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post #1 of 17
Thread Starter 
Has anyone got this, or suffered from it in the past? I have had ' suspected ' endromitriosis for just over a year, the abdominal pains just came out of nowhere and I have suffered ever since. I am still awaiting an appointment to see the gynacologist though.

I have read that they have to do a Laparoscopy (sp) to confirm this, and that there is no cure, and treatment has bad side affects
All I know is I have a real good pain barrier, but this pain makes me cry hard, work suffers, my sleep suffers and it's a really miserable time. Pain killers (if real strong) help a little, as does a hot water bottle, but don't think I can live with this for the rest of my life! although I may not have a choice with that!

So I just wondered if anyone here, or you know has suffered the same and if you can offer me any advice?
post #2 of 17
Well, I was just diagnosed with endometreosis in January after a laporoscopy, and my gyno now has my on the continueous birth control pill. The theory behind this is to not have a period, thus helping the pain of my endo. My girlfriend was also diagnosed with it. Nothing seemed to help her, so they ended up doing a hystorectomy on her. She says it's the best thing she ever did. No more pain!
post #3 of 17
SharonKay has endo too. I am sure if you PM her sometime she has lots of wisdom and knowledge to share, she was diagnosed just a year or two ago i believe.
post #4 of 17

I suffered for years with endometriosis, and while they tried everything from the birth control pill to lupron shots, nothing seemed to help, eventually I had to have a hystrectomy, (I was not even 30 when they had to do this, there are set backs when they have to perform this on you when your young. I wasn't able to keep my ovaries, and they wanted and suggested I take replacement hormones). I opted not to do the hormones, due to the fact that breast cancer runs in my family. So hormone replacement is something you need to keep in mind as well. As a result also, because I didn't take hormones, I am now dealing with having osteoporosis, (might have happened anyway, but having hystrectomy at a young age and not taking hormones didn't help either). There are alot of websites you can go on for information. (you can do a google search). I would really advise you to talk to your doctor, and get as much information you can get. Everyone is different and some people have better success with different treatments. Hope this helps. Feel free to email me if I can help you with anything. Good Luck!!!!
post #5 of 17
I suffered with it for over 30 years, and nothing seemed to help. It caused severe abdominal adhesions, too, and I finally ended up getting a hysterectomy two and a half years ago.
post #6 of 17
I suffered from endo as well until they did a total hysterectomy which ended the problem.
post #7 of 17
My mom and two aunts both had to have hysterectomies before 30. My one aunt was actually my age, 25, when she had hers. My gynecologist gave me a suspected diagnosis when I was a sophomore in high school and put me on the pill, nausea medicine, and pain pills. When I had an appendectomy at 17 they removed quite a bit of endometriosis, from my bowels and fallopian tubes, as well as some other places. I was put on a temporary menopause-inducing medicine, but I can't remember it's name. I was on depo for a while. Otherwise I've stuck with the pill, tried the patch and the Nuvaring. The pill works pretty good for me now. If I get off the pill my period goes for two weeks or more and gets very painful. Endo caused IBS in me I think, as well as repeated bouts of anemia. The pill has helped me significantly. Taking certain herbs, like primerose oil can help. Avoiding caffeine (tough for me!!!) and overly fatty foods is also supposed to help. Exercise, yoga, and relaxation can help with the pain I think. There are some pretty good books out there on the subject. www.endometriosis.org has some good info as does www.endometriosisassn.org.

Endometeriosis can cause infertility- something my gynecologist made very clear to me as a teen. My two aunts were unable to get pregnant because of all the endo adhesions they had. My mom was able to have my brother and I and my grandmother had four girls- so I don't think it has to be that way for everyone.

The only way to know for sure is through a laporoscopy- but it really isn't that bad a procedure. It's outpatient and goes pretty quick and just leaves a tiny scar in your belly button.
post #8 of 17
I have endomitriosis, as did my mum.. really hte only thing I can suggest is birth control to keep your cycle regulated, and also because it will lessen the cellular walls (to lower the natural female propensity for baby making.)

Also , having a regular pap is extremely important, since with endomitriosis there is a higher risk for anomalies in your cells.

Take care.

post #9 of 17
I don't have any experience but as a woman with other female issues I send best wishes to you.

post #10 of 17
My mom suffered from endometrioses, she got through it and was able to have me. If you want her e-mail just message me.
post #11 of 17
I have it, but not nearly as severe as you described. It caused my ectopic (tubal) pregnancy when I was in my 20's and I didn't take the risk of a second pregnancy. The up side is that now I'm the mom of many cats.......

My heart goes out to you!
post #12 of 17
I have it .. I had laparascopy done in 1997 to remove some of it .. havent had any real problems since then
post #13 of 17
My mom has had it since she was 17. By the time she was diagnosed at 21, she had stopped having her period all together. She's had three laporoscapies throughout her life, and has never been on birth control or any other medication. She was told she wasn't able to have children, but I guess I changed that diagnosis.

I think it depends on how bad it is. My mother opted to never take medication or hormones, and they never offered her a hysterectomy. She hasn't been "cleaned out" for 17 years, and now that she's done with menopause, she'd like to get it done one more time. It's just something she's learned to live with, sadly.
post #14 of 17
While I never had endometriosis.. I DO know what it is like to have abdominal pain so bad that you cant move a muscle, get out of bed, go to work. I had I guess you would call it a chronic cramping of the uterus. I bled constantly and had cramps that felt LITERALLY like labor. I DID end up having a total Hysterectomy in May 2003. At first, I felt like I had made the wrong choice by having surgery, because I had MAJOR complications with surgery (if you want to know, just PM me). After I recovered though, I have had absolutely NO abdominal pain (well.. with the exeption of the occasional bout of gas.. LOL)

BTW... I was barely 25 when I had my hysterectomy. In fact, every woman in my family (save for 1) has had to have one by the age of 30.
post #15 of 17
Thread Starter 
Thankyou so much everyone, and also for the links.
Wow I thought maybe one or two people would know what it was like, but the response here shows just how many people do actually suffer! Most people I have spoke to don't even know what it is, so it's so nice (not that you've suffered of course) to know others have been or are going through it.

Once it is confirmed that it is what I actually have, then I guess it's trying all treatmeant, hysterectomy being the worse case scenario! I know I won't be having any more children, but my mum had one due to a prolapsed womb, they left her ovaries in, and we lost her to ovarian cancer...so much to think about, but until they actually confirm it, I guess for now I can't be thinking like that.

Oh the joys of being a woman eh!
post #16 of 17
I'm one of the lucky ones where the endo hasn't gone terribly far )up the tubes, and some lower areas that the tissues are fewer, but not throughout my intestines as some people here, but I'd had an ectopic Preg. when I was much younger, so in a way I'm a bit glad that it was what it was, as I was certainly not meant to have a child then.was How I found out what was going on (I was having a strange period, called it in, and they said all they werre gonna say about it, which included a lot of scolding.) .. it took my parents 10 years and a litle luck to spring me, i hope it's easier on me. but since I'm getting regular care, i'm probably safer than me mum. the birth control really does help-

I hope that you are one of the luckier ones as well-with minimal tissue spreading- IF you find that is what you have.
post #17 of 17
I have been having problems for like 10 years and lately I have been suspecting endometriosis. My older sister has had it for years and has had 2 laproscopies. But I've never really talked to her about it enough to compare symptoms. After reading what y'all have wrote here, I'm thinking OMG - it's like I'm reading about myself. This sounds just like me. I've got tons of problems, and I was put on birth control pills several years ago to ease some of my symptoms and to regulate my period, which has helped, but not completely. I have an appointment with my doctor in a couple weeks, I think maybe I might ask her about this. Thank you for posting this (that is weird)! Maybe it's a sign.
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