it can take a while to notice a change if it’s gonna do anything…
in any case this is an easier period than usual…of course I’m still in the thick of when it can get intense and it may, but so far, this is the best period I’ve had in years…very weird considering I posted this today…
I do get tired of people not understanding, as you said Cricket…you can be really explicit and they still don’t get it…
well…I live with that in multiple ways…the psych withdrawal no one gets either…the chronic exhaustion….and the endo pain…all very confusing to normal healthy people….
Anyway, so glad things are tolerable for you now…
I’ve been lucky enough that the endo is not in the inside of my rectum…it is however on my intestines and stuff so I have very painful bowel movements…but I don’t bleed out that end…I’ve heard of others with that as part of the picture….
take care and thanks for sharing the info you shared.
Thanks so much for writing this. I have endo and started an endo support group over a dozen years ago. I’ve had 2 laproscopic surgeries, 6 months of depo lupron, 1 yr of depo provera, and many years of bcps. My ovaries are often unhappy and I’ve had chocolate cysts rupture.
Mine went long undiagnosed b/c my pain was all the time; it wasn’t specific to my period. Treating it was just as awful with the horrible weight gain due to the depo injections. (Add to that the psyche med weight gain and I am a walking billboard for pharmaceuticals and Weight Watchers.)
My endo now is tolerable, however I can have monthly rectal bleeding due to endo invading growth. I am refusing another colonoscopy, because the source is known and the times specific.
This disease is life-altering. As above in comments, even when you explain it, people don’t understand.
I recommend the Endometriosis Association and membership to your interested readers.
I saw the gynecologist back in July. She suggested a D and C. I had one several years ago for the same thing. It helped for a bit, but then it was back to the painful periods and what not.
I have never heard of endometial ablation, but if it is what Jazz says it is, I won’t consider it because I still want the option of having children, even though that time is almost done.
Gianna,
I have had friends with endometriosis and so I know how painful it can be. I am so sorry that you are having to deal with it. It makes my piddly little whining about peri-menopause seem ridiculous!
You are in my thoughts!
Tamara
hey susan,
I’m really sorry…you know that could be peri-menopause…that is what happened to my mom….the endless periods…and heavy ones too.
but the ablation the other ladies talk about is good for what you’re dealing with….
if you’re in tons of pain it’s possible you have endo too. it’s not normal menstrual pain if you’re doubled over and can’t move or take care of yourself…that’s how I get…and that is usually a sign it’s possibly endo.
hope you feel better soon…
love to you.
I needed t see this today.
The last few days the flow has been so heavy and I am in so much pain, passing clots the size of silver dollars.
This has been going on for awhile now, and because of my meds and near death experience this Spring, my periods are now averaging about 15-16 days a month…..
hi gals,
thanks for the nice thoughts..
endometrial ablation is for INSIDE the uterus…
my endometrium is all over my abdominal cavity, on my intestines, bladder, etc, etc…
there are surgeries, of which I’ve had two that laser the crap off…but it doesn’t stay gone most often and didn’t for me, and as I said above, I’m too weak now, due to the withdrawal to tolerate surgery…I couldn’t possibly deal with anesthesia right now…I’ve actually always been allergic to the drugs they use and they never listen to me and I have awful reactions…I don’t want to come out of surgery completley nuts and I’m much more chemically sensitive now then I was years ago since I’ve been withdrawing.
once I’m healthier, if I’m still in pain you can be sure I’ll be having endometrial excision…which is the term used for when it’s all over the place…and it’s apparently somewhat more advanced than the laser surgery alone…
The key to understanding endometriosis is that it’s like internal bleeding…these patches of endometrium are in your abdomen where they can’t come out…unlike when your uterus empties out the vagina during menses…
so it forms lesions and masses internally and usually gets progressively worse…
anyway…people do respond to diet and acupuncture and I’m doing both now…it would be nice to not have to have the surgery, but if I have it it won’t be for a long time….I really need to be healthy. Meaning ROBUST…right now I’m sickly and I won’t have surgery until I’m healthy enough to recover, not get sicker from being able to not move around much.
I’m sorry you’re dealing with that. Sucks.
Gianna–
I had endometrial ablation done a few years ago–for heavy periods, rather than endometriosis–and it was a pretty quick deal. I had a bit of cramping the next day, but other than that it was not uncomfortable. It’s a laproscopic procedure where they inflate a “balloon” inside the uterus and circulate water that is hot enough to kill the uterine lining through it…but while it would take care of what’s actually in the uterus, I don’t think they can deal with the stuff that’s already found its way into the pelvic cavity that way.
One drawback, however is that once you have the procedure, it is unlikely that you would have enough of a uterine lining left to carry a baby to term…I waited until I was sure I was done having kids to have it done.
I’m sorry that you have to deal with this on top of everything else. I have a friend who deals with it, and as the article above says, it can be extremely debilitating.
I hope you are able to find some answers that work for you. The accupuncture sounds like a good place to start.
Hugs,
Jazz
gianna,
Have you researched endometial ablation? A woman I know here in NH had it done in PA. She refused to go through a hysterectomy. The condition improves at menopause but if I weren’t willing to wait that long (and I probably wouldn’t be), I’d definitely look into ablation.
My mother was born in 1920. She had a terrible time with cramps, so her father gave her a small vanilla extract bottle with whiskey in it. We Irish set great store in the medicinal powers of whiskey. When the cramps would hit, say at school, she’d go to the girls’ room and take a slug of whiskey. I can only imagine the ruckus that would be raised nowadays with such an approach. No, no–heavy, expensive drugs, that would be the response.
A month can seem a short time, indeed, when you’re dealing with something like this.
Best wishes,
Sherry