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I live in a village just north of Bentonville, Arkansas. I am 24, and have been married for 2 years in December. I am a special ed teacher for high risk 6th graders who have learning disabilities.

A brief endo history: have always had bad PMS cramps, had them longer and more severe than usual in April. Ran the gammut of tests to diagnose bladder/kidney complications...took a couple of months. Insisted on a referral to my ob/gyn (he is the greatest :)) Did a laparoscopy in late May. The pain returned almost immediately. Yesterday, he said, yes, it's time to do something else. Had my first shot of depo-provera.

Other "stuff": I love to travel and to chat :) I am extremely high energy. In my free time (yeah right) I enjoy reading and cross-stitch. Cooking and my plants are also favorites.

I am married, I have a son 4 years old, I am 35, emigrant from Poland.

I have suffered from endo for about 18 years now. At the beginning I didn't know I had endo. I didn't even know such thing existed. I learned about it when I came to Canada. I was 25 then. My symptoms were strange. I never had painful periods. My endometriosis started with nausea (for years I thought I had a stomach ulcer). Then I had the urinary problems. It didn't hurt, but for about a year I felt like I had to go to the bathroom almost constantly. It only paused when I was asleap. It was driving me crazy but nobody knew what it was. Then I had postnasal drip (contant flow of mucus at the back of my throat). No, it wasn't an allergy or sinus problem, or anything that could explain it. I found an answer in a book my friend has lent me. As one of the reasons for postnasal drip, they listed high levels of estrogen. Then I was trying to have a baby. I couldn't. I had all tests possible. Finally my doctor told me I am a candidate for invitro. I started to wait for my turn to have the procedure done. It never happened. In the summer of 1992, I developed pain in my left side. There was a cyst there on my left overy. It has been there for about 10 years but none of the doctors I've seen in the course of those 10 years ever paid much attention to it. I was hurting badly. Night sweats, fever, pain. I went to the doctor. He said it was too late for laparoscopy, the cyst was huge. In August 1992, I had major surgery. When I woke up I was told I had endo severe, 3rd stage. My left ovary and tube was gone. I had endo in all my pelvic cavity: (on my bladder), on my bowel (I always thought I had hemorrhoids). They were surprised (the doctors) I never had much pain. I was put on Lupron. I stayed on it for 3 months. I couldn't take the side effects. Then right after I went off Lupron I got pregnant. My son is 4 years old now. I was lucky. A year ago I had another laparoscopy. I developed pain in my right arm and shortness of breath with my periods. At the same time I also had my chest checked. One of my lungs had collapsed. They checked and told me there was no sign of endo but I don't believe them. It happened to me before when I had my first lapa (when I was trying to get pregnant): the same thing: NO ENDO, but in fact I had 3rd stage, so I don't believe doctors anymore. I suffer alone. One month ago, that pain started in my right side; I know that kind of pain. Very familiar pain, nausea, postnasal drip; it's starting again. I've been very depressed for a month now. I had to tell about it. My husband had enough of my stories. I don't want to get on his nerves. He is a good man but he probably has had enough. I would really appreciate if anybody e-mails me. And one thing I forgot to mention: I also have melasma (dark, brown spots on my face related to my high estrogen level, due to endo) I have to use commercial strength concealer because nothing else works.

Dorota

I need somebody to talk to.

My parents are divorced so it has always been my mother, sister, and myself. I was a gymnast for 11 years, I dove, and I am REALLY into photography and poetry. I also LOVE to read.

I was diagnosed with endo when I was 17, but my mother suspected it when I was 15; I had SEVERE pain during my period and ovulation.

I am interested in options for treating endo, and what others are doing about their pain, etc...

I enjoy reading, having fun, and meeting new people.

My past doctor did not detect my endometriosis. I changed doctors and I was just diagnosed this week. I had severe endometriosis. It had been there for quite awhile, but no one had detected it. I'm hurt, confused, etc. I've been trying to conceive and I hope this will not ruin our chances of having a baby completely. I have 4 more months of treatment before we can begin trying again. I would like to do something, not only for myself, but for others. How many other doctors are being negligent?

Is there anything that I can do to help my body? Do I have any legal rights to a claim against my past doctor? Can I do anything toincrease my chances of conceiving and decrease my chances of an etopic pregnancy or miscarriage?

I read, write, do some outdoor stuff like white water rafting, I love to eat, God I'm not good at this am I?

I had to go for surgery last year, whereby laparoscopy did not even work. Despite the drugs they pumped in me, the cyst came back and not one but TWO appeared. I have refused all forms of drugs, and am living with the cysts in me. I used to be so fit, but now, my fitness level is so low, a snail would beat me. I don't know where to go anymore. I'm sick and tired of people saying it's all in my mind; dammit, I hope they get the cramps one day (sorry - am so £$%^ with people's attitudes) But I know this will pass, tho I don't know when.

Special issues: Treatment. Will I ever be well again?

My wife has endometriosis and the resulting infertility associated with it.

I would like support, especially success stories, from people who have had children even with significant endometriosis.

I am a student at The College of William and Mary in Virginia. I'm a chemistry major intending to go to graduate school to pursue a career in public health. I enjoy canoeing, sailing, swimming, camping, and I am a lifetime Girl Scout.

I have had endometriosis since I was 10. I was officially diagnosed at 14 with moderate endo (III) and some rare complications. I have endo and related adhesions on my liver, and possibly on my right lung. I have undergone Lupron therapy and had several surgeries.

I am particularly interested in talking to others with lung endo, though I know this is a stretch, since there aren't many documented cases of this anywhere.

I am a 22 year old full-time college student at Frostburg State University. I found out I had endometriosis in January of 1994.

I was admitted into the hospital in December of 1992 for what the doctors thought was appendicitis. They found nothing. For over a year, I suffered with severe pain in my lower right side and moderate pain in the lower left side of my abdomen. Finally, in January of 1994, one doctor I was seeing decided to do a laparoscopy. That is when I found out what was wrong. I started Lupron shots and received it once a month for nine months. There was no relief from the pain. Another laparoscopy was performed in August of 1996, but that did nothing because the docs just wanted to look. The pain had subsided for a while but now it is back in full force. Sometimes the pain is so bad that I cannot even walk. I don't know what to do because no one here really understands (and I am one of them). Why?

I love hiking and skydiving and just about any out door activity. I work too much and play hard.

For 10 years I have ignored monthly pain lasting about a week each month. I could ignore it because I hated myself and believed I deserved the pain. One day I stopped believing and started feeling. The pain bowled me over -- I hadn't admitted how bad it was. Now I seek relief. My pain matters and I won't stand for it anymore.

Family, Life....:
Married to my best friend 5/17/97 and very happy. We have a beautiful 8 year old daughter. I enjoy the outdoors, volleyball, hiking, biking, swimming, reading, cross-stiching, crochet, being active. I am an assistant Girl Scout Leader for my daughters troop.

Endo Experience:
First diagnosed 10 years ago, but first one bad doctor, a mis-diagnosis then an emergency D&C operation. Found my current doctor and received proper diagnosis and another surgery in May of 1987. I was in extreme pain and had become very enemic to the point of blacking out numerous times. I was very scared. My 2nd surgery I had a Laproscopy with Laser and a D&C. I was fortunate and have had no problems until the last several months...it's back. This time has been different though. More constant pain and other complications. Then add pre-cancer showing in my paps...not a fun year. I had my third surgery on Friday, October 23, 1997. A Laproscopy with Laser and a D&C. The same doctor from ten years ago! He also cut my Uterin Nerve (not sure what that is about till my appt. next week). Still sore from the surgery so to early to tell the results. He said it did not look as bad as ten years ago though so that was good news. Also my paps done right before the surgery came back A-OK!

What am I looking for?
Friends who understand. I have some wonderful friends but it is so hard to understand the frustration and pain that goes along with this problem. If you don't have it they can't understand the full extent. Also an avenue for new information and even a shoulder to cry on once in a while and to be there for others going through the same things. A place to feel comfortable and at home with this subject.

Personal info: married, 7yrs, no children yet, full time worker

I had hard cramps for about 15 yrs., can't get pregnant, just found I have endometriosis.

Married 18 yrs., 2 kids, love sewing, fishing, shooting, BASEBALL...Go Orioles!!!, gardening. Family life? I don't think you have the time...LOL I spent most of my teenage years taking care of sick grandparents that came to live with us. Wasn't too much time left for fun...:( However, given the chance to change anything, I wouldn't change a thing. Family always comes first.

Endo Experience: Terrifying. I was diagnosed with rapid cellular change in 1988. I went in for an annual GYN check up and my PAP came back a 1. Two months later, I developed bleeding during and after sex. I went back in and blew a 4 on the PAP (4 being the highest at that point). I went through silver nitrate and freezing treatments for 5 months to find every thing was great and the change in the cells have stopped. In December of 1996 the bleeding started again. I went to the doctor's and no one could figure out why i was bleeding during and after sex. I was subjected to several different types of treatments including the Leep procedure only to find out the bleeding was now non-stop. Still no one knew why. Finally, the hysterectomy came. It was at this point I was notified I have endometriosis. Since, I have suffered with abdominal pain, emotional stress, confusion and the feeling of "WHY ME?" It was easier to handle in 1988 when I was told the cellular change may be cancer. In my eyes, cancer leaves very little room for a "gray area". Endometriosis is nothing but gray area. After my surgery, my mom reminds me to tell the surgeon that my grandmother on my father's side died from cervical and uterine cancer. She completely forgot to tell me this while I was going through all the treatments. Now, I am confused...unsure what life holds for me ahead...will I be a burden on my two young children?

Special issues: Coping emotionally with an uncurable disease and how not to let my children suffer for my misfortune.

I have two children ages 8 and 14 months. I have been homeschooling my oldest for three years now. I also love to write and have been trying to break into the business of freelance writing which is quite difficult.

I have had endo for about seven years now. A few years back, I underwent laparscopic surgery and Lupron treatment due to the fact that I was not able to conceive and the pain had become unbearable.

The endo returned even stronger two months after the Lupron treatment. But by a miracle I conceived my son a few months after that. The endo was in remission until he turned six months old, and now it is back again really bad (my son is now 14 months).

My doctor believes I have a progesterone deficiency (I have all the symptoms) and feels this is aggravating the endo. He's putting me on natural progesterone and says this will help keep the endo in check and keep my fertility. He doesn't seem to feel that I will become infertile (I don't feel quite so sure). I have never heard of this treatment, so I am a little wary. I am no longer ovulating (I don't know if this is due to the endo or the hormone problem), and I lost one fallopian tube to endo already. I can feel new adhesions now-whenever I bend over there is a pulling feeling that takes my breath away.

I am hoping that this new treatment will help and I will be able to have more children some day.

Has anyone heard of natural progesterone helping to slow down or stop endometriosis?

I have had endo since I was 12. It took until I 20 before they finially diagnosed me correctly. It has been a very painful disease that has at times is very hard to live a normal lifestyle. I was infertile for a year and half. The doctor finially told after all the fertility treatment that there was nothing more he could do-- and to come back if I was pregnant. A few months later after a lot of praying and soul searching I became pregnant. So unbelievable even to this day. We were blessed with a baby girl-- the light of our life. So at this point this week I go in for my third surgery to possibly take out one of my ovaries. The endo is excrutiating pain right now and I can't wait to have some relief. It is not fair to my husband or daughter to be like this. I hope after this surgery we will be blessed with another child. I am also really praying for a cure and to pain free the rest of my life.

I'm am really interested in getting some info on dioxins and white bleach. Is there a link between these and endo?? When I was pregnant I was pain free for that time. The best I felt since I started my first period. Could it have been being off tampons for that time or just a hormonal difference. I'm very interested in learning about this. I truly hope there is a cure for this because I don't want my daughter to suffer with this the way I have. Thank you.

Not yet confirmed diagnosed, but experiencing symptoms, including sometimes severe pain, with ongoing dull aching pain.

Just interested in options for treatment.

I am married to Bill, and we just celebrated our 5th year anniversary in May 1997, although we have been together since 1982, our senior year of high school. We water ski and snow ski, and I have as my main hobby, putting together photo albums, called "creative memories".

Here is my endo story: Ever since I can remember, I have had painful cramping during my period. This cramping stopped with the pill. But, I have been off of the pill since 1992, and the cramping has been pretty bad, although I just thought it was "normal", and took upwards of 4-6 advil every few hours for the duration. Then, when we didn't get pregnant, and I saw a TV show which had some info on endo, I "self-diagnosed" myself last June. My self-diagnosis was just confirmed during my recent laparoscopy, when my doctor discovered "quite a bit" of endometriosis. My doctor removed via a "harmonic scalpel" all of the endo she could see, but I also had a cyst, which she believes is also endo. I have an appointment at the end of October to find out "what is next". At this point, I am spending my time in constant thought of what will happen next. And, I am afraid that I won't be able to get pregnant.

What am I hoping to learn from others? I am seeking info on success stories of other women who have had success conceiving. My doctor said something about "putting me in a state of false menapause and at the same time giving me ovulation medicine..but this is just a blur to me now."

Thank you for your wonderful sight. I look forward to joining an upcoming chat room, where I can meet others who have been and are going through the same thing...

Enjoy horses, cooking, outdoors, and playing with my son.

Hello! I didn't find out I had Endo until April of 97. In Nov. of 96, I started spotting every time my husband and I would have sex. I went to my Gynae that delivered my son. At first he told me it was probably nothing. I was supposed to try extra vitamins etc. Went back for a follow up and by this time was having very heavy periods, alot of clotting, and bad cramps. They finally did an ultrasound and found a 4cm cyst on my ovary. I had a Lap in April 97, and that's when they found the Endo. I was very upset in recovery when my husband told me, and I felt very alone.
At my post-op appointment with the Dr., he put me on temporary menopause with bc pills. We ended up switching the pill four times because I would bleed all the time. In July this year I started having severe back pain. I thought it was in my spine, so I waited until Sep. to get it checked out. I had no idea that Endo could return so fast. Right now I'm taking Vicoden for pain: 6 pills a day.It's so bad I can hardly bend over or sit down, tie my shoes, etc.
Anyway I'm waiting for my Laparotomy to be scheduled. That is what I chose over taking Lupron...too scared. The Dr. said after surgery we can try for another child. If we can or can't suceed I'm going to have a hysterectomy. I know this isn't a cure-all, and anyone with advice is welcome to E-mail me.

I'm glad to know I'm not alone!!!

Special issues: Any advice on Endo returning after a Laparotomy--while trying to conceive?

Husband Sean, Kid Joshy, I live eat, and breath endo.
Why dont you see my web page?
Special issues: support and education

I love cats, books, music, walking. I have two university degrees and I love Old English! I am 26.
Endo experience: Diagnosed January 1995. Two laparoscopies. Tried Dimetriose and Zoladex. Desperate to conceive.
Special issues: Help with getting pregnant!!

I'm a jokester who's interested in Anime, Metaphysics and Bad Puns. I have a lovely daughter, a wonderful boyfriend and the greatest cats in the world.

Special issues: Am I the only one who feels cut off from the rest of the world when the pain keeps me bed-bound?

Married...Books, gardening,travel

Incorrectly diagnosed for 5 years. Found out after going to a gynaecologist after not getting pregnant for 2 years. Stage 3 endo, main problems to do with digestion, bowel, stomach, back.

Still trying to get pregnant so don't want a hysterectomy; so am thinking about a laparoscopy, but have heard it's common to come back. Just how common is that?
Also, I've been told by the gynaecologist that there will be risks in removing the endo from my bowel because of possible perforation. Is it worth the risk?

Former Navy, now just a dependent :), 2 dogs, and an elton john fan 4ever.

Had a miscarriage approx 3 years ago (while in navy) never had a d&c, and have had problems since. After expl. surgery 2 years ago, revealed endo, fibroids and cysts on ovaries. Have had no pregnancies since then. And am still trying, with little success.
Special issues: Not really, I have a BIG book on endo, which I have read thoroughly, but the infertility issue does peak my interest.