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Endometriosis Sufferers

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Old 03-16-2005, 09:30 AM   #1
Join Date: Mar 2002
Location: Barberton, Ohio USA
Posts: 89
jitterbug HB User
Endometriosis Sufferers

So much can be said about Endometriosis (I think it should be in it's own category). My own experience has lead me to believe that abdominal pain is not normal and you should have it checked out because if it is endometriosis, then the longer you wait to have it treated, the worse it gets. Are you aware that some doctors diagnosis intestial cystitis (can't spell it) when actually it's endometriosis because the IC can mimik endometriosis. Did you know that endometriosis, especially if left untreated, can get into other organs-bladder, bowel, thighs, lungs. I am scheduled for a hysterectomy in May, but my doc wanted to give me three doses of Lupron prior to surgery. I've taken the 2nd dose and have not had any improvement. I found out this week that Lupron does nothing to help adhesions that are already formed, it only helps from preventing more of them. So I guess that is why I have not had much relief. The pain I feel most is in the lower groin, inside thighs, and where the leg meets up with the torso (hip region). Although there certainly could be more going on here than the endo, I won't know that until after I have the hysterectomy. I've tried anti-inflammatories and pain meds, nothing is helping. Now, I'm going to try Castor Oil packs. I'm not much on taking medications (I despise the marketing campaigns by the manufacturers and how eager most docs are to prescribe drugs). Anyway, if anyone has endometriosis, I'd love to hear your comments. We can suffer together.

Last edited by moderator2; 03-16-2005 at 12:02 PM. Reason: please read the posting rules about revealing your profession

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Old 03-16-2005, 10:50 AM   #2
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Join Date: Feb 2005
Location: Berkshire, UK
Posts: 891
Tesss HB User
Re: Endometriosis Sufferers

Hi jitterbug!
I have endo too. At the moment I am reasonably free from pain which is remarkable. Ive cut out wheat and dairy and take slippery elm, all to help digestive symptoms, but it seems that since (mid Jan) Ive not had that much pain and its not as severe. Ill have to wait for longer to see if its really having an effect.
I was on Zoladex last year, I think its similar to Lupron, if it is then it will certainly help your existing deposits as it stops the ovaries producing hormones, therefore giving the endo nothing to live on. I was on it for 6 months and it took a few months for the full effects.

By the way Im not much on meds either!!

Last edited by moderator2; 03-16-2005 at 12:01 PM. Reason: please read the posting rules about revealing your profession

Old 03-16-2005, 12:04 PM   #3
Join Date: Mar 2004
Posts: 85
shan_y HB User
Re: Endometriosis Sufferers


Lets try this again. I too did the Lupron shot for 6months. After this I had a aprtial hysterectomy because of endo. Come to recently find out (2 weeks ago) that the endo is back. According to my GYN, unless all of the endometerial tissue is removed it will continue growing. I am now scheduled for both ovaries to be removed, burning of endometerial tissue, and scar tissue/ adhesion removal on April 11th. He also said that I will not be put on HRT soon to make sure that the endo is dead, because your body fat stores some estrogen, which is what endo feeds on. Best of wishes. All I can say is educate yourself. You are your best doctor, because you know your own body.


Old 03-16-2005, 12:11 PM   #4
Join Date: Mar 2002
Location: Barberton, Ohio USA
Posts: 89
jitterbug HB User
Re: Endometriosis Sufferers

Amen to that sister! (you are your own best doctor). I have done so much reading on it I could probably enlighten my doc on a few things. I'm going for removal of everything except the cervix.
Thank you!

Old 04-01-2005, 07:36 AM   #5
Join Date: Mar 2005
Posts: 59
Dees1977 HB User
Re: Endometriosis Sufferers

I am having a Lap on the 8th of April.. I have been having pelvic pain and frequent urination with no infection. I am scared that I might have IC..What is the difference between IC and endo? Has anyone else had trouble with there bladder due to endo? Thanks

Old 04-01-2005, 12:55 PM   #6
Join Date: Oct 2003
Location: Wa., U.S.
Posts: 369
Pootsi HB User
Re: Endometriosis Sufferers

I also have endo, it was found in 2002 when I was having mid-cycle bleeding. They had given me an ultra sound and found a cyst on my left ovary about the size of a large plum. Unfortunately, I had to have it out with a laparotomy instead of laparscope where they had to cut through my abdomen muscles. That's when they found out it was endometriosis and the cyst was a classic endo cyst surrounded around my ovary. They had to take the ovary and with it. They also removed as much endo lesions as they can see. My right ovary was okay, but r. fallopian tube had to be cleaned off. The flower part is fisted from the endo, so they tested it with a dye to see if it's open, it wasn't. Which explains why I haven't been able to get pregnant.
I was one of those that didn't feel the pain, just the bloating and frequent urination, thinking I was just sensitive. I did have very heavy, long periods, thinking that was normal.
I was prescribed b.c. to keep me balanced, in which I ended up stopping after a few months. Not to long after that I started getting polyps in my endometrium lining and had very heavy periods again. My doctor told me I need to stay on b.c. So back on b.c., the polyps started to shrink, the bleeding became minimal and everything back to normal.
Then after 6mths, my period started getting really, really dark. I decided to stop again and immediately went back to normal, but then months later started getting heavy again and started to get severe ovulation pain to the point of almost passing out. My lower abdomen would swell a lot during the pain to. Of course when I went in, I was prescribed b.c. again. Which has helped. So, now I'm just waiting to see what happens this time with the b.c.
It's sad that I have to depend on b.c. to function normally, yet having to deal with the problems from b.c. as well.
I'd rather go on a natural method, like using natural progesterone cream, but that may not help the ovulation issue.
They did suggest a total hysterectomy, but since I'm able to still manage without hysterectomy, I'm going to hang on to what I have as long as I can. I know a lot of endo suffers have a Lot of unmanagable pain in which b.c. or other hormones don't help and I can understand going that direction of total hysterectomy.
I think I may have had endo for many, many years, cuz I do remember having extremely painful cramps in my twenties, to the point of passing out. Plus my periods being extremely heavy in those times on. I'm 40 now.
That's my story.

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