Women who are living with this monster, Endometriosis, have a story to tell !! To discuss it, and write about it, is a step toward emotional healing and coping. I hope that you will submit your stories, so that we may all get to know eachother, offer support and understanding, and keep in touch.

Menoi's Endometriosis Story .

Here is Cindy's story.

I live in the center of Florida, married, with one son and a step son. I have been married for almost 2 years, and I am 23 years old.

I was first diagnosed with endo in 1994, and I underwent my first laparoscopy. I was in the 3rd stage and in alot of pain. I had been to dozens of doctors to confirm what was wrong with me because I hade a lot of pain from the beginning of my periods, and tried birth control; did not help, made me worse. For that I ended up in the hospital for a week. They thought I was having attact of appendicitis. Well, that is not what it was. That was an allergic reaction to the birth control pills. They counter-reacted with my thyroid pills; I was about 14 at the time.

I got my first laparoscopy and diagnosis in November of 1994. Before I got my second Laparoscopy, I got pregnant. That was March of 1995. (I had already had my son, who is 4 now.) Anyways, that one I lost in my 4th month, and had a D&C done. Shortly after the miscarriage, the pain started back so I got the second Laparoscopy a year after my first one. Less than a week after the Laparoscopy, I got pregnant again and miscarried that one within less than a day...I went through a lot in a little time, to say the least.

Now the pain has returned, and my Ob/gyn wants me to go on fertility pills, which I agreed to because I want to try and have one more child before I get a total hysterectomy. My husband does not understand me wanting to have another one because he sees me in pain all the time, and does not like it. He wants me to get the hysterectomy now. I risk a great deal trying to get pregnant and trying to have my husband's baby, but I am willing. I think I am really scared to death to try and have another one, being I have lost two since my first son. I have a heart condition that puts me and the baby into great risk, so I have been told. If I do become pregnant, I would have to spend almost the whole 9 months in bed. As for the miscarriages: the first one was much harder, because I blamed myself for it because I listened to my doc, even though I did not think he was right. My family practice doctor, at the time, told me to continue to take my heart med, and that it would not affect the baby. Well, he was wrong. It stopped the heart 4 months into my pregnancy.

So, this is my basic story as of now. My husband and I still are trying to have another child together. It has not happened, but I have not given up hope yet.

Here is Diane Logan's story.

I'm 33 years old and have had Endometriosis since I was 18. I have been misdiagnosed too many times to count. Endometriosis is tricky, it can go unknown for so long. I've had 4 Laparoscopies before my Hysterectomy and the word Endometriosis was never mentioned until it was too late. My uterus was ruptured in three spots and my appendix was beyond repair. The doctor then put me on hormones, and the pain came back three months after my hysterectomy. I was told that I was experiencing Phantom pain because I missed my pain. Since I had no Estrogen in my body, any other cause of pain was almost impossible. He later cauterized an abdomen full of Endo, some phantom pain! He never apologized. I then had to have an endometrioma taken off in the doctors office by cryocauterization. I had no pain meds, I thought I was going to pass out! I now travel 2 hours out of my way to see a doctor who knows that you can have estrogen-free Endometriosis. He put me on Danazol. The medicine is making me very nauseous all the time. I am waiting for results on an MRI I just had taken. I'm living an "estrogen-free unnatural menopause with endo" life, going to school with 3 kids! Email me at dlogan02@snet.net with tips, suggestions,or just a smile.

Here is Elaina's story.

My name is Elaina, I am 22 years old. I was diagnosed at age 17, although I think I had endo since my period started at age 9. After years of suffering with severe menstrual cramps, I went to about 10 doctors, until one said it could be endometriosis. They all thought it was in my head. I have been to 5 doctors in the past 6 years and have had 5 surgeries.

I met my first doctor, who diagnosed me, then did my first laparoscopy. He found endo all around, and on, my bladder, my uterus, and the cul-de-sac area. Afterwards he put me on Lupron, which only caused unbareable side-effects.

Then on to the second doctor, after the first said he couldn't do anything else. This was about 7 months later that I had another lap., which showed all of the above places, as well as on the bowel. I stayed on the pill until 6 months later when I had another lap., which they did the same removal of endo and adhesions and scar tissue, as well as my appendix.

Three months later, I was in horrible pain again, and on to another doctor... who, this time, was a specialist in endo. He, as well, did two surgeries. This time we tried suspending my uterus, as well as cutting nerve endings to my uterus, and placing patches between the bowel and ovary to prevent it from growing together again. After that I stopped all medications. I was tired of it all.

For about 2 months I found relief. Then I went to another regular Ob/gyn, who started me on the pill again. That month at my period I wound up in the ER due to collapsing in the store from severe ovary and left leg pain... and three times since.

Now I have a specialist in Philly, which is a 2 hr. drive, but it's worth it. He said instead of doing another useless surgery, to stay on Stadol for pain. So that's where I am up-to-date.

I have been on Megace, Snyral, Lupron, the pill, and now Depro-Provera. I found no relief from any. I live every day in pain, I can't work, and hardly play. I am under the impression now that I have it in my arms and legs. I hope they can find a cure for this soon.

Here is Nevwyn's Story.

In 1986 I gave birth to a beautiful daughter. At the time I had no idea that she is the only child that I would ever have. The cramps started immediatly. They weren't major, so I took some Tylenol and ignored them. After a year, I knew that something was terribly wrong. The pains were so bad that I couldn't get out of bed. I lost my job. I lost my husband. I lost any real life that I had.

For years I went from job to job always losing them when the pain kept me home too much. And for years I was told by doctors, "It's not that bad", or "You're just one of the unlucky few to have cramps, you'll have to deal with it". In October of '96 I was rushed to the emergency room (by my boyfriend) with all the symptoms of appendicitis. They gave me an ultrasound which showed several 'masses' on both ovaries, my uterus and the surrounding organs. Four days later I had my first laperotomy and heard for the first time my diagnosis, fourth stage endometriosis!

I was livid! Why hadn't I been told about this disease before? Why all the secrecy? I later came to understand the medical community's views on chronic conditions. I was told by two different doctors that no one would take my case because of my condition. I felt like a leper. As no one in my family has this but me, they were torn between sympathy for my pain and disgust for my weakness. There was no one that I could turn to for support or understanding. A month after my first surgery, it was time for the second.

My second laperotomy was a disaster. I developed an infection which made the doctors re-open the wound. They couldn't close it again. For six months my boyfriend and I had to unpack, clean, debried, and re-pack my 10" long X 4" wide X 3" deep wound three times a day. To give you an idea of what this was like, it took an hour and a half each cleaning and I could look down and see my stomach muscle. The scar left is the stuff of nightmares.

As time passed, I watched all my hopes and dreams wither away. I began to wonder why I bothered clinging to such a life as this. The more I learned about endo, the more hopeless my situation seemed. Then, when I was at my very lowest point, a miracle happened.

My then 11 year old daughter barged into the room during one of the cleanings. She had yet to see my wound. I was terrified of what her reaction might be. But, wonder of wonders, she started to laugh. She said "Mom, that's about the funniest place in the world to put a smile!" My boyfriend took a good look at the wound and started laughing too. And before I knew it, so did I.

It really did look like a big red smile. I hadn't laughed in so long, I almost forgot what it sounded like. And you know what? For those few moments, I had NO PAIN!!! Since then the wound has healed. I've found a great doctor who believes in me and I've made great progress. I know that I've still got a long fight ahead of me, but I now have the will to fight. They say that laughter is the best medicine, and I'm living proof of that.

Here is Antonia's Story.

When I was first diagnosed I was put onto provera tablets - but I carried on bleeding, so they put me on dimetriose - and I still bled. Then they put me on Zoladex - the bleeding stopped, the pain stopped and the endo went away.

I came off the zoladex and went onto the contraceptive pill. I started to bleed again and the pain came back. The endo came back with it. Since I was first diagnosed I have had about 6 laparoscopies. Every time, except the 2nd or 3rd they found endometriosis and adhesions.

Last year I was also diagnosed with pelvic congestion. This is where the veins in the pelvis get blocked and cause pain. Apparently this is a common side effect from endometriosis, but I haven't met anyone else with endo, who has had this problem. The congestion seems to have gone - but the endo hasn't. I've been on provera taking 50mg a day, and the 30mg a day, and the pain started to come back.

In April this year I had my left ovary taken out, to see if it would help with the pain and the endo. The hystology on the ovary removed showed that there was some endo on it. This, therefore would mean that the endo had gone and that the pain would go too. When my gynae did the operation, he found endo on my RHS as well and some more adhesions. He diathermed the lot - all laprascopically - and told me that that would be that.

About 2 months later I started to bleed and the bleeding lasted for 5 weeks. My gynae told me to stop taking all my medication for a week and then to start taking it again. I did as he told me. I stopped the medicine - the bleeding continued. I started the medicine again and the bleeding stopped. A month later I started to bleed again. This time he took me off the provera and put me back on the contraceptive pill. He told me to take it continuously and that the bleeding would stop and the pain would go away. This month I started to bleed again. By this time the pain was so bad that I went into hospital for pain relief. My gynae didn't know what was causing the pain - until I started to bleed. I told him that this was my 3rd bleed in 3 months and that I was having a cycle. He agreed with me and has put me back onto zoladex.

He told me that I am incredibly fertile and that my one ovary seems to be working over time. The ovarian suppression didn't work. I'm hoping that the zoladex will do the trick again.

It's been a long haul of doctors not listening or not believing me, and this time round I am so glad that I did start to bleed, because otherwise my gynae would have sent me for more tests that aren't gynae related - when all along it's a gynae problem.

He seems to be banging his head against a brick wall with me, because nothing seems to work on me for more than 5 minutes. I have had pain free times, and look forward to another, it's just that they seem so far apart.

This disease is a horrible thing to have and the more people that know about it the better. I think that this internet support is amazing and I am so glad that I decided to get an account. It has saved my sanity.

I've had my first injection of zoladex - and my gynae said that if I go onto HRT (oestrogen replacement) then I can stay on it for 6 months, if it does the trick. That would be brilliant wouldn't it? 6 months of pain free time all for me.

It's amazing that doctors are still telling their patients to get pregnant, so that the endometriosis will go away. And there I was believing them! The amount of women on the ALT.support endometriosis and About Women Discussion group who have all had children and still have endo is horrifying. The other "myth" that I have come across is that a hysterectomy will cure it as well. It looks like it doesn't after all, especially if you take HRT.

It's scary to think that this thing can rule your life for your entire fertile period. The only thing that makes it go away is the menopause. Do I really have to wait another 25 odd years for that to happen? I do hope not. I hope that in that time the women of the world put their heads together and tell more people about this thing and make more people aware of it.

The more awareness there is, then the more hope we have of getting the research doctors to find a cure.

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