no end in sight Contributed by harleesmommy

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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

lupron effects Contributed by jennypeck

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i was diagnosed with endometriosis on march 17 2005. my doctor started my lupron shots after my laproscopy and the side effects have been pretty horendous. i was just wondering if anyone else has had some problems with the shot. not long after my first shot i developed hot flashes, mood swings, leg pains, severe depression, anxiety and really bad insomnia. its just been pretty difficult to deal with all around. im pretty much pain free for now but the after effects have been hard on me.

My story Contributed by kalie_mir

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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

They said it would go away. Contributed by mrscmharris

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.

Tired of Pain Contributed by Calialis

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.

Stage 3, post-surgery, and wondering what now… Contributed by tishjackson67

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

My Secret Battle Contributed by mewsic

My name is Sarah and I was diagnosed with endometriosis on July 18,2002 after my first lap, 2 days before my 21st birthday. This is my story.

I felt that undescribable pain for the first time when I was 12yrs old. My mom rushed me to our family doctor who told us I had cysts and put me on pain killers. For 4yrs I fought painful periods that would cause me to miss school and pass out from pain. Not to mention the everyday pain and fatigue. Finally at 16 the 3rd OBGYN I went to see put me on birth control and differnt pain meds. This seemed to help for a while, but I was still missing school. The pain was bad, but the fatigue was the worst. While my friends were out having fun, I was home sleeping.
My sophmore year of college I ended up in the emergency room after a large cyst burst. My 4th OBGYN put me on antibiotics to clean out the leftovers. When the pain never subsided she did an ultrasound, couldn’t see anything ,and told me I might have cancer! Then, when those tests didn’t come out she basically told me she didn’t know what was wrong with me, and maybe it was all in my head. Fortunately I met a girl at college that had been diagnosed with endo. She told me about her symptons and I was thrilled! It sounded JUST like I felt! After looking for a doctor for 3 months I found one back home who would at least THINK about me having ENDO. However, she informed I was TOO YOUNG to have it! She put me on a different birth control and new pain pills which seemed to work for almost a year.
After that year passed the pain gradually came back and became more and more crippling. My doctor refused a lap and so I switched again. This new doctor met with me once and scheduled the lap for a month later. The surgery went great and she removed several large patches of endo on the top of my uterus. It had even glued one of my ovaries to the top of my uterus and she seperated them.
5 months later I was pregnant, while on birth control. Unfortunatly I miscarried early on. For some reason after the miscarriage the pain came back over 3 months time. Now I am fighting the uphill battle all over again. Last month I started on Depo. I actually have already had less pain, but it’s still there and somedays…bed and painkillers are my only option. I had trouble with bowel movements and my doctor refuses to anything else right now. I’m getting frustrated again, and I’m SO tired of switching doctors!
I think, for me, the depression, fatigue, and lack of understanding is the worst part. If I had a illness that you could see visibly there would be SO much more understanding. My family tries to be understanding, but it’s hard for them to grasp what I face everyday. My fiance left me before we even knew I was pregnant just because he didn’t want to “deal” with it anymore. I’m grateful for a site like this where I can go and not feel so alone. Thank you for all your stories and advice.

I need someone who understands. Contributed by amymag

hi my name is amy, im 22 and this is my story.

June 2004, i experienced a break through menstral bleed and was bedridden in serve pain. Once the bleeding stopped the pain continued to worsen. For the next month i was treated for every uterine infection under the sun, and after one month of constance antibiotics i was sent to my local gyno clinc. 2 Weeks later i had a laparoscopy and i was found to have endo. I had fresh and healed lesions in both my uterosacral ligments, deposits in my pouch of douglas and a patch to the right of my right uterosacral lig- it turns out it its this patch which is causing the most pain. The doctors burned what they could and when i woke up i was told i had endo, dont leave having kids too late and that was it. I have now had to quit my medical degree at uni, and for the last year i have faced each day in pain. Some days the pain is so bad i’m bedridden, other times im admitted to hospital.

It turns out i have had this disease since i was 14 and each time i complained to doctors about painful periods they told me to toughen up, which makes me want to scream since i have an extremely high pain threshold.They even took my appendix out cause they thought that was the cause of my pain when i was 18.
After my operation i began receiving a monthly depo-provera injection which caused more problems then benefits. My hair began falling out and still is, i experienced severe bouts of depression, intense back and leg pain, i began lactating, i developed an extreme case of acne and put on 20kg in 2weeks and i was going to the gym!!! I have to admitted not having a period was nice, but the pain didnt improve. So this yr i beagn taking zoldax, my breasts have gone from a nice c cup to a double d, the stretch marks on my breasts are really depressing, my acne has gotten worse- which is terrible because i was lucky enough not to have it during my teens. Ive put on a few more kilos and after all this im no better off.
Today i have been referred to a specilist in sydney but thats a 2month wait, and they are telling me they are going to do another laparo but this time cut out the deposits. But they cant guarantee this will work. I asked the doctor today what happens if it doesnt work and she looked at me and said long term pain medication.
So tonight i sit here ready to scream, knowing my uni career is slowing slipping away from me and facing a future of constance pain. I need some help from someone who really understands what im going through. My fiance has tried to be supportive, but the whole no sex thing is really causing him some grief. I dread the words do you want to fool around because each time we try i end up in tears, in agony and this is a minute into the whole ordeal. I feel fat, unsexy and seriously not in the mood and i wish he’d understand.
So plz if anyone can offer some help, words of advice or a shoulder to cry on id be forever grateful. Amy

Urgent Help Needed! Contributed by coachkm03

I recently had a Ultrasound, and it showed a cyst on my last remaining ovary. I had a hysterectomy last year (one year ago). The cyst is normal size, but I have severe pain. The Doc. seems to think the endo is back.

He put me on a MILD scrip, which doesn’t work, and he won’t prescribe narcotics. I am faced with my family going through my pain again, and not being a mom, like I want to be. It isn’t fair for them, that I have this, nor my husband. He is frustrated. I don’t know if I should just have the last ovary removed at the age of 29. I want it to just go away. I heard that if you remove everything, and go in to menopause it should cease. Is that accurate? I could really use some help and advice. Please email me – coachkm03@yahoo.com And thank you!

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