Endometriosis Stories - Page 24

United States
March 2009

I don't know what to do any more...I am at the end of my rope and feel so helpless. My endometriosis started when I was 19 years old. I am now 26. I have been on every hormone pill, shot, etc available to try to minimize the endometriosis. I had laparoscopic surgeries, which helped with the pain for a few months, until the endometriosis grew back thicker than before.

I had a total hysterectomy. I was ecstatic that I was pain free for so many months. I have one ovary left. 2 months ago the pain started again. I've been to the ER twice, and have an appointment monday morning with my gyn. I have resigned myself to having another laparoscopic surgery. Will this ever end?!?!?! ~Empty in California 

March 2009

I've always had very heavy periods for as long as I could remember. I never had severe cramps, but felt like I was pouring blood when ever I got my period. Birth control pills only seemed to work for a few months or years at a time to deal with the heaviness and the length of my period. I was just diagnosed with endometriosis in the last 2 months.

I started having severe back ache in July. It got so bad I couldn't walk, and was very very sick. I was in an out of the ER 4 times over one weekend, and was finally admitted to the hospital after I saw my family doctor the following Monday. He was amazed I was even able to drive myself to the appointment. I spent the week in the hospital, had tons of tests done, and they all came back negative.

After being released from the hospital, I knew something still wasn't right. I continued having to go to the ER a few times a month for either severe cramps or nausea. My family doctor told me to see a shrink since he thought there was no physical reason for the distress I was in. I was so discouraged and thought I was going to be stuck feeling this way forever. On one visit to the hospital, a doctor did an MRI for the back ache. On the MRI it showed a cyst on my ovary. I was very quickly referred to a gyno for it.

Since I was already scheduled for surgery to have my gall bladder removed, my gyno did exploratory. He found a small deposit of endometriosis. I'm so glad to finally have a reason for my symptoms. I'm lucky to not get the pelvic pain that some people do, but the back ache is unbearable. The only meds that seem to do anything are percocet, morphine or demerol. I was recently put on Depo, but aren't too thrilled with it yet. I haven’t got my period, but the back ache still gets very severe. I also get the worst PMS I've had in my life.

I feel like a miserable person to be around. I'm so glad my fiancé has stuck by my side through it all. If anyone has any suggestions on pain meds that worked, feel free to tell me! 

United States
Mar 2009

My name is Tara. I am 20 years old. For the last 2 1/2 years I have been suffering a HUGE number of symptoms. It was causing aches in my lower area that hurt so bad I could not even barely walk. I went in for a ultrasound and the doctor told me that they found a cyst on my ovary. So the next couple months I had the pain still there, and it was getting worse and worse everyday, leading from my lower area, to my legs.

One day I had so much agony I had to go to the doctor. I went into one office and they told me that it was just the cyst causing the problem so they gave me medication, and 1 week later I was still not feeling any better so I went and got a second opinion and the doctor told me it sounded like I had endometriosis.

They scheduled me a appointment with my gyno, and told him my symptoms and he told me I was going to have to get a laparoscopy to see if I had the disease. I got my Laparoscopy and it turns out that I do have Endometriosis. I have to get a shot in the stomach of Zoladex every month for 6 months. When I found out I was very upset. To hear that I had a disease that would probably never be cured without a hysterectomy. I never thought I would be dealing with this because having children is my dream, and knowing there may be a chance that I can't really breaks my heart.

I even ended up having a miscarriage a couple months ago not even knowing I was pregnant at all. Not only is knowing what could happen bad but the pain effects everything in my life. Ever since I started having pain and found out what is wrong with me everything has changed. I am constantly thinking about pain, I am a bartender so it affects my work mood and makes it hard to walk around for a long period of time, and it makes me just miserable.

It's so bad that I wake up in the middle of a dead sleep cuz I feel this stabbing pain in my lower area. The only thing that it hasn't caused is problems with sexual intercourse. I got the shot about a week ago, and I still have a lot of symptoms. My mood is pretty bad I just don’t want to be around anybody because I feel like I will rip their head off. The dumbest things make me mad, and I can't stand talking to anybody. That's the only symptom I have received so far but then again it's only been a week. I hope I get better and can just live a normal life. 

Lauren Gere 
United States
March 2009

Well I am 20 yrs old fun outgoing girl. I first got my period when I was 16 (late bloomer I know) and I always was in severe pain on the first day of my period which everyone told me was part of being a woman, and that cramps were normal, but now at 20 yrs old I find myself awakened in sleep in agony. I am curled up in a ball crying, sweating, vomiting, rocking back and forth praying for it to stop, it truly is unbearable.

Today is march 12 2009 and I haven’t had my period since nov 21 2008 almost 4 months now. I have had pain in my tummy, aches in my back, and I have noticed a bald spot on my head which developed I guess in the last few months (not sure if its related to my endometriosis). I have had a lot of symptoms the last few months which I thought was a cyst on my ovaries, which I have had 5 cysts rupture since I was 18 so far. But I went to the obgyn yesterday and he diagnosed me with endometriosis and secondary amenorrhoea, at first it didn't seem so bad until I read all the complications that come with endometriosis.

I have no insurance so surgery is unthinkable. The doctor wants to put me on birth control pills and induce my period but I wonder it the nuva ring was maybe a cause to my period not coming. I started using the ring in aug 07 and stopped using the nuva ring april of 2008, abruptly due to my insurance being dropped.

I also heard that it may, or will be hard for me to conceive babies. I am so upset, sad and lonely now because I feel that no man will want me. I feel like I am broken and no man will marry a woman who can't make babies. In fact I feel I'm not even a woman any more - like the one thing that is the most beautiful amazing part of womanhood I cant even do! We are put on this earth to reproduce and if I can't I feel like a failure, like I have no purpose in life!

Anyways I dunno what to do, should I get on the birth control pills, should I just get the surgery, what if I choose nothing and I just wait it out and see if my period will ever come and maybe my body will ovulate again. Does anyone know what will happen if I leave it untreated. The physical pain I feel isn't really the worst part its how I feel as a woman BROKEN.

I read that infertility is the 3rd reason for divorce. This worries me so much. I am in constant pain and I don't like painkillers (percocet, vicoden) because they make me vomit and feel funny so I find myself popping 6-8 advils a day, and in the end it doesn't relive the pain. The best thing I find is a heating pad but I can't have a heating pad all day in school or at work. Please pray for me as I will pray for you as well :) sincerely lauren g 

March 2009

Well my story starts at the age of 14! When I was 14 I had this awful period, the pain was soooo bad my mum took me to the hospital. I actually then suffered urinary retention (which we later learned was just a response to the pain). Since then every second period seems to be really bad! I have been in an ambulance so many times I have lost count! I have had the surgery where they burn off the endometriosis twice, as well as a curette and tried all sorts of medications.

The best thing I found was the mirena. It made the painful periods a lot less intense, and found myself rarely needing to go to a hospital. Pregnancy is a HUGE issue for me. I have miscarried 3 times but have had a successful pregnancy (my daughter is now 16 months). We are about to start trying again. This makes me nervous... I don't know how I will go if I lose another child!

I think the best advice I can offer with people suffering this disease (having suffered it for 8 years of my 22, is not to get yourself down over it. If you are stressed or tense it seems to make matters worse! Take each day as it comes! Make sure you are properly diagnosed; before I was I had a lot of issues with doctors thinking I was drug seeking, even though I would only be in hospital every 8 weeks at worst!

There are treatments out there, and the treatments work differently for the individual! So talk to your doctor about it and find out what is best for you! For those of you trying to fall pregnant, I don't know how much advice I can offer. Only that perhaps try getting a curette every couple of years, it is how I fell pregnant with my first and only daughter! Don't stress over it, take it as it comes. If it is meant to be, then it will happen! cheers Mel 

United States
April 2009

Hello, my story is a little different. I am 26 and only just started birth control 10 months ago. Two-Three month after I started NuvaRing my hair started fallen out very badly and I started having very painful intercourse after the first month.

I had gone 2 years without intercourse prior to starting on this birth control. I had normal periods scene I was 13, only non normal thing was clots which runs in my family so I didn't think anything from it. After 3 month of NuvaRing I managed to get an appointment with a obgyn who just gave me other birth control Solias. I still had the pain and it got even worse with time 3 months later, I had constant pain daily and very bad.

I talked to some people I worked with since I worked in a hospital I was told I might have a bladder infection and I made an appointment with the obgyn at a different clinic I was treated for Honeymooner's Syndrome? A month later I was in more pain than before. I was referred to the obgyn surgeon after my pap smear and Ultrasound both came back normal.

The surgeon was confident it was endometriosis but it could have been a few other things so he did a Diagnostic Laparoscopy were I was diagnosed with severe Endometriosis. I had a blocked fallopian tube with an endometriosis cyst and endometriosis in other places, just one cyst that I know of. Since the surgery I have stopped having daily pain and it is now just with intercourse for the most part. I feel like birth control caused my endometriosis.

I am not on birth control now and I have had one miscarriage since my surgery :( !! Only being diagnosed with endometriosis for 3 months now and we want to have babies soonish, the doctor didn't want to start any kind of treatment. By the sounds of things treatment doesn't sound to effective. The doctor told me the best thing would be to get pregnant as soon as possible? Does it really help lessen endometriosis?? Am I more of a high risk now that I have endometriosis?? Is Endometriosis going to be passed on to my child??

No one else in my family seems to have it.... Why are people not educated on endometriosis?? Feel free to email, I have many questions and could use a friend to talk to about this. No one close to me has endometriosis so they don't know what I am going though :( 

May 2009

I'm 16 years old, and I think that I have endometriosis. I've been dealing with horrible pain during my period since I was 12 (when I first got it). My doctor thought that it was no big deal and that it would go away on its own. When I was 13, she put me on the pill and told me that that would get rid of the agony. It didn't.

I tried so many different kinds of birth control pills that I've lost track of them all, but nothing helped. A year later, she sent me for an ultrasound and that came back "normal". After that, she seemed to get tired of listening to me and my mom insist that there was something wrong. She told us that it kind of sounded like I had endometriosis, but she refused to consider that possibility because I was too young to have it.

She said that the pain would eventually go away on its own. We stopped seeing her. When I was 16, I started seeing a new doctor, who was slightly concerned with my symptoms, so she sent me to see a gyno. I hoped that I was finally going to find out what was wrong with me. (meanwhile, I'd been doing some research online, and I became nearly 100% sure that I have endometriosis).

When I got in to see the gyno, her assistant told me and my mom that the ultrasound that I got a couple years previously showed that there was something wrong with the dimensions of my ovaries. It was very slight, but she thought that I was something to look into. The gyno didn't seem to think so. She said that my ultrasound looked normal and that all my symptoms were normal.

Then, she proscribed Depo-Provera. Those were the worst months of my life. I got moderate-severe headaches every day, horrible acne that spread to my back and chest, severe depression (with suicidal tendencies, which is not like me at all!!), I felt like a drug addict when the medication was wearing off... (and much, much more crappy symptoms). I refused to go back to see that woman.

My best friend, Sam, and her parents were worried about me, so her mom got me in to see their doctor (who is AMAZING!!). She sent me in for an ultrasound within the week, which showed that I have cysts on my ovaries (the right more than the left). She's thinking that since I have a lot of the symptoms of endometriosis and that I have a family history of the disease, it is very possible that I have it.

I'm currently waiting to get in to see the gyno that specializes in endometriosis in my city, but I can't help but worry about my worsening symptoms, how I will be diagnosed and what treatment I can get. All treatments that I've found cause depression, and since I'm prone to medically induced depression, I'm afraid that I'll have to chose between pain and depression.

All this is really wearing me down. I'm not yet 17 and I feel like an old woman; sore, stressed and exhausted. If anyone could give me advice on how to deal, please help!!!! Thanks y'all!!! 

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