Hi! My name is Mandy and I am 22 years old. Five years ago, I was suddenly and unexpectedly doubled over in extreme pain. I had always had heavy periods with major cramping, but never pain at any other time. I spent the entire night throwing up.

The next morning I informed my mother and she took me to the doctor. We were afraid it was my appendix. Well, as you well know, they found nothing and sent me home. Thus started three months of hell. I was seen by ten different doctors, all telling me different things ranging from my gall bladder to rupturing ovarian cysts to I was just looking for attention. During this time I was extremely ill. I lost over 25 lbs., was constantly dizzy and finally got to the point where I was blacking out because I was so weak. Finally, in Janurary of 2000, my mother to me to her obgyn. Two days later I was admitted for my first laparoscopy. It was such a relief to finally have a name for what was happening to me. Endometriosis. Stage III. For about two months everything was great, I was returning to the normal life of a seventeen year old (except for the fact that I was told that if I wanted kids to do it within the next year!) Then it started again. In July of the same year, I had my second lap. This time I was told that there was no reason why I should be able to wait to have kids. That was good news, as I had only been married for one month. This time I saw no improvement. Since then I have been on and off birth control pills, done the Depo shot, a round of Lupron, pain managment, and an endless supply of pain medication ranging from ultram to percocet to morphine. Nothing ever completely takes away the pain. The bright spot is that in June of 2003, I gave birth to a beautiful baby girl. The doctors had given me hope that the pregnancy may help with the endo. Unfortunatly, since then it has worsened and I am constantly bleeding. Sex is so painful and now my husband has decided that maybe the pain is all in my head. (How’s that for support?) He is in the military and we have spent the last three years in Germany. We leave to go home in six days and I am so excited, because I will be near my mom again and I will finally have that wonderful support I have so needed. If anyone is interested in corresponding with me, email me at harleesmommy@hotmail.com. Thanks, it feels so good just to share my story with women you understand exactly what I am saying.

Mandy

From the day i started my period (age 11) it was non stop pain, i remember being off school for weeks at a time with the pain. My doctor was great and put me on the pill at 14 and i totally forgot my pain untill i was 20.

After i moved to the uk i went a doctor about this continual pain, i was told that since my mother had a hysterectomy (it wasn’t anything to do with endo) then i would probably need one too in the next few years, with no explination why.

When i was 22 something happened with the pill i was given and i bled for a month and the pain was unreal. Again i was ignored. Finally after months of being told “its not that bad” i went into the doc’s and slammed my fist on the table and demanded a scan. A bit agressive, i know, but i couldn’t live like this.

After the scan i was told i may haven endo, or not. I was booked in for the lap. I waited 6 months for it, 6 months of sever pain, being sick and not sleeping, i went days with out sleep and wasn’t helped by the doc all he did was give me tramadol for the pain, it did help i suppose.

After the op, i woke up in more pain then going in. I was ignored by the nurses when i asked for help, strange men were walking in all the time, i didn’t know what was going on. They wouldn’t even let me go to the toilet or give me painkillers. When the Doc arrived she dosed me up with morphine (which had no effect) and waffeled on about endo and stuck a huge injection in my stomach.

I left that evening, not knowing anything about endo or my treatment or how bad it was. I’m lucky i have a very supportive mother who helped me through it all and found out the info i needed.

They put me through a fake menopause, at 22. Every side effect u could get i got, hot flushes, night sweaths, etc. It was awful. The pain never went away.

After 6 months of “treatment” i went back to the specialist, who looked at me asked if my periods stopped and then said “thats it your endo’s gone”, no examinations, no scans that was it. I even played dumb and asked if it would return She said never, its gone for good.

The pain continued, it took 2 months for my period to return and it still bad. I’ve recieved no further help from the doctors. And the menopause is still effecting me 6 months on.

I’m trying alternative therepy now like accupuncture and homeopathy, its helping, but not as much as i’d like.

I’m 23 now. I’ve lost my business, my life and sometimes the will to continue due to endo and the treatment. I dont even know what a decent nights sleep is anymore. Also after taking 6 tramadol a day (i did have a few happy weeks here and ther where i didn’t need them) for the past year i’ve had a reaction to them, the doctor wont give me anything else. So i’m back to square one, raw pain.

Its such a lonly thing to have, people cant see it so they dont believe it.

The only thing keeping me going is the thought of moving back to ireland and seeing what help i get there, I want my life back

When all of this started I was 19 years old and just having some pain and swelling. After all the pain and doctor’s appointments and exams, I thought that I was crazy.

My step mother is actually who had the idea that it may be endometriosis. The doctor’s never even considered it. But sure enough, the laporoscopy proved that it was in fact endometriosis. They said take your birth control and motrin. Stay healthy, exercise, and get married and get pregnant and then it will go away.

Or so they thought. I dealt with it for 3 years while I waited on my prince charming , who I married and had a child with. BUT the joy of my child was overshadowed by the feeling that something was not right.

The pain came back. And not gradually like before but with a vengence like it had been waiting there for me to deliver. A month at a time, after I stopped nursing, it got wore. First it was just the cramps and heavy bleeding. Then came the sweeling. And thent he pain that won’t stop. It feels like someone hit me with a brick int he stomach.
The nurse says, I understand , there is a pil you can take for the cramping. She deosn’t understand that it isn’t cramps. ITs knock down drag out pain. Its a struggle everyday. Its not sleeping , not eating, trying not to cry pain.

So I have to have another surgery. They wanted me to wait two weeks for a post op appointment, but I made them refer me to someone else. I will not be pput off again like I was last time. Let one of them spend a day in our shoes and say they understand. How would they feel to live with it?

Hopefully this will fix it.

I am tired of pain. I have polycystic ovaries and endometriosis. Besides that I have two herniated discs and have had two back surgeries. I cant work because I am always in pain. I am frustrated because my family still doesnt grasp the pain I am in and wants me to do normal stuff everyday. I explain to them I cant when I am in pain. Today my brother yelled at me because I didnt finish my laundry. He really made me upset but my doctor told me today not to listen to anyone that I need to not be stressed out and to let it just go over my head. Its really hard to do that. I feel like I am always explaining to people why I cant do things normally. I just want to be left alone. Anyhow, I am glad my dr. gave me that advice before I got yelled at today. I was able to handle it better.
Anyhow I want to pass the advice around about handling the stress. To not get to upset and to rest.
Have a good day.

I have joined this group in an attempt to get info on what to expect now in the aftermath of surgery. I had a laproscopic operation last Thursday, Jan. 6th, which lasted over 3 hours, unveiled stage 3 endometriosis and took 60% of one of my ovaries. My follow-up appointment with my doctor is this Friday when I’ll find out more on exactly where all he found adhesions.

I am 38 this month, and do want to have children. The doctor said I should be able to get pregnant.

Can anyone offer any advice on questions I should ask my doctor? or what I should expect from this point forward?

Thanks, Tish