I was first told I had endometriosis when i was 21, but looking back the doctors think I had it as early as 11 years old when I got my first period. My periods were so bad they lasted 8 days of solid bleeding. I joined the navy when I was 21, had problems still with bad periods, had all the test, a laparoscopy and was told I have endometriosis.
Over the next 11 years I had a laparoscopy or two a year, 6 IVF treatments. Both tubes removed, endometriosis removed from my bowel, then another IVF treatment, fell pregnant. Still not well on provera once again, I have tried all the treatments, nothing works. Going for another laparoscopy soon when I can work myself up to it. After being told my next laparoscopy could be removal of ovaries, its not a nice thing to have. I‘m 38 yrs old and have lived on medication since I was 21. thanks for listening.
I have been diagnosed with endometriosis for 3 years now. When I first started my period around age 15 I immediately had the painful cramping. I would miss 2 or more days of school each month and I would lay in my bed rocking back and forth in the foetal position. Tylenol did not even come close to touching the pain. My mom finally took me to the gynaecologist. He put me on birth control. It helped a little in the beginning, but so many people told me that the cramps was just a normal affect of my period.
So not knowing any better I stayed quite for many years. After the birth of my oldest daughter I started to have bad cramping in my back all through the month. I went to the doctor and found out that I had scoliosis and so he told me I would have chronic back problems for the rest of my life. I took that at face value and again just tried my best to ignore it. 2 years later my husband and I decided it was time to try for another baby.
We had had severe marriage problems, mostly due to my horrible mood swings. I had had severe bouts of depression, sometimes resulting to thoughts of suicide. I was finally on the ortho evra patch, and I have to say that was the best thing to happen to me in a long time. The cramping went away along with the mood swings. My weight was finally stable. Since I had become pregnant without trying with my first, I thought it would be no problem to become pregnant a second time. I was wrong.
It took us a year, along with a lot of praying to get pregnant again. I almost suffered a miss-carriage due to the fact that my cervix started to bleed. I was blessed to have my daughter without any more complications, but afterwords the pain and mood swings came in full force. I put on 14 pounds during my pregnancy, but put on 45 after my pregnancy.
I have had problems with my bowels that mock IBS. I have severe GIRDS. I recently had pre-stage cervical cancer (this unbelievably on a cervix that is nearly calcified from the endometriosis.) My pain is getting worse and I have had trouble holding urine in my bladder. I went to the ER for cramping and found out after several tests that I was suffering from Colon Spasms that nearly knocked me out because of it. I was suffering from extreme constipation and now have to be on Polyethylene Glycol daily to prevent constipation and severe cramping.
No one in my husbands family nor he understands what I am going through. My sister also has Endometriosis. Hers was so severe that she had a total hysterectomy, but that only dulled the problems. She still has symptoms, acne problems, weight gain, gastrointestinal problems and depression. I am a full time mother, I work 25+ hours a week, and I am nearly a full time college student.
So many people have never even heard of the illness. My professors are unsympathetic and have threatened to kick me out of class. Intercourse is painful and even if it is not, then I cramp and swell so badly afterwards that I look as though I am 4 months pregnant. I have an endless supply of sweat pants that I wear every time I cramp, and I have more acne at age 31 then I did at 16.
I go through bouts of depression. I am scared to try a new doctor because everyone’s answer seems to be hysterectomy and I refuse to go there. Some days I am too tired to even get up. I may not have pain that day, but it seems to difficult to even raise myself up to go to the bathroom. How do you explain and illness that has no definite pattern. How do you make your professors believe you and not think you are making it all up just to get out of class?
Throughout my life I suffered with unbearable cramps. The Drs just gave me medication, telling me it was regular cramps. I would drag myself to work, in a daze, exhausted. Most days I would go through 15-20 tampons due to the bleeding. However I had no choice but to keep working and being productive.
When I was 32 the problem became so unbearable I would have to pull my car over to the side of the road 2-3 times each day on my way to work. I ground my teeth so badly from the pain I went through 2 dental bridges. Finally at 33 I passed out on the floor one morning. My boyfriend called the ambulance. When I arrived at the hospital they suspected an STD. I was poked and prodded.
Finally got an appointment to a specialist who pre-diagnosed me with endometriosis and definite bi-lateral cysts. Scheduled me for a laparoscopy in 60 days. Two weeks later I was rushed to emergency room due to endometriosis on my small intestines had caused them to twist. They sliced me open for that (horrible scar!) and then scheduled me for a laparoscopy two weeks later.
The dr. removed massive cysts during the laparoscopy and also major amounts of endometriosis. It’s been 90 days and I am on the strict diet, lets hope it helps. Would never consider having a biological child. I am just focused on trying to be productive in this world and contribute, if we decide to be parents will definitely adopt as this disease is genetic and would not wish to inflict this on future generations. I can't understand why anyone would be so selfish that they would want to pass this painful disease on. Glad that this was discovered and I pray it stays away for good.
I just recently got married in April 2009 after being with my now husband for 7 years. But I have had to deal with debilitating pain symptoms almost everyday since my period first started when I was 13. Going to doctor after doctor and hearing them tell me I was crazy and its all in my head, was really starting to get me down.
All they did/would do for me was put me on birth control pills. I finally found a doctor in August of 2008 that believed me and thought something was really wrong. She said she thought I might have endometriosis. I had a laparoscopy done in December 2008; it showed that I indeed had endometriosis. They classified my case as mild to moderate endometriosis. After the surgery, she explained to me that I had adhesions on my descending colon, uterus, ovaries, and cul-de-sac. She took out what she could but informed me that there was still quite a bit she couldn’t get to.
She instructed me to try diets, massages, exercise, ice pack, heating pad, and nothing ended up helping me. Since August 2008, I had tried the following medications to try to relieve my pain; Ibuprofen, Naproxen, Prozac, Elavil, Vicodin, Darvocet, Tramodal, Perocet, & Oxycoton. After numerous trips to the ER, I followed instructions and just continued with the birth control pills because she said there was nothing else she could do.
In April 2009 she suggested I try to conceive since my condition went untreated / undiagnosed for so long, it was worse than it should be and the sooner the better. In August 2009 after no luck of trying to conceive, I agreed to start the 6 month treatment of Lupron. I had my first shot of Lupron August 7th 2009. They said my pain would get worse before it got better; well they were right.
In the next two months, I had been in the ER six times with severe abdominal distress. August 23rd was a night I’ll never be able to forget. I was in the most agony I have ever been in. Frustrated that everything I had tried or done wasn’t and never helps relieve my pain. So I started cutting my forearm. Once I realized what I had done, I called a friend whom I knew could get to me the fastest. When he arrived, I just showed him my bloody arm. The next thing I knew I was being wheeled away and taken to the nearest hospital. I didn’t want to die; my intentions were not to kill myself. My intentions were more to get myself focus on something else, some other kind of pain.
I was sent to a psychiatric hospital where I spent two days. I as well as the doctors there, agreed that I wasn’t a harm to myself and that I just needed something to control all the agony I was having. I then saw a pain management doctor who now has me on Loestrin, Oxycoton, Elavil & Perocet. I absolutely hate having to take these medications every day, but if I don’t, I am in constant pain and spending more money going to the ER.
I feel so sorry for my husband; we cannot even have intercourse. I am so grateful that he understands and is there to help me through this. My symptoms are very random and so intense I can barely move. It is so unfortunate that women have to live like this; I do everything in my power to wear a smile and continue on with my everyday life, but it is all a cover-up of what I’m really going through.
As a young girl I watched my mom suffer in agony every month around her period. My mom is the toughest woman I know, served in the military and the national guard and yet her periods keep her in bed for 3 days. So, when my symptoms started to get bad at the end of high school I thought it was normal. It wasn't until college when I joined a sorority and was surrounded by a 100 other young women that I realized something wasn't right. No one else in my sorority seemed to suffer from the same symptoms I did. I thought maybe I was weaker, so I suffered in silence...calling off work, missing class, and hiding in my room for 2 or 3 days until the pain and uncontrollable bleeding stopped.
I was not a "doctor" person but after 2 years of begging from my mother, I finally went to the gyno. I went to two gynecologist who both told me cramps were "normal" and threw birth control at me. I even opened up to the second gynecologist about how painful intercourse was and that I would bleed heavily during/afterwards. She told me it was the "position". I was mortified. Throughout college, endometriosis kept me from doing a lot of things and my grades certainly suffered. When I graduated and entered the work force things only got worse.
I then chose a gyno who specialized in endometriosis. When I explained to him everything that was going on he told me about endometriosis and scheduled me for laparoscopic surgery. Sure enough, it was covering my uterus, intestine, bladder, and rectum. He told me afterwards that he thinks due to the severity of my endometriosis it will be difficult for me to get pregnant and I should try to start having kids as soon as possible.
I told him I wasn't even married yet! So, he put me on birth control and told me to come back in 6 months. I liked him, I trusted him, he was the only doctor who has listened to me so far. This isn't where my story stops. Since my surgery in March 2009 it almost seems as though things have gotten worse. While the birth control was controlling the period symptoms, I was in pain everyday now because of my bowels.
I would be driving to work and all of a sudden start screaming in pain and have to pull over. My gyno told me women with endometriosis often have "IBS" and put me on Bentyl. The pain led to nausea, then vomiting, and horrible cramps after every meal. My regular physician added Pheneagan, Naproxen, and Prilosec to the Bentyl and birth control.
Needless to say I became moody, emotional, agitated, and exhausted from all the meds. I lost 15 pounds in 2 months (I had lost 20 before that so a total of 35 pounds) on my already "normal" sized figure. Long story short....we still don't know what's wrong with my intestine. I have a regular physician and a gastro-entologist. They've ran minor blood work but everything comes back negative. They don't think it is related to the endometriosis because I "just had surgery", and it wouldn't be back so soon.
I have finally said enough is enough. I started to see a chiropractor who studies natural medicine. I heard about him through several people who have seen him for various reasons. I have stopped ALL meds and take all supplements. I am on a very strict diet...no red meats, no wheat/gluten, no dairy, no sugars/candy, etc. Mostly organic and NO foods with preservatives and MSGs. All my emotional problems and mood swings are gone (my boyfriend is relieved!). I still have bowel problems but not as severe.
Finally my question is....does this sound like anyone else's story?? I am seeing a gastro-entomologist in Indianapolis in a few weeks and might have a colonoscopy done. Could my bowel problems be related to my endometriosis? My mother has lupus (she has never been diagnosed with endometriosis, but after I have suffered through it, I know she has it). There is a long line of auto-immune diseases and other female/bowel problems in my family. I am tired and sick of being in pain. It only gets worse as time passes. My boyfriend and my family are trying to be supportive but we all are confused on what exactly the problem is. I thought the laparoscopic surgery was supposed to stop the pain.
I hope someone will be kind enough to read this as I have never been diagnosed with endometriosis. I’m just concerned with what I’m experiencing and would like input from people who have it since no one will help me. The gynecologist’s solution to everything is birth control. They ignore everything I tell them and down play everything. I’m not saying I have endometriosis and I’m not looking to be diagnosed with it, I just want someone to listen.
I am almost 19 and it all started about a year ago. Different things started happening I was in pain for no apparent reason after it continued I finally realized it was related to my periods. I typed some of my symptoms in a search engine online and that is when I first learned of endometriosis. Since then I have researched it a lot. Some of my symptoms fit and some don’t. I have never had any known cysts, my periods aren’t too heavy or long, and it doesn’t run in the family (I am unaware of my fathers side though because he was adopted).
I just had a pelvic exam/pap smear I was told that everything felt normal and not like someone who had it, she said it would feel different if I had endometriosis. No abnormalities were felt. And I was told my symptoms are normal and that unless my period got really heavy or lasted longer than normal I shouldn’t worry. I had my pap smear hours ago and my stomach still hurts and is bloated.
Something just doesn't seem right to me my body has changed. Everyone just thinks its normal period cramps but I can tell the difference from cramps and pain. I’m not saying that cramps aren't painful but what I have is different. It’s like a sharp, burning, stabbing feeling in my abdomen. It’s never consistent and is unpredictable. In my back, in my hips, spreading down to my legs, in my abdomen alternating from the left to the right side. I get it frequently in my groin, the crease in between my leg and crotch. I have bad stitch when ovulating, and sex was painful for me. I even told this to my doctor and she told me to take some ibuprofen or aspirin a couple hours before sex as if I’m going to plan out each time I will have sex.
I urinate more around my period or have trouble urinating, sometimes it hurts my abdomen and sometimes it burns when I pee. I thought I had a bladder infection one time because I couldn’t pee but had to, I was up for 2 hours trying. I find out that I didn’t have any type of infection and the doctors just assume this is normal I guess.
If you've made it this far thank you for taking the time to read this and sorry it’s so long. All of you suffering from endometriosis I am so sorry. You women have so much strength and don’t let anyone tell you different, you have to deal with so much and no-one knows what you go through. I look up to you all, hang in there and maybe one day a cure will be found. Peace and Love Aubrey