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Chassidy’s Story (Endometriosis)

Chassidy's Story (Endometriosis)Hello ladies, I am new to the group and thought I would share my story. Mine is a bit different than a lot of the other stories. Growing up I had no problems with my periods, they weren’t that heavy and tylenol would take care of the cramping. In 2005, I had to have an emergency c-section with my first daugther. Everything went fine and I had no problems. In 11/2008 I had my second c-section (by a different doctor) and also had my tubes tied and this is where my hell on earth started from. I had severe back and abdominal pain, I was in pain 24/7. I did some research and everything kept coming up as Endometriosis, so I went back to my doc and he said “no, it’s just GI issues” – I never went back because I knew he was wrong. It took me until 7/2009 to find a doctor that believed me. He found that I had 4th stage endo and almost all of my organs were glued together. After many surgeries I finally had to have a full hysterectomy and the pain has NEVER gone away. Well I got to talking with one of my friends and we discovered that she went to the same doc that I did for my 2nd c-section and to get my tubes tied. Sadly she is now begining to have the same symptoms as I did and we both fear that she may now have endo. She is going to meet my new doc and have him diagnose her. However, this sparked an idea for me, that doctors that are doing c-sections may accidently be ‘giving’ us endo by allowing the endrium (sp) that should be inside of our uterus get outside of the uterus or even in the open insicion site. So I was wondering if anyone could help me, I would like to know if any other women on this site have had the same experience. Both my friend and I have no family history of endo or any autoimmune diseases. Thank you for taking the time to read my story and please let me know if anyone has had the same experience.

Submitted 5-10-11

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. Melody

    I was diagnosed with endometriosis when I was 17. I had heavy periods, lots of cramping and lower back pain. I had 3 laparoscopies and each time the dr told me that he saw some endo but not enough to cause all the pain I was in (doubled over and could barely walk). The last lap showed more endo. My OB/GYN wanted me to start taking Lupron shots but I had had enough of the birth control route (pills, Deprovera, etc.) so I asked for a hysterectomy. After much fighting, I had a total hysterectomy 5 days after my 25th birthday . I never had any children. When I went in for my 5 week post surgery checkup, I asked the dr why I had been in so much pain. He told me that the endo was behind my uterus, all up one Fallopian tube, and had wrapped itself around a nerve and was pinching the heck out of it. He also told me they took my appendix out because there was endo on it. I don’t have any more pain from the endo but I am in surgical menopause. I take hormones daily. I hate that you’re going through this and I hope that your doctor takes you seriously and is working to help you. Is there any way they can go in and laser out some of the endo that’s still there?

    • Sissy

      Yes yes Ladies , this TOOO has plagued me since i was A TEENAGER!! it was when in 1994 they went to take out ONE Ovary and when i woke up at midnight , my doc was sitting there waiting to tell me they had cut my entire lower belly and removed BOTH ovaries due TO ENDEMETREOSIS,,(ENDO) .. i have NOT had that scar RE CUT and cleaned since then…. and believe me when i say..IT STILL AND WILL FOREVER EVER… HURT… scar tissue has grown there now and is taking over the good tissue and i believe that part of my body is just CONSUMED with Endo… i understand 100% your agony and problems with this.. its not as uncommon as people think!! .. and its VERY DANGEROUS as well.. please take care , regular check ups ( YES i should practice what i preach ) just to make sure its under control.. before your belly is swollen… where the scar is.. has Endo in my good tissue and actually is swollen OVER the scar.. im praying for you both here and i hope desperately that it doesnt plaque you all your life.. .. STAY ON TOP OF IT….. OR IT WILL!!! MUCH LOVE AND MANY HUGGS,,,<3 SISSY

    • diamond

      How do you get your doctor to listen to you? I have had surgery in 2007 and 2009. My ob/gyn doesn’t want to go in anymore. She thinks it is not the endo, but doesn’t know what it is. I have been on sveral birth control. The lupron i have been on to many to count. I have been in pain the last 7 days and they are putting me on another pain med. How many pain meds can a person be on? I am sick of living with the cramps and pain that this causes. I see my ob/gyn next month, but my prmary is trying to get her to get me in sooner. Do I stand my ground and say I want an answer and they need to look into this to see how bad it is or do I just deal with it? Then again do I try finding a different doctor?

      • shannon

        @Diamond- you should get a second opinion. No need to leave your doctor if you don’t want to just simply get a second opionion. Talk to your family and friends see who they go to and why. Find out if there certified Pelvic Physical Therapists in your area- see if this too could be an option- Pelvic physical therapist don’t just do urinary issues they also work with women that have pelvic pain. Ask your doctor about this route.

  2. jennifer

    I was also diagnosed with endo. I have two children. i did have heavy periods amd extreme pain with my periods. The doctors were told this but nothing was dobe. (My periods started whhen I was 12). I had my tubes tied in 2006. Then In about 2007 they took out my uterus b/c of endo. I still have pain and they say ultrasound shows cysts on ovaries. But the pain can be Intense. But everytime u go its a cyst. Now they want to take out cervix b/c of other probs but thankfully not life threatening. But I think this isn’t something I am willing to do at this point.

    I wish you the best of luck.

  3. Meaghan

    My story is very similar to yours. I had mild to bad periods growing up, but nothing that kept me home from school or work. In 2005, I had a c-section with my first daughter. In 2008, I home-birthed my second daughter. It was a VERY difficult birth, she turned breech during labor and got stuck i the birth canal. My midwife had to pull her out. After nursing her for 18 months, I weaned her due to severe fatigue. That is when the heavy 24/7 back and abdominal pain began. 1 year later, the pain was so bad that I went to Urgent Care where they diagnosed me with PID, and discharged me to follow up with my GYN in 2 weeks due to an ovarian mass found on my Ultrasound.

    I saw my GYN in November of 2010. She immediately suspected Endo and I agreed to an immediate Diagnostic Lap 2 days later. She found Stage IV Endo with dense adhesions involving my uterus, tubes, Right Ovary, Abdominal Wall, and Bowel. My GYN removed my right ovary, both tubes and a bunch of Endometrial Implants the covered much of my abdomen. After the surgery, I had some relief for about 2 months.

    In January, (2 months later), the pain returned. I was constipated (not on pain medication) as well. My GYN started me on BCP and advised me to return a month later. 2 weeks later, I was admitted to the Hospital with a Small Bowel Obstruction. This prompted me to do a ton of research on Endometriosis (online) and start the search for a new Endo Doctor.

    In March of 2011, I had a total hysterectomy and removal of my one remaining ovary. The surgery took 5 1/2 hours because of the dense adhesions throughout my abdominal cavity. My small intestines were wrapped around my left ovary several times and most of my organs were stuck together. My surgeon, who was listed as an Endometriosis Surgeon, removed all the organs and scar tissue, but did not remove all of the Endometriosis. In the recovery room, he told my husband that he left some of the Endometriosis, but it did not matter, because, without Estrogen from my ovary, the Endometriosis would die off.

    1 month after my surgery, my pain had no improvement, it had only gotten worse (much worse than before the hysterectomy). After sending me to the ER for a CT Scan, my surgeon dismissed me from his care. He said that I had no evidence of infection from the Hysterectomy and the CT scan was negative for any problems. He referred me to a Physical Therapist for pain relief.

    Since that time, I have been to Physical Therapy, an Outpatient Integrative Pain Program, a GI Doctor, and my PCP to find out WHY I am still having pain. Noone has any idea or inclination to look for a cause.

    I am going to a new place. A teaching hospital in my area has a Womens Health Center with a Specialty Department for Abdominal & Pelvic Health. I am hoping I will find some answers there.

    This disease has been devastating. I am in daily pain, and struggle to stay the same active, loving mother and wife that I was before the pain took over my life. I am now on MS Contin (morphine) for my pain. It helps so much more than all the other meds they have tried me on, but it is not how I want to live my life! I am 41 years old and more than 6 Doctors in the past 6 months have told me that my pain is either a) in my head, or b) non-curable.

    I am a strong woman. I gave birth to my second daughter at home, after 2 days of labor. She came out of me sideways. I know I can handle pain, and I have been treated by most Doctors, like I am exaggerating or faking my pain. I have never been so low.

    I am certain of several things (my opinion, not fact): 1. that my endo started when I had my c-section and stayed dormant until 2010 due to the hormonal suppression of lactation. Endometriosis is the presence of endometrial tissue found outside the uterus—during a c-section, the uterus can literally be turned inside out, just seems like common sense that the endometrial tissue would escape into the abdominal cavity! 2. That Endo must be excised or lasered off for optimal pain relief. Endo has it’s own estrogen supply! Castration is not definitive treatment for Endometriosis. 3. My pain is REAL, and I am not a crazy. 4. I will continue to fight this disease until I get my life back. Call me crazy, but don’t count me dead yet.

    My fight continues.

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