Getting my life back! There can be life after endometriosis! :)

I recently realized that I had never taken the time to really post the success part of my story. Yes, I have shared on the boards and with members who have contacted me, but I had never really wrote out the story! So here it is! You might want to grab a glass of water and put your fee up as it will be longish even leaving out many details!

Because my periods had always been long and heavy, I had used birth control pills for most of my menstruating years. I had lower back aches and right sided "sensation" but didn't have cramps or pain to speak of. I was tired and drained during my cycles from all the bleeding but not in the misery that many endure except for the lower back aches that would land me in tub with water as hot as I could stand it.

The first time I experienced break through bleeding while on the pill, my GP felt the problem was likely a build up of hormones. He suggested going off the pill for a few months and I agreed. Immediately, I became pregnant, something we hadn't expected.

The next time I had issues was right after a very stressful time in my life that included a move to another state. I had just turned 23rd birthday and for the next two years I bled more than not. I and was on and off various pills trying to fix my cycle and found out later that I was also having atypical paps. Atypical enough it was noted in my chart but not enough that anyone told me until I had several and needed a colposcopy.

A month after my 25th birthday, I underwent a hysteroscopy, laparoscopy, and D&C to figure out what was going on. The problem was endometriosis.

Because my uterus was covered with the implants, I had a complete hysterectomy, preserving my ovaries because of my age. However, my surgeon was unable to remove all of the endometriosis, specifically what was on my bowel walls. That was in November of 2000.

Unfortunately, the hysterectomy was the beginning of a downhill journey for me. I had complications with the hysterectomy that left my body in a very compromised state and allowed multiple health issues to surface. I went from generally healthy to sickly and miserable.

By about 2005, I was living in misery that was steadily increasing. Besides pelvic pain and concerns, my upper body was in absolute misery. By 2007, I was doing little more than taking a handful of meds four times a day and living in my recliner with heating pads and ice packs.

The summer of 2007 brought a new issue--UTI like symptoms along with blood. At seven years post op, bleeding was quite a surprise! After being bounced from my GP to GYN to urologist, a CT scan was done where a complex ovarian cyst was found. My urologist decided it needed addressed before he explored further but he also felt I needed to consider that I had endometriosis inside my bladder. He sent me back to my GYN. My GYN stated he couldn't do anything for me and I asked if it was time to see a specialist.

I had been researching endometriosis specialists since 2005, knowing it was just a matter of time before the pros of surgery outweighed the cons, and knowing my local GYN wasn't going to perform surgery on me ever again because of all that went wrong with my hysterectomy. He is still my GYN today as the problem was no fault of his--my body simply didn't co-operate as it should have! Because I had decided on my first, second, and third choices for an endometriosis specialist, I was able to quickly set up an appointment to travel to one to see if he could help.

I cannot express how comfortable the specialist and his staff made me feel! They knew their stuff but also considered me as an individual! The doctor quickly stated that he did not feel I had endometriosis in my bladder but rather had Interstitial Cystitis. After discussing my situation, performing an exam, and doing a transvaginal ultrasound, he determined I could wait for surgery if I was not ready or he could help me surgically. The complex cyst had resolved on its own so I was in no rush and could take my time as needed. I felt no pressure to head into OR, did not feel my doctor was egotistical, and felt hope health wise for the first time in a long time.

We did know from my prior surgeries that I had endometriosis on my bowel walls, and we suspected there were adhesions for several reasons including symptoms, exam, endometriosis diagnosis, prior surgeries, and having had them present at all prior surgeries. Both issues could be addressed surgically by the specialist. He had the ability to excise endometriosis from my bowel walls and and had extensive experience with adhesions and would use an adhesion barrier to try to prevent more. He could also do a cystoscopy with hydro-distention in OR to diagnose the IC with minimal discomfort for me. He also assured me that he does not remove the ovaries simply because of an endometriosis diagnosis and did not feel that removing mine was wise, especially if he could excise all the endometriosis he could find.

I went home and talked it over with my DH, weighed my pros and cons, and spoke to my local doctors. I scheduled a second appointment with the specialist's NP to make sure all of my questions were answered--and I had quite an extensive list--and that surgery was the right choice for me. I left that day with a plan that included surgery after the new year.

I had the surgery in January of 2008, just over seven years post hysterectomy. The cystoscopy confirmed the IC diagnosis and I was prescribed Hydroxyzine. My endometriosis specialist was able to excise all of the endometriosis he found including what was on my bowel walls. He also removed the adhesions, including one connecting my bowels to my vaginal cuff, and used INTERCEED to try to prevent more adhesions. He was also able to preserve my ovaries as promised.

I did deal with a lot of post surgical pain but I had been warned that the more meticulous the surgery, the more pain one can experience during recovery.

Once I healed, I was on the road to a full recovery! Not only were my pelvic issues addressed, removing the endometriosis and adhesions affecting the bowel eliminated about 95% of my IBS issues so I was able to put back on some of the weight I had lost.

Additionally, God worked a miracle for the upper part of my body so I no longer live in pain day in and day and have not taken daily meds for almost 4 years.

It has been a long journey and not even one as extensive as what other women have had to endure. I did have a very supportive spouse throughout this journey and my two sons have been a blessing--they were not only miracles as I found out after my first lap that I should have been infertile, but they also were willing to sacrifice and take care of me while I was so sick.

I hope that my story can offer to hope to others! I spend my time here at HysterSisters simply to encourage others and share information that will empower more women to make better choices for themselves since I do know what it is like to live with endometriosis.

S