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Kate’s Story (Endometriosis)

Kate's Endometriosis StoryMy story begins in my kitchen while making dinner for my family. I was 30 years old.

I was standing at the counter talking with my son and preparing for dinner, when I had a sudden sharp stabbing pain in my left side and lower back. This pain caused me to become lightheaded and I thought I was going to faint. Almost mid sentence I stopped and started to sit on the floor of my kitchen trying not to faint. My son was there and watching this strange behavior and I did not want to scare him, so with all my strength I got up and headed to the bathroom for privacy. As I lay on the bathroom floor, eyes closed, pain worsening, I suddenly felt that strong urge to, well, let’s just say, use the bathroom. I got up and tried to go, but felt even more lightheaded and had to stop. By this time my son had gotten my husband and they were both at the door worried and wondering what was wrong. Now, I have a history of fainting with pain, so I squeaked out an “I’m fine, be out in a minute” and just like that, as suddenly as the pain came, it subsided. I still had residual back pain which has continued to this day. I tried to act like it was no big deal and went back to making dinner.

That night I started to think back, I HAVE been having some bowel issues lately, let’s see for how long now? Could I really have been having bowel issues for two years now? This is my second fainting episode in two months, both caused by pain. As I think about what’s been going on with my body, for the first time I am really scared that something bad might be happening here. The next day I went to see my family Dr. and due to my bowel complaints he sent me for a GI work up and a CT scan. The CT scan shows that I had a complex adnexal cyst on the right side and a small spot on my liver. It also showed that my IUD was mal-positioned and almost poking through my uterus. I was told that my pain was probably from the IUD and I should see a Gynecologist. The cyst scared me more than anything. I just KNEW I had cancer. But I didn’t want to scare anyone, so I stuffed it down and scheduled an appointment with Gynecology.

In the mean time I went in to the Gastroenterologist for my GI work up. Based on my symptoms she scheduled an upper endoscopy and a colonoscopy. I won’t go into the details, but I am glad that I followed through because it came back abnormal. That confirmed my fears that I had cancer. I just KNEW it. Waiting for the results was horrendous, but finally I got the call, two polyps removed were benign, good news, then they tell me that the other was an adenoma and it was positive for aggressive pre-cancerous cells. I would need to repeat the colonoscopy every two years for the rest of my life to be sure it doesn’t return and become cancer. As scary as it was to hear, I sighed with relief. It wasn’t cancer.

The next few days flew by; I was starting to feel good again until suddenly more pain, stabbing pain, aching and pressure pain. I was afraid that my cyst had ruptured and headed to the ER. I was taken back faster that I have ever been addressed at the ER. I was given pain meds and was starting to feel comfortable again. They ordered an ultrasound and I was told that my cyst was the same as before, only now they see two complex cysts, bilateral and medium sized. That fear returned. I was discharged and sent home. The next day I went to see a gynecologist; she wanted to address the IUD and removed it right then and there. It hurt like hell. But it was out. Maybe now I would start to feel better. I was in so much pain I didn’t even ask about the cysts.

I called her office the next week to make an appointment. I made sure to let them know I wanted to discuss my cysts and even faxed the reports to her office; just to be extra sure she had them in time. I eagerly arrived 15 minute early and it was confirmed that the Dr. did receive my results. When she called me back, she asked me, “So what are you here for today?” and I told her to discuss my bilateral complex cyst. (Now by this time I had read every piece of material on the internet about bilateral complex cysts and the one word that came up in each and every one was CANCER). She looked at me straight in my face and said “you don’t have cysts” I say “what!?!? I have the report right here!” I show her the report. She looks at it and says “well I’d better go look at this, I’ll be right back”. She leaves and after some time returns and says “well, I can’t see this that well on my lap top, I will need to look at this from home, for now take these birth control pills and call me in three months”. Three months! I tell her I am in too much pain, I can’t wait three months! She says it will be ok and sends me on my way.

I call her the next day to see if she had reviewed my films. The nurse called me back to say “no, I’m sorry she was just too busy, we will call you when she has looked at them”. At this time I knew I needed a different Dr. and to this day, she has never called me to give me my results. So more waiting, pain and worry.

Soon it was time for my appointment with a new Gynecologist. She was wonderful. She listened and was caring. She was the first person to tell me about endometriosis. She just barely touched on it. I was convinced it was cancer. she said she didn’t think so but we would need to look inside to be sure. I was sent to a gynecological surgeon and a laparoscopy was scheduled.

The pain seemed be consistent now, always there, always a presence, a daily reminder that something was wrong with me. I was scared that my surgery would come back to be normal and I would be left with no answers. I was scared of the surgery, the recovery and the what if’s. Finally the surgery day came. It was over before I knew it, it was over. I was still sleeping when The Dr. came in to talk with my husband. They had removed the left cyst and left fallopian tube. Still groggy and sleepy, I remember my husband saying, “They think they have figured out where your pain was coming from. They think they can help you.” and with that I was asleep again.

When I woke up I felt great. I couldn’t believe that not 5 hours ago I was in surgery. Pain medication is amazing. My husband had never heard of the word endometriosis, so having him try to relate what the Dr told him was, to say the least, confusing. But of course, I had done a lot of reading on my cysts and had come across this on the internet. I didn’t know a lot about it but I knew right away that this is what they found. Endometriosis, finally, a name to go with my symptoms. I am not crazy, the pain is not in my head, and I am not blowing this out of proportion. I have a disease that has caused all these symptoms. The biopsy came back and confirmed the diagnosis of endo and squashed my still present fears of ovarian cancer. My cysts were benign.

The recovery was better than I expected. Still painful, but better than I had imagined it to be. I felt relief and excited to move forward with getting this under control. Ready for anything that will get my life back to normal. I followed up with the Dr the next week and she diagnosed me with stage 3 borderline stage 4 endometriosis. I had lesions on my bladder (hum, that’s why I have to pee a million time a day), lesions on my abdominal wall around my fallopian tubes, ovaries, pretty much every where you can have endo, I have it. Still confident that we can treat this and I could soon feel like myself again, I say, “OK so what now?” She told me about a few options but strongly encouraged me to try Lupron injections. After reading about Lupron I was worried about trying it, but Birth control pills didn’t help and I do not want to be on chronic narcotic pain medications. Reluctantly I tried it.

It has been one month now since I have started the Lupron and I am sorry to say that my hopes of getting back to normal are slowly diminishing. I am learning how to live with chronic daily pain and as of yet I have no relief from the Lupron injections. It has only been one month and I have had minimal side effects, hot flashes, night sweats, mood swings and memory loss. It makes me laugh to think these are minimal side effects, but I am assured that they are. To be quite honest, I would trade the pain with these side effects in a heartbeat. I read the stories of other women affected by this disease and I think to myself that I am truly one of the lucky ones. My pain is not so bad that I can’t get out of bed. I can still care for my family. I can still work. I have daily pain. I have endometriosis.

Submitted 9-28-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Tia P

    Hi Kate! Hang in there….I am 38..have had the pain since 16….not diagnosed until 24….6 laparoscopies…a major abdominal surgery in 2010 for large complex ovarian cyst….now, irregular periods, heavy bleeding, return of my large cysts (with the possibilty of more surgery) and scheduled for my 3rd time with Lupron (I prefer the side effects over the pain I have). A lot of people really don’t understand the toll that this disease puts on our bodies, as well as the things the treatments does to our bodies. I can tell you one blessing you have that endometriosis hasn’t allowed me to have…a child. Hang in there. It’s a hard road. I am actually at the point where I am looking forward to menopause.:) Take care.

  2. Angie

    Hi Kate,

    Thank you for sharing your story. I am 38 and after 2 1/2 years of excruciating monthly pain, I was finally diagnosed with Endometriosis. I am preparing for my 3rd surgery in early June. I too have endo on my bladder, my pelvic bone and my abdominal wall. They have removed my uterus and a 10 cm tumor from my pelvic bone. In my next surgery, they will remove my ovaries and as much as the endo as they can. I recently started Lupron injections as well. My first shot was March 8th and my 2nd shot was April 9th. My abdomen is 3 inches larger now than it was in February, so they are scheduling me for another MRI. A lot of people don’t realize the mental toll this disease takes on a person, but as long as we stay strong and “fight like a girl” we will get through this! I pray that God will give you strength during this time and that the Lupron injections will help with your pain. Best of luck to you Kate.

  3. lele

    Kate thank you for sharing your story sounds similar to mines with the doctors who seem not to care and are quick to call cancer! I am waiting to get on Lupron my doc is also giving me a pill to take with it so I don’t feel the side effects but I have all those side effects anyway due to my pain….. crazy huh!?! well give the Lupron a few months before you give up on it. and there are natural ways that can help to! Good luck and pain free wishes!

  4. Maureen

    Hi Kate! My story is quite similar to yours. I wish you the best of luck!!

  5. Nan

    Hi Kate, I had endometriosis when I was in my twenties. I imagine I also had it in my teens. However it went undiagnosed until such time I wanted an IUD when my husband and I were planning a family. Sadly, I could not conceive. That was eons ago. Before MRIs, CTscans. I am now 60. I was alone in my illness and continued to work. There were no support groups and indeed, back then, they knew very little about this disease. To exacerbate my issues, I was the wife of a military person. So we went from one end of the country to the other. I would have loved to have this support. You mention the stages (I assume I was at stage 4 because I had to have a total hysterectomy by age 30. Before that they went in and scrapped down the areas and they took most of one ovary and all the other one. This over several operations). There was never any mention of cancer back then. No mentionof stages (I tripped across that much later in life). It was a very disheartening time for me. I figured you got married, you got pregnant and you had a family. All my siblings had children. In fact, everyone seemed to be having babies around me. Could I ask you a question? Why is it they have a yellow ribbon for endometriosis? I would like to know more about the time I spent going through this. It was a life altering time for me. I felt so bad. I so wanted a family. I was so sick and in so much pain during the menstrual cycles. Now that it would appear they know so much more, I would like to go to a trustworthy site to confirm to myself (even though I know deep down) that I was not a wuss and I did a great job coming out the other end of this disease intact. Thanks. Your story is very touching. You come across as a real pistol (full of zest and love of life and chutzpah). Thanks… Nan

  6. Kate

    Thank you for your reply; I am sorry it has taken me so long to update everyone. My story represents my first experience with Endo. My story continues (as everyone’s does)… The Lupron was not as helpful as I had hoped it to be. The pain continued despite treatment. On Lupron I had 1 pain free week per month. After that week, the pain would build, the week before my period was the worst for me. Menstruating was almost like a release for that pain, although still painful, it was a welcome change from the week prior.
    I completed 7 months of Lupron injections with little success. My GYN then recommended a Total Hysterectomy. But first, I had to have another colonoscopy just to be sure there were no more adenomas, which would be a more serious matter that would require attention before moving forward with surgery). Thankfully that came back normal! Yeah! I could now move forward with the surgery. I went to a Gyn/Oncologist and she was amazing. We discussed the options and decided on a Robotic Laparoscopic Total Hysterectomy and Oophrectomy. I am 32 years old now. She was concerned about my age and going into menopause so young. I have two fantastic kids and do not plan on anymore children. In fact, I had already had a tubal ligation. No more children from me and hopefully, soon, no more pain.

    Today I am 16 days post op. I can’t believe how fantastic I feel. I was back to work in 12 days! The post-op pain is nothing compared to the pain of Endo. I can get by on Ibuprofen, if I even need Ibuprofen. I had major surgery 16 days ago and today I have not even had an ibuprofen! It’s hard to even believe that I that I had my uterus, cervix, ovaries and the last remaining fallopian tube removed as well as ablation to remove endo in the abdomen only 16 days ago! I ran up the stairs today! It wasn’t until after I did it that I thought… “Oh crap, should I be running?”…lol…
    I have not yet had my post op appointment for pathology results, (they called and pushed it back two weeks -I imagine that if pathology was bad, they wouldn’t push my post op appointment out two weeks). At this point I hardly care, I just feel great.
    If anyone has any questions about Endo, Robotic Hysterectomy, or just want to chat. Let me know!


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