Endometriosis Stories - Page 35

Kassandra Lewis
United States
Sept 2010

Hello, I was diagnosed with a severe case of endometriosis when I was only 15. I started my period when I was 12. I just recently turned 17. As long as I can remember I have had terrible cramping in my back and lower abdomen. I had a laparoscopy surgery done in summer 2009. My gyno told me and my parents that I had too much endometriosis to laser or burn off and that everything was covered. And that I would need a full hysterectomy.

After this surgery for the next year and half until now I have been on probably 7 different birth controls, every single one has made me MORE sick (when I say sick iI mean I am 24/7 nauseated, throw up constantly, migraine, light-headednesses, so bad I can hardly get up). I had to drop out of high school my junior year cause my sophomore year I only made it to school a total of 3 months and 19 days out of 9 months. I usually am always sick, I get a period most months 2, beginning and end and they usually last 9 plus days and its nowhere near light either.

When I am on my period I have to be in bed, I can't move. But see this is where I need help, not only am I only 17, and my options are already not very much to choose from, I am a foster kid have been since I was 7 years old. My health insurance is OHP because of this I occasionally see my gyno. About 5 months ago I got a 5 year IUD put in, recommended by my gyno. She told me it would be uncomfortable, getting that IUD put in was the worst pain I have ever ever experienced.

I immediately changed gynos. I got it taken out 3 days ago, it also hurt like hell. Ever since I got it taken out I have felt sick. I do not recommend the mirena IUD, after I got it not only did my periods not stop like they were supposed to, my cramping has become intense. I have been getting cramps so bad I can't sit still and it sends terrible shocks down my right leg now. My doctor had it taken out because it has made me severely depressed.

I was on percocets for the pain but now there stopping them because they don't want me to get addicted to a narcotic at such a young age. Bad news is the doctors think my endometriosis has spread to my bladder and my bowels. I went over 2 wks without emptying my bowel. It hurts terribly bad, because most of my endometriosis was found on the cul de sac that’s close to the colon. 

Sept 2010

Hello all, I am 29 yrs old, and I never had any painful periods, or any symptoms in my abdomen...but I used to have periods for 7 days...I have been married for 3 yrs now. Me and my husband started trying to conceive for about a year, but no success. Went for a pelvic scan, and the GP advised there was a cyst and had referred me to a GYN. The GYN advised I needed a laparoscopy, and after the laparoscopy, she advised I had endometriosis cyst on my right ovary, and a small endometriosis cyst on my left.

She advised she had cleared the cyst and told the chances of me conceiving naturally is very less...she advised I had severe endometriosis condition and have to go through IVF, but chances are quite less....I will be starting my IVF treatment next month..I would love to hear from people about the success rates...we were eagerly waiting for me to become pregnant, but all our hopes were just shattered when we came to know about the cysts... 

Sept 2010

I was diagnosed with endometriosis about 3 months ago, and I am only 19. There was no laparoscopy done to diagnose endometriosis, instead he said there was no need to put me through it and just did an ultrasound, and felt inside to see where it hurt. He then prescribed me lupron depot. Which by now I've had 3 shots. Some pain has subsided but honestly it feels like its not working very fast, which is quite depressing. Mainly because I had been waiting well over a year for someone to tell/help me with my problem.

I even went to one gyno who said I was making it up and was too young to have pain or painful intercourse and sent me on my way. My relationship with my boyfriend suffers because we don't have a lot of intimate moments because I have no desire for it half the time.

I feel depressed a lot of the time as well, as for some reason it is hard to deal with it. If there is no laparoscopy done, is there any real way to know that it is actually endometriosis. It makes me nervous in case there is something worse wrong. Does anyone know what happens after the 6 month lupron shots are done? as they are temporary? 

Sept 2010

I was rushed to the hospital after I had dinner with my officemates. We ate at a Thai restaurant and most of the dishes we ordered were spicy. I also had iced tea and I had about 3-4 glasses. When I finished my food, I felt a sudden intense pain in my lower abdomen. I have been experiencing aches in my lower right abdomen for a few weeks but it would go away sometimes. I was brought to ER. The doctors won't give me meds because they said I have to do a pregnancy test first.

I couldn't even talk because I was in agony so they finally decided to give me medication. After a while, they said I can go home and told me that it's a gastric ulcer. I knew it was something else. The next morning, I was in agony again. I decided to get a second opinion. I went to another hospital. I was brought to the ER again and was told that I might have appendicitis. The doctor said he would also refer me to an OB-Gyn to make sure that the pain is not coming from my ovaries.

I had an ultrasound and was told that I my right ovary is enlarged and should be removed. I was asked to sign a waiver to have it removed along with my appendix. I was in the OR for 1 1/2 hours and in the recovery room for another 2 hours. My right ovary, fallopian tube and appendix were removed. My mom and boyfriend were told that it was not a simple case of ovarian cyst. I had an abscess in my right ovary. I was fine after I was discharged from the hospital. I never had cramps in my lower abdomen again. Until I had my menstruation.

Thereafter, I would have menstrual cramps every time. When I went back to my OB for my check-up, I was told that my left ovary is slightly enlarged and that an endometrial cyst or abscess cannot be ruled out yet. I went to see another OB and had another ultrasound on my 7th day of cycle. The results still show an endometrial cyst. I want to know more about it, though I've read a lot of articles already. I want to know how I can prevent it from worsening and how I can have a normal left ovary on my next check-up.

I have changed my diet after reading articles online about endometriosis. I was given Doxicycline and Clindamycin. I was told I cannot get pregnant yet, even if I want to, because it may result in an ectopic pregnancy. I have yet to consult another OB specializing in Reproductive Endocrinology and Infertility. Someone that's highly recommended in the forums that I've read, and I'm keeping my fingers crossed. I'm hoping for 2 things: not another operation and a healthy baby soon. 

Jyoti Madanlal
South Africa
Sept 2010

Hi all. I have severe endometriosis. It gets a bit unbearable at times. Earlier this year, I had a laparotomy done. My cysts were removed. I was currently 3 weeks pregnant at the time. I had a miscarriage. Very traumatic time for both me and my husband. We so want to have a baby. Have been trying ever since then. Now, if my problems couldn't get any worse....I'm experiencing severe leg/hip pains. I know its related to endometriosis.

My gynae recommended that I take an injection called Zoladex for 4 months. 

Sabrina Donnelly
United States
Sept 2010

well my endometriosis story begins on july 17th 2001 at age 10. I started my period and from day one it was always agony. At age 11 I begin having extreme mood changes during my period. I broke things, said some horrible things to my family. At age 12 my period became heavy and I began missing school 2-3 days every month. When I started high school in 2005 at age 14 my discomfort began to get worst. I found out from another girl about how birth control can stop period cramps and I asked my mom to get on them and her response was "no, because I was too young", so I went on to home schooling and suffered another year.

By the time I was 15 I was begging my mother in tears to let me try bc pills and finally she gave in. While on the pill I developed blood clots throughout my body so I switched to a lower dose combined bc pill and still had trouble with breathing, clotting, chest pain and shortness of breath and still it wasn’t controlling my symptoms.

By 17 my GP recommended me to see an ob/gyn who on 12/22/08 at age 17 I had my very first laparoscopy and was diagnosed with stage 2 endometriosis. I quickly went through depo, mirena, 3 progesterone only pills in a period of a year and so far nothing has worked. Its been 6 months that I've been without treatment and I feel better than ever! Its been a very emotional journey for my mother, sister and I but we are working through this disease everyday.

I now am 19 years old and a student at Illinois state university studying biological sciences(pre med major) and I hope one day I can help other women who deal with this. Not only with info but also my very own personal experiences. thank you, Sabrina 

Caroline Ife
United Kingdom
Sept 2010

I underwent a total hysterectomy 12 years ago, at the age of 40, I had endometriosis, and other complications. I went through three years of heavy bleeding and many symptoms. In the end I chose to have the operation. I now find myself still having to take hrt, indivina, to help with the night sweats, which now in hindsight, I would rather have the pain and bleeding, than having to live with the sweats and sleepless nights I go through every night. I have tried weaning myself off hrt, yet still I have bad sweats. 

United States
Sept 2010

I'm a 23 y/o female who was just diagnosed with endometriosis. Here's my story. I began having pains and my menstrual cycle when I was 16 years old. My parents and doctors always thought that I started my cycle late because I was always very thin and I was very involved as a dancer. My cycle was never normal. I would have my period for 7 days every 2 weeks. Sometimes I wouldn't even have my period. My mom attributed this to my low body weight and athleticism.

When I was 16 I began throwing up before my cycle, but I never thought that that was causing a problem. I saw a paediatric GI doctor for a year and a half and he told me that all of my symptoms were in my head because all of the tests came back negative.

At 18, after 2 years of being in constant pain, I saw a GYN. She barely talked to me and she prescribed me some birth control. I began taking the bc and felt better. After 6 months, I became irregular. I went to my GYN for a follow up and I got a different doctor. This doctor wanted to do an ultrasound. Then, at 19, I was diagnosed with PCOS. I was a little scared finding this out, but I was happy to finally have an answer. I did well on the bc and really didn't have too many problems.

My pain and fatigue kept getting worse. A couple of weeks ago, I began having extreme cramps in my lower abdomen right where my appendix is located. My husband and I are both in the health care field, so we know how serious appendicitis can be. The only problem was that I didn't have a fever and my vital signs were ok. I saw an urgent care doctor who told me to go to the hospital. I went to the ER 3 times before I was admitted to the hospital for observation and further testing. In the ER they did ultrasound and CT scans. The next day I was taken to ultrasound. When I came back, my nurse informed me that they were going to do a colonoscopy on me.

So, I was already told that I couldn't have anything to eat and now they were forcing me to drink a nasty laxative. The colonoscopy came back normal, which I knew was going to happen. The next day, my potassium and magnesium levels were dangerously low. My red blood cell count was also low which made me realize that I was probably losing blood somewhere. I met with the GYN the day after my colonoscopy and he was going to send me home with pain meds. Now, I usually listen to doctors opinions, but I know when something is wrong with me. I told him to to a laparoscopy before he sent me home.

He listened to me and set the surgery up that evening. The first thing I remember after my surgery was my doctor standing over my bedside saying that I have endometriosis. I got this surgery/diagnosis the day before my 23rd birthday. The next day, my doctor told me that they removed many cysts from my uterus, they had to release my left ovary because it was adhered to my pelvic wall, and they drained about 50 cc's of blood stained fluid from my abdomen.

So, the point of my story is to stand up for yourself. Doctors are human too. You know your body better than anyone else and any doctor. If you think that something is wrong, fight for it. It took me 7 years (almost to the day) to finally get an answer and I would never have gotten it if I had let the doctors tell me that nothing was wrong. 

Stories Page 36 

› Stories page 35