Share Your Story : Lauren

1525183_10152962378698902_798266852817504088_nLauren was diagnosed in 2011.   She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits.  Her story is a heartbreaking one.

Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.

On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.

In April 2012, I miscarried and the pelvic pain had returned to the point where I wanted the pain corrected before trying to conceive further. In October 2012, I had a miscarriage, resulting in the third chemical pregnancy loss. At this point I was still having pelvic pain.

In June of 2013, I had a robotic-assisted laparoscopy to peel off the peritoneum in the bilateral pelvic sidewalls and the posterior cul-de-sac to see if that would help my pain. The pathology report confirmed the diagnosis of endometriosis. At the post-op visit, the pelvic pain had fully resolved. I then did a round of fertility to try and conceive.

In May 2013, I then had my fourth chemical pregnancy loss. In July 2013, I then had my fifth chemical pregnancy loss. During the year 2013/2014, I went to a urologist because I was having problems with my bladder such as, I had to really push to go pee. My course of treatment was medication and trying to change my water intake. I had biopsies done and urodynamic testing done. The medication that was prescribed to me was 10mg Valium suppositories. The suppositories helped very much, but very messy.

On October 16, 2013, I went to the emergency room a few days before October 16, because I was in horrible pain, the most pain I was ever in. I was given pain medication and sent home because they could not find anything wrong with me. One to two days later I went back to the emergency room and begged them to do something because something was not right. I literally begged the doctor to help me. Despite not being able to find anything wrong me in during testing, they decided to admit me. On October 16, 2013 the doctor performed the Davinci Robotic Laparoscopy. They found that ovary was herniated and fell into an Allen Masters Window. During this surgery they also took out my appendix. All I can say is, thank god someone believed me, because if not, I would have lost my ovary. Plus, they never even saw on my ultrasounds that my ovary is herniated, but yet it was.

In March 2014, the urologist referred me to Bacharach Institute of Rehabilitation for an evaluation for endometriosis, pelvic pain, myalgia, and voiding dysfunction. It appears that every time I have surgery the cycle restarts itself for me having a hard time urinating.

On March 2014, I was seen at Bacharach Institute for Rehabilitation until July 14, 2014 for pelvic and abdominal pain, bladder problems. It was determined that the ability to urinate has improved as a result of therapy. The pain symptoms continue and mobilization of connective tissue in the abdominal/pelvic region does not help to decrease symptoms. On August 27, 2014, I called the physical therapy to determine the status of the physical therapy hold. I was on hold until after the scheduled exploratory laparoscopy surgery. Surgery was then scheduled for 9/10/14. After the surgery, it was determined that physical therapy would not be continued because it was simply not helping me. In October 2014, I had my sixth chemical pregnancy.

By the end of 2014, my pain started to come back already. By this time, I was emotionally and physically drained.

On March 31, 2015, I have a full hysterectomy scheduled. I know that have a hysterectomy is not a cure for Endometriosis, as a cure has not been found yet. But for me, a full hysterectomy is my cure to make sure that I will never have to suffer another miscarriage ever again, considering I already lost 6 babies, and I don’t want to ever go through that again. Plus, I am also hoping that some of my physical pain will be reduced with the hysterectomy.

Further, the week before my hysterectomy, my urologist is going to be teaching me to self-catheterize myself. This is just incase if I keep pushing and pushing and I just can’t release my urine, I have a way to relieve myself. Then, later this year I will most likely be doing a surgery where they implant a device around my hip/buttock area to send signals to my bladder to help reduce the amount of straining and easement of urinating.

I am only 26 years old and am way to young to be going through all of these problems. But unfortunately, people don’t understand this disease and think it is imaginary or that you just make it up. I enlisted in the military on December 6, 2008. I went on active duty on June 2010. I started to develop the pain on August 4, 2011. I have had the surgeries and whatnot, and because of the pain medication I was given, it was considered a restricted medication so I was unable to work. I was on medical leave during those time of surgery and for recovery. In August of 2014, I was pretty much told I was a liar by the commander of my base. And as such, he was not authorizing me to have my surgery. I have never lied about my endometriosis! At this point, I had no choice but to resign my active duty guard position with the military in order to have my surgery. I felt like I was under duress because I was in so much pain I had to do what I had to do in order to have that surgery.

Thank god I did that because they did find endometriosis during my surgery. I was no longer on active duty with the military but I was still a traditional guardsmen until December 2014. At that time, I chose not to re-enlist because they were trying to get me to sign a document that stated that my injury/illness did not occur while on active duty and I can seek a medical waive to stay in the guard. I was not signing any paperwork that stated that, my injury/illness incurred during my active duty time. Therefore, in September/October 2014 I decided to file a disability claim with Veterans Affairs (VA). I went through a local VA representative and they submitted all of my medical document and application forms that I gave them. On February 3, 2015, I went to the VA hospital in Philadelphia to get examined and questioned about my disease. The doctor stayed they could not do a physical examination to prove the endometriosis, because the only definitive way to prove endometriosis is through surgery. The doctor stated that my disease did incur in the line of my active duty time and there is no reason that my claim should be getting dismissed.

On March 6, 2015, I noticed money was deposited in my account from the VA, after speaking and chatting with them online, it was determined that I won my claim for VA disability and it is deemed to have happened in the line of duty. I have yet to receive the paperwork in the mail as to what my benefits are and whatnot for medical treatment. But it was made very clear to me by the VA, that I won my claim. I was advised that once I have my hysterectomy, once I get taught how to self-catheterize and once I get that bladder surgery, the rating will definitely increase even more than what it is already.

Words of Advice for Us:  Not a lot of people know about endometriosis, and for those who do, we should try and educate more people about it. For the ones that don’t know about it or have a misunderstanding, don’t let them bring you down to make you believe that its just bad cramps and ibuprofen will make it all better. It is never just bad cramps, it is much worse than that, as there is no cure. So for those women out there who let people talk down about our disease, stand your ground and educate them about it. All that extra stress in your life from negative people, you do need it and can make things worse. If you file an application for disability through the state or for the VA, never give up. It is you, the woman with the disease, who knows the truth and have lived with it for however long of a time.

My best advice, (1) educate yourself about your disease, the doctors, and so on; (2) Don’t let people minimize your disease, (3) any negativity that you get in your life, try and weed it out because that extra stress makes everything worse; (4) try and find a emotional support system, whether it be a significant other, friend, relative, or even an endo sister, someone is always out there if you need to talk.

If you wish to contact Lauren, you can mail her at laurensicily@yahoo.com.

Lauren has also created beautiful endometriosis awareness t-shirts, which you can see here!  To order one, drop her an email!!  The profits from the sales go toward the Endometriosis Research Center.

I want to send a special Thank You out to Lauren for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  You are truly an inspiration. And thank you for your incredible words of wisdom.  May we all take them to heart. Thank you!!! Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

4 thoughts on “Share Your Story : Lauren

  1. I too have endometriosis and I am fighting the VA to award me a service connected disability for this. Do you have any information or advice you would be willing to share with me? I was denied the ability to go to the doctor while on active duty status in a male dominated career field. I was told to suck it up. I filed a claim and it was denied. I am now trying to appeal that claim.

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