Hello, I am 21 years old and have stage 2 severe endometriosis. I have been suffering with this disease since I was 14. I have seen many, many doctors, and have gone through times of hopelessness, depression, and fear.
And I have also gone through times where I was full of hope and faith. I have had two surgeries, my last one just a month ago. So far everything I have tried, birth control pill, depo lupron, depo prevera, the patch, hormone replacements, and surgeries I have found no relief.
I've gone from seeing normal gynos to endometriosis specialists. I have not have a period in over two years now. All I'm looking for is someone who can tell me that I am not alone in these symptoms and feelings.
I have joined many support groups just to get no answers. I could use support, and maybe some words of hope. Tonight I started to think that I should just do a hysterectomy. I hope that is not what I need.
But I'm becoming hopeless and I don't want to go on with all of this pain. All the best to all of you who are suffering with this condition. I give you all of my love. Brittany
I am 18 years old and have been diagnosed with severe endometriosis. Like other people that have written their stories, I cannot say that this started when I first got my period or that I knew what was going on but people never listened to me. Last year it started being really painful to have intercourse but I just dealt with it as I was not having any other symptom, so I could think what it could have been.
But then in November last year I started getting really bad aches in my groin area. They didn't come regularly, just every now and again (mainly when I least expected it) and the people I told just said they were period pains. I thought this was strange because I had never had them before. So in march I went to the doctors about it.
They told me to take gastro soothe for colic. This didn't work so I went back 2 weeks later and got tested for chlamydia and urine infections but these all came back clear. It became really unbearable, so I went to my GP (he was busy all the other times) and told me to come back whenever it felt like it was getting worse. I went back at the start of june so he put me on some painkillers and set up an appt to see a gynaecologist.
I went back to my GP the following day and he did an internal on me and bumped me up the gynaecologist list as an URGENT patient. I am hoping to be seen within the next 2 months.
I started my period the summer I was turning 11. My first period was not that bad, but from then on it was horrible, I would miss three days a month of school and the pain medicine that the Dr. would give me never helped, not to mention, my periods were always late and they would last anywhere from 7-9 days.
I even had to see an OBGYN when I was thirteen and it was extremely scary for me at the time and he told me that by being on the pill, that it would regulate my periods and it would make them lighter as well as shorter.
But it didn't work and he retired, so I started going to a female OBGYN when I was 18 and I told her of my past history and she said that I would just have to deal with it.
I finally got upset enough that she would not look into why my periods were as bad as they were, and my Grandmother had been reading about Endometriosis and recommended that I talk to her about it, but she would here none of it.
Finally, when I was 25 and newly married who is in the Navy, we had just moved from Charleston, SC our home to Groton, CT for his duty station, I was still having trouble with my periods. One night in early November I just started having a really sharp stabbing knife pain in my lower abdomen and was in pain for eight days until my Navy Dr. decided to outsource me to an OBGYN off base.
But the OBGYN Dr. I saw told me to leave and go to the ER since it was not OBGYN related, so I called my husband and we went to the ER again for the 4th time and Thank the LORD the Dr. that morning said he would get to the bottom of it and let the head Dr. at the OBGYN know about the experience I had with his doctor.
He also told him that I had a cyst on both ovaries. The cyst on the left side was the size of an orange and the right side was the size of a golfball. The next morning when I saw Dr. Auerbach I had emergency surgery that day and that is when he discovered I had stage 3 or 4 endometriosis.
I was then referred to Yale New Haven to a Fertility Specialist and I had two laparoscopic surgeries within the year for endometriosis and 12 months total on Lupron Depot shots and had to have a hysterectomy at the age of 27 years old.
Since then I have been diagnosed with being hypothyroid (underactive thyroid disease), not to mention I am 30 going on 31 now and am being seen by a Gastroenterologist to figure out whether endometriosis is back on my colon, or whether I have Crohn's Disease, Ulcerative Colitis, or possibly Lupus.
In my personal opinion I think that all of these diseases have a connection since a lot of women that I have talked to have hypothyroid disease as well as either Crohn's Disease, Ulcerative Colitis, and/or Lupus now.
I know that the Lord will get my husband and me through this trial and yes it is somewhat heartbreaking that we can't have a child together, but I know that things work together for those that love the Lord. Thanks, Ryan Campbell
Well, endometriosis is such a nightmare for those who suffer and those close to them, this is my story. I started my menses at the age of 16 years in high school, am now 34. I never experienced any problem then but after one year I started having cramps after the menses.
At the age of 18 the pain became intense and had to be admitted in hospital for close to one week, monthly after my periods with severe pains.
By the age of 24 it became impossible and the pains lasted throughout the cycle. It was during this time that I was treated for all sorts of problems, first my appendix was removed (only the right side used to pain), with zero improvement, I was taken in again and treated for brighted ovum, then ovarian cyst and pelvic inflammatory disease for several occasions.
With no success my doctor put me on birth control pills, but nothing happened to the pains. Another doctor put on depo provera in 2000 and yes, this saved me, the pains disappeared completely as long as I was on depo.
In 2005 I stopped depo with the hope of keeping my fertility on track. The pain however, came back intense and very severe. Yet another doctor advised to go for Laparoscopy, and this time (2006) endometriosis was diagnosed.
After the laparoscopy I stayed for one and half years with out pains and my menses were normal and painless. So I was like wow! at last am I free, but no, the freedom did not last long. The pains came back more severe than ever and lasting throughout the cycle.
The doctor put back on depo, so as I speak now am depending on depo to live a normal live, and my greatest fear you can imagine is that I don’t have a child, yet I cannot survive even a day without depo. I can imagine all the women who are in distress like am and only hope that one day a solution to the menace of endometriosis will be found.
Hello my name is Alia..I am 28 years old and was diagnosed with endometriosis at the age of 25.. I often wondered why I would feel such pain when it was that time of the month but I would have never guessed it was something this severe.
I would suffer with long, heavy painful periods, taking all kinds of pain medicine that would never work. I didn't understand why it wasn't detected earlier because I went to every scheduled gyn appointment, which most likely was every month.
I ended up switching doctors, and that was the best thing I could have done. I was examined very carefully, and while being examined I explained all the symptoms and pain that I had been feeling for several years. Dr. Korey took one look and noticed that I had a severe case of Endometriosis and ovarian cysts.
Although I didn't know exactly what that meant he took time and sat me down to give me information regarding this disease. Of course I was shocked and a little concerned, because it was my first time being diagnosed.
I then went forward with the information that my doctor provided, started going online, looking in books, asking questions and anything else that would give me answers.
Unfortunately I didn't have much time to do so because that next morning I was going to the hospital for emergency surgery. When performing the surgery my doctor noticed the endometriosis has grown several places, so a surgery that may only take about 2 hours took 6.
As my family waited for me to return, an assistant had to come out and explain what was found and what was being done to help. I am glad to say that because of my doctor's wisdom I still have both ovaries.
The endometriosis had grown all over my ovaries and uterus, and had then began to grown in my rectum. My last surgery had taken place in 2009 which also was successful. But if I would have waited and continued to go to the same doctor I don't know what would have happened.
If your feeling a lot of discomfort, have long cycles, pelvic pain, blood clots anything that's not normal please get another opinion... I do still suffer at times and I still do have pain, but I know that it can be treated.. Thank you for allowing me to share my story...
I'm now 27 and I was diagnosed with Endometriosis at the age of 19. I knew something was wrong long before then. I've always had bad periods, very bad pain and heavy clots. I've had two surgeries and I am actually going to see my obgyn tomorrow to do some tests to see if I need another surgery.
It has been 5 years since my last surgery. The symptoms have come back even more severe as well as additional symptoms. I now have severe cramping in my tummy on both sides, back pain, rectum pain, leg cramps and bad headaches.
As well as those I've gained weight out of the blue, I'm always tired, depressed a lot among other psychological effects. This feels like a sentence as it prevents me from have a normal life and I'm incapable of having a regular 9-5 job. Stress triggers it off very easily.
I was actually diagnosed with endometriosis in 2003. I was working nights and attempting to work through the pain - one night, I collapsed and ended up in the ER for 9 hours. The doctors thought I either had a hernia (due to my job - lifting or something) or a tubal pregnancy.
After the trip to the ER I was set up for exploratory surgery where I was diagnosed - however looking over my medical records from when my first son was born, I was diagnosed with it in 1997 - my doctor "accidentally" forgot to tell me that.
After the exploratory surgery, I was able to get pregnant a second time - finally. I delivered my second child in September of 2004. But due to having both my children c-sections, it never went away and the pain continued to grow. In 2008 the pain was getting so bad that I could hardly walk. I had been seeing doctors, they put me on many different birth control pills and nothing worked.
I was prescribed vicodin for the pain, which barely touched it. In April 2009 I was scheduled for a partial hysterectomy. I was nervous but happy that I got to keep my ovaries.
The surgery went horribly. The simple procedure went terribly wrong, The doctor had hit a blood vessel and I lost 4 units of blood, which after some research, I found that in reality I lost half of my blood. I was in surgery for 9 1/2 hours. It was horrible!
After surgery, my doctor had said he was unaware how much pain I was in, he was amazed at how I tolerated the pain for so long. He took pictures and when asked if I wanted to see them, I declined.
I didn't want that to be a part of my life ever again. Now just over a year later, the pain is back at almost full force again. I try to exercise and it seems pointless because I am in constant pain.
Its scary to know that this is a part of my life and I will never be healed. I am running out of options for pain management, I've tried almost every option out there and yes they work, but its only temporary.
I wish endometriosis was taken more seriously by doctors - through the whole ordeal, I had been to 4 different doctors and in the long run, only 2 believed the extent of my situation.
I have always had severe cramping with my periods but thought most women did. I am 38 and so tired of this pain! My GYN put me on birth control and it helped with the bleeding for a while. I hurt everyday of my life. I bleed 27 out of 30 days, How do people live with this?
My husband first thought I was just being weak; so now I don't even say anything. New symptom: so tired all the time. GYN mentioned hysterectomy; I am afraid. I am an emotional mess. And don't know if I can handle this. I need help. I have no insurance, no money, and no hope.
Hi, my name is Loren and I'm twenty-four years old. I'v been dealing with ovarian cysts since I was fourteen or fifteen years old. Since I started my menstrual cycle, it has been very heavy and very painful. I am constantly tired. I have no appetite. Everything I have read about endometriosis matches what I am feeling.
In the last year I have been to the ER over ten times for abdominal pain with the diagnosis of ovarian cysts. I have been referred to a GI doctor who couldn't find anything wrong. I have been accused of faking my pain for medication. My GYN diagnosed me with poly-cystic ovary and put me on Yaz birth control. The pain continues with a lovely new side effect of bleeding constantly. It is not a heavy flow and it is a brownish color.
Every woman in my family has had endometriosis and has had hysterectomy at an early age, yet the doctors still refuse to look into it. I don't know what to do any more.
At the age of 17 I was diagnosed with having PID. During the time and throughout the next 2 1/2 years, I had no insurance. Constantly I was in and out of the emergency room, always in absolutely unbearable pain. But every doctor in the ER that I had seen labelled this issue as being PID, and considering it was lasting so long, they had also deemed it chronic.
Now at 21, I recently got insurance and immediately began seeing a Doctor/GYN. I explained the past 3 years to him, from start to finish and had even brought every single emergency room paper I had ever gotten to a visit.
Well a pelvic exam was done, but just the other day I received horrible news. The entire time I was told it was chronic PID, but instead I've had endometriosis and the particles have found their way into my colon and intestines.
As of yet no move has been made or planned as this is recently discovered information, and I truly fear what may happen to me. But I am sending this in hopes that others will learn -- if something feels wrong, get it looked at. Even without insurance, there is SOMEONE out there that will be willing to help.
Stories - Page 34