Endometriosis Stories - Page 42

Trish Henderson
United States

My story began at about age 12 when I first started my period. Heavy bleeding. Would go through many changes of clothes and pads. The cramps were extreme. They continued to get worse throughout the years. At age 18, I started trade school, got my period and passed out from the pain. Had to be wheeled out in a wheelchair.

Even my pulse got very weak and I was as pale as a ghost. After passing out in school, I was taken to the gynaecologist that week. She put me on birth control pills. I continued to take my birth control pills faithfully everyday at the same time over the years.

I also didn't want any pregnancy til I was married. I continued to suffer with the cramps despite the birth control pills. But I would take Aleve and within 20 min they would be gone. I almost never missed a day of work. I started to suffer from severe stomach pain every couple of months. Some episodes were so severe that it would send me to ER.

I would end up screaming in pain and they would just put me on viocodin or lortabs. They kept running tests but couldn't pinpoint what it was. IBS, Crohnes or Colitis was suggested. Then when I was screaming during a pelvic exam the dr suggested endometriosis.

He recommended a laparoscopy. I didn't have medical insurance at the time and couldn't afford a laparoscopy. So I dismissed the possibility of endometriosis. I continued to live my life yet I continued to suffer with the stomach pain. It wasn't all the time. I sometimes would go a month or two pain free. My life was completely turned upside down last summer of 2010.

I had just turned 34 years old in late June. I started having more episodes of stomach pain. I knew something was very wrong when I was running to the restroom every 30 min to pass blood. Blood and mucus. My stomach was so bloated, that I looked like I was pregnant. I was worried because my grandma had died of colon cancer.

I went to a gastro-enterologist and he ordered a colonoscopy. Labor Day weekend came and I went to Pensacola, Florida with my now fiancée. I was still in agony the whole trip and couldn't eat much. Was still running to the bathroom constantly to pass loads of blood. Came back home from the trip, and started the dreaded clean-out process for my colonoscopy.

During the clean-out, I got extremely sick. After the 3rd glass of mirilax, started to projectile vomit. And I couldn't stop. Extreme cramping. Sat on the toilet crying and screaming in agony all night. My mom took me to my test at the hospital and things did not go well at all.

When I woke up from my test, I was still extremely sick. I was still vomiting and having extreme stomach aches. The dr said he found a blockage in my colon and was unable to get past it even with a paediatric scope. He wanted to admit me to the hospital.

Even though I was in extreme pain, I begged my mom to take me home. I was just sick from the test and I would be fine in a few hours. When I got home, I got worse. The stomach pain was the worst I believe humanly possible. I continued to throw up and was screaming in agony. I couldn't even drink water and was lying in bed barely able to move.

My mom ended up rushing me to ER at 3 a.m. X-rays were done and the news was not good. About an hour or so later, Dr came into the room and said the words I will never forget. I am sorry but I wish I had better news.

It looks like it is cancer and it has spread to your lymph nodes. He started talking about chemo and radiation. I thought this was it I am only 34 years old and I am going to die. My parents started crying but I was too much in shock to even react. Of course, they immediately admitted me to the hospital.

Instead of operating on me right away, they treated me with antibiotics through my IV. And of course I was put on NPO. The pain was so extreme that even morphine wasn't helping. They still wasn't sure if I had cancer.

They thought it could also still be chrones or colitis. The Dr said if they couldn't clear the blockage with antibiotics, they they would have to operate. And a colostomy bag was very likely. The Colostomy scared me more than anything. He said it would only be for 12 weeks then be reversed.

I steadily grew worse and on the 3rd day they operated. September 13, 2010 changed my life forever. Good news it wasn't cancer. It was stage 4 endometriosis. Worse case the dr has ever seen he told me. My colon was in very bad shape. He had to take a foot out, even had to remove some of my rectum as well as my left ovary.

And yes I ended up with the dreaded colostomy bag. And instead of it only being for 12 weeks, he said it would be for at least 6 months! How could I live with a nasty colostomy bag for 6 months? I stayed in the hospital for 13 horrible days.

I had lots of complications. I caught an infection in the hospital and had a fever spike to 105. My heart rate spiked to 190 and was on an EKG for several days. I had severe nausea and couldn't hold anything down. An NG tube was placed. Totally horrible experience and two nurses had to hold me down.

I didn't think I would ever be able to go home but finally after 13 days I did. Home health had to come over and help me with my ostomy needs. It took a few days to learn how to change out the bag myself. I was extremely depressed and didn't think I would leave the house for 6 months.

But after 6 weeks I returned to my job in retail working full time. Working with the bag was hard and I had several leaks. Hated always having to bring supplies and clothes everywhere I went. I didn't stay a hermit for very long.

My fiancee proposed the day before Halloween. All while I had the colostomy bag I hated. I went on rollercoaster’s, ice skated, went to concerts, weddings and family events all while having my colostomy. And I went through monthly injections of Lupron Depot to hopefully put my endometriosis in remission. Which it did.

On March 16, 2011, I went to the get the colostomy reversed. However, that reversal partially failed. Too much scar tissue around the rectum. Surgeon had to handstitch my colon back together. And I ended up with a temporary ileostomy.

I was very angry when I woke up with the bag still. I was very depressed. I was also very sick from the ileostomy. Had severe nausea and threw up for about 3 weeks after the surgery. Couldn't keep anything down and lost a lot of weight. Even had to go to the ER several times to get IV's.

Eventually I started to feel better, but couldn't get used to the ileostomy. It was worse than the colostomy and the output was constant. I would also have leaks all the time. Was sick of stripping my bedsheets in the middle of the night and getting no sleep. My skin was on fire.

Finally in desperation I ended up getting an ostomy belt. Leaks were far in between after that. The ileostomy was supposed to be for 12 weeks. But I was so determined to get rid of the bag. I ended up healing in 9 weeks. On May 18, 2011 my ileostomy was reversed. Felt so great to be bag free and going to the bathroom the natural way again.

I was out of the hospital in 2 days. I was back to my normal life almost immediately despite running to the bathroom several times a day. Only 6 days out of surgery ended back in ER with severe vomiting. Had a kink in my intestine. Was in the hospital 4 days while they rested my intestine.

Life is now great and back to normal. I still am on the lupron Depot shot and currently in remission from stage 4 endometriosis. I still have my ileostomy scar and huge scar down my stomach to remind me.

My tube and remaining ovary looks good the Dr says. I am getting married on December 2nd and we will be trying for a family. My odds of getting pregnant naturally are low but I won't give up hope. Wanted to share my story to educate others on this horrible and sometimes silent disease. 

Michelle O'Malley
United States
July 2011

Hello, I was told I have endometriosis when I was 16 was on lupron, and 4 laparoscopy, and told I would never have kids, but 4 wonderful kids later and me now being 33. The endometriosis has come back full force, I am off work due to this. I have been to so many DR that say the Mirena I am on should work, Well I found out that the Mirena is not good when you have endometriosis due to it causing cysts.

I also found out after my last ct scan that it is not doing anything but keeping me from having my period, but it is not thinning out the lining. So on top of the 4cm cyst and enlarged ovary and 3 cysts on my other ovary. I am in so much agony, and I go see yet another Dr Aug 3rd. I hope and pray he says lets take it out. 

United Kingdom

I was 18 when I was diagnosed with endometriosis. As soon as I'd started my periods I knew something was wrong, I was constantly in pain, & by the age of 15, I was bleeding constantly, very heavily. It affected my confidence as I was scared to go out in case I had an accident & 'leaked'. I had to wear a tampon & a sanitary towel at the same time as I would bleed so heavily.

After so long of suffering with constant agony and a forever lasting period, I went to the doctors. I kept getting told that I was over-reacting, and that it was probably just something called 'middle bleeding'.

I tried all kinds of contraceptive methods to see if anything would make a difference, I tried the pill first, this did nothing but make things worse, my pain was still very severe. I was still constantly bleeding, & I even started getting acne.

I tried the implant after that, this was by far the worst, the doctor that put it in for me didn't put it in right (I hate needles as it is!) so another doctor had to take over and eventually it was inserted correctly.

I was told to wait at least a month to see any changes, I did so, and after a month I was still in agony, still bleeding & my skin had flared up again. I was then recommended to try the injection, I had a couple of these but it didn't do anything for me either, I had near enough given up.

My pain began getting worse, & I noticed that the left side of my stomach was very tender, I kept getting stabbing pains, & eventually my stomach began to swell up on the left hand side. It got so bad that I would become sick, & sometimes get close to passing out.

I went to the doctors, where I had a scan, & they told me I had a 'small' cyst on my left ovary, they sent the scan pictures off to a gynaecologist clinic. I heard nothing for a while, & then I was contacted by a local gynae surgeon. I went to an appointment with her, & she suggested I try the mirena coil..

We agreed that because I was only 17 at the time, it would be best if the coil was put in while I was under anaesthetic. At this time, my Mom was still worried that we hadn't yet heard anything else about the cyst that had been found on my ovary, & she asked if it would be possible to have a laparoscopy, to check for any more cysts & remove the one that had been spotted on the scan. The consultant agreed, & a date was set for my surgery.

After waking up from the surgery the surgeon told me that they had drained the cyst on my ovary, and that it had actually grown to the size of a large orange, & was twisting around my ovary causing my stomach to swell, & the sharp stabbing pains I'd been experiencing.

I was then told that I had stage 2-3 endometriosis. She said it was a good job my Mom had asked for me to have the laparoscopy, but that the coil should help prevent any future cysts.

I waited a few months after my surgery & then returned for a check up with the gynae surgeon, she gave me a scan, & concluded that no more cysts could be found, but to pop back in if the symptoms returned at all. It's been a year now since I had the coil fitted, & I must say It's the best thing I've ever done.

I haven't bled at all since then & my pain is now pretty much non- existent. I do get worried about what will happen when I want children, but until then I'm a lot happier & grateful that I've now got a proper diagnosis.

I would just like to stress to anyone who feels that they are not getting the support they want from their GP, just keep pressing them & you will get somewhere. It took me over a year, but I've finally got some answers... Good Luck! 

New Zealand
Aug 2011

Hi, I've had endometriosis since age 12, severe cramps and extremely heavy bleeding to the point of not being able to move. Missed on average of 8 days of school each month, get all symptoms of endometriosis you can imagine, feel like my appendix has burst or that I'm having contractions.

Put on the pill and only have period every 3 months now (age 24), still severe and having a week off work. Had laparoscopy and it did nothing except confirm endometriosis. Don't know what to do next. 

Stories Page 43