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 feet up as it will be longish even though I will be 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. Though I had lower back aches and right sided "sensation", I really didn't have cramps or pain. I was tired and drained during my cycles from all the bleeding, and the lower back aches that would land me in tub with water as hot as I could stand it. However, I was not in the misery that many endure.
A few years after being on the pill, I had break through bleeding for a month. My GP felt the problem was likely a build up of hormones so he suggested going off the pill for a few months. I agreed. I didn't have another cycle. Instead, I had become pregnant as soon as I stopped the pill, 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 23 and for the next two years I bled more often than not. I was on and off various pills trying to fix my cycle. It was during this time that I also found out that I had been having atypical paps. They were atypical enough to be noted in my chart, but not abnormal enough that anyone had even told me about them. It was my new GYN in my new state who stated I needed a colposcopy because once again my pap had not come back all clear. The colposcopy was fine.
A month after my 25th birthday, I underwent a hysteroscopy, laparoscopy, and D&C to figure out what was going on and why I was still bleeding so much. The problem turned out to be endometriosis. Because my uterus was covered with the implants, I had a complete hysterectomy soon after. I kept both of my ovaries since I was so young and estrogen is critical for overall health. Unfortunately, my surgeon was unable to remove all of the endometriosis, specifically what was on my bowel walls.
The hysterectomy was the beginning of a downhill journey for me. I had complications that left my body in a very compromised state and allowed multiple health issues to surface--hypoglycemia, fibromyalgia, migraines, myofasical pain syndrome, and IBS to name a few. I went from being energetic and generally healthy to someone who was sick and tired of being sick and tired.
Around five years after surgery, I was living in misery that was steadily increasing. Besides pelvic pain and concerns, my upper body was in pain 24/7. Two years later, 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. That summer, UTI like symptoms along with some bleeding had me bouncing from my GP to GYN to urologist. During a CT scan, 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 for a couple years by then, knowing it was just a matter of time before the pros of surgery outweighed the cons. My local GYN had told me outright years before that he would never do surgery on me again. To this day, we don't know what went wrong following my hysterectomy, and he wasn't taking any chances! 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 (IC). 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 as soon as I was ready. The complex cyst had surprisingly resolved on its own so there was no need to rush. 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 based on symptoms, exams, my endometriosis diagnosis, having had prior surgeries, and them being present at all prior surgeries. My specialist had the ability to excise endometriosis from my bowel walls and had extensive experience with adhesions. If and when I had surgery, he planned to use an adhesion barrier to try to prevent more adhesions. He also suggested 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. After talking to the NP, I left 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 an adhesion barrier 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. I was glad I had been warned or I would have felt the surgery was a failure during those first couple months.
Once I healed, I was on the road to a full recovery! Not only were my pelvic issues addressed, removing the endometriosis and adhesions that were affecting the bowel eliminated about 95% of my IBS issues. As a result, I was able to put back on some of the weight I had lost.
Additionally, God worked a miracle in my body. The cycle of pain I was living in was broken and I no longer live in daily pain day. I haven't taken daily pain meds of any kind since his touch.
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. I had found out after my first lap that they are both miracle babies, and their willingness to sacrifice and take care of me while I was so sick just proves how miraculous they are!
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 and daily pain.
S
Getting my life back! There can be life after endometriosis! :)
