From the time I was 14, I had horrible cramping with my periods. I would get sick each month and end up spending a week out of every month in bed. This just became "routine" for me and continued on throughout my teen years.
From the time I was 14, I had horrible cramping with my periods. I would get sick each month and end up spending a week out of every month in bed. This just became "routine" for me and continued on throughout my teen years. Finally, in the winter of 1988, the symptoms became much worse and started occurring throughout the whole month, instead of just during my period. A visit to the GYN prompted concerns from him that I might have cystic ovaries, so he put me on the Pill to control the symptoms. It didn't help and the pain continued, only now in addition to my symptoms I also had to deal with effects from the Pill; weight gain, mood swings, headaches, etc. When 1989 rolled around, my GYN thought that it was time to take more aggressive action and I was scheduled for surgery. What should have been a minimally invasive laparoscopy turned into a conventional laparotomy with several complications, requiring me to be hospitalized for 10 days thereafter. I was in shock, having had no major prior surgeries to compare the experience with. I was completely out of sorts, in pain, confused and frightened. The only good thing that came out of my suffering was that I finally had a name for my suffering - Endometriosis, stage 4. The doctor said he'd never seen such a bad case in someone so young (I was 19 at the time). Many years later, I know that my story is like so many others out there, but for a long time I thought I was alone and didn't even tell anyone what was wrong with me.
Over the next several years, things would go steadily downhill for me. My health rapidly declined and took over my whole life. Work suffered, my family life suffered, my daily activities suffered. I would undergo surgery after surgery after surgery with no positive results. Everytime I would come out of surgery, the result was the same - the Endo was spreading and wreaking havoc on my bowels, bladder, kidneys, gallbladder and reproductive organs. I was told time and again that there was no cure, nothing they could do to help me long-term, but that the surgeries should help keep it at bay. They didn't. It got to the point where I was getting opened up every few months and each time it was as if the Endo had never been touched before. I was in agony.
Eventually I began to take control of the situation and rather than just go along for the ride, I researched every single piece of information about the disease that I could. Once I understood it as much as anyone really can, I felt a little more empowered. I began to discuss different treatment options and changed doctors several times in an attempt to find someone whom I felt actually understood the disease and didn't come from the school of thought that "pregnancy and hysterectomy will cure you," very common myths which still circulate today. Finally, I opted for Lupron after being told that it would put me into psuedomenopause and thereby afford me relief from the cramping, pain and IBS which had by now taken over my life.
I began my GnRH treatments and ended up worse off than I was to begin with. This was horrible! Was there no help for me?! I ended up doing 4 rounds with the GnRH in attempt to get relief. The only thing I got was horrid side effects which last to this day.
During all these treatments and surgeries, I became concerned about my fertility. Over the years I would suffer several miscarriages before I even knew I was pregnant and be told things like I should "just adopt" because there was no way I would be able to carry a baby and that the answer for me was "hysterectomy now." The first time I was told that was when I was 21 years old.
For 6 yrs. in between treatments I tried to no avail to conceive. Eventually I gave up and resigned myself to the fact that I would be childless.
In August of 1997 I decided to fly to a specialist in excision surgery in a last attempt to preserve my reproductive organs and hopefully to get relief from the Endo. It was a long, hard surgery that involved several hours work by a team of specialists, many miles from my home and family.
I flew home after surgery and wondered if I would ever feel better. Over the next couple weeks, I started to heal and feel a little better, but I was still getting horrible IBS attacks. Once again, I resigned myself to that fate. I felt I had lost the war with the disease. I had tried the meds, done the surgeries, and now even underwent this major excision surgery. Would there ever be an end in sight for me?!
About 4 weeks later I became violently ill. I lost 40 lbs in the space of a few weeks, couldn't hold any food down, was lethargic and generally very sick. I got quite concerned and called the surgeon that had just done the surgery. His office explained that I was still healing and couldn't expect to feel any great benefits right away and to give it time. I accepted that and went on with my life, as best I could. I hadn't gotten my true period yet, but figured that since I bled so heavily after the surgery for so long that I was off kilter. My surgeon had explained that sometimes major surgery will actually induce a period, so I assumed that was what had happened and figured I would make it back on track the following month.
A couple weeks later I was only getting sicker. Still, no period. I was about to lose my mind and became completely distraught. Then it dawned on me - my worst sickness was...in the morning.
I took a pregnancy test just for laughs, thinking that it would of course be negative, like always. I had only had relations once since the excision surgery and thought nothing of it. The test came back...POSITIVE!!! So were the next 4 tests that I made my husband run out and buy, just "to be sure." A blood test at my GYN here at home confirmed the results.
I didn't know whether to be sick or delighted. I was terrified of losing the baby. I called my surgeon that did the excision operation and told his office the great news. We were all rather amazed, I think.
Since I was already having complications and unable to keep anything down, etc., my doctor at home sent me for ultrasound right away to see how things were going. It was a nightmare. The baby's heartrate was very low and very feeble. I was terrified. I immediately began seeing a high-risk OBGYN at the reproductive pavilion of a major medical center, thinking that he would be better equipped to help me. It was the best decision I ever made, and my entire family will always be indebted to Dr. Durgam for the assistance he provided me with throughout the pregnancy.
I resigned from my job, deciding at that point that even though I had enjoyed a fruitful career in investment banking in spite of the ramifications Endo had on my life and the time I had missed from all the surgeries, it was time to re-prioritize my needs - the baby came first. My job was too stressful and too time consuming to allow me to focus myself on the needs of the pregnancy. I was not going to do anything to jeopardize this child.
Dr. D. put me on a special diet that would help the all-day "morning sickness" I was now experiencing and ordered immediate monitoring of the baby. He also put me on prescriptions for my anemia and the usual prenatal vitamins. The baby's heartrate increased each week when they did the monitoring, and he became much stronger. I was completely relieved.
By the 4th month, I was now having the reverse effects of what I had in the beginning of the pregnancy...I was packing on weight left and right, even though I wasn't eating more than usual and was in fact on a special diet. Weekly visits to his office confirmed that the baby wasn't progressing now the way he should be and my weight was being gained too rapidly. I was put on bedrest and told to avoid stress at all costs.
Then the heart problems developed. I started having paroxysmal tachycardia and was required to wear a heart monitor. This was followed by gestational diabetes. Also during this time, my ultrasounds revealed that I had several fibroid tumors. Obviously there was nothing Dr. D and his team could do about them other than "watch and wait." The baby was gaining weight, and his heart was strong, but not at the rate he should have been. More bedrest.
The entire pregnancy had been painful from the start, but now I was really starting to agonize. My adhesions were being torn from the growth of the baby, and I was sick, in pain, and distraught - not a good combination to help a baby be helpful.
The baby's due date was estimated to be the end of May/beginning of June. I kept telling myself, "hang on, hang on. Only a few more months to go."
The fetal monitoring continued, as did the checkups and monitoring of my health. The problems continued and my checkups increased to twice-weekly visits instead of the previous once-a-week schedule I was on. Things became very tense. I lived in fear every moment that I was going to lose the baby.
In the 6th month, everything came to a head. I had gone into pre-eclamptic stage and developed full-blown toxemia, on top of all the other complications. I was horrified. Dr. D tried to reassure me and help me to hang on until the baby's lungs were developed before taking any aggressive action.
By the end of the 7th month, things had gotten so bad that he was afraid I would lose the baby and possibly even my own life. One morning I went for my checkup and the baby's heartrate had dropped. Off to induction I went.
I was induced by Cervidil and Pitocin, which I had been told would be "somewhat painful." Obviously whoever decided they are "somewhat painful" drugs has never been in labor.
18 hrs of long, hard labor coupled with a frantic medical team assisting brought my beautiful, miracle child into the world. Dylan Anthony was born at 7:36 a.m. on May 5th, 1998. He was the biggest preemie I've ever heard about, weighing in at 6 lbs, 3 oz. He was taken to neonatal intensive care after I got to see him. He was the most incredible thing I have ever laid eyes on, and every single moment of suffering and agony I have ever experienced to get him here is worth it.
The story doesn't end there. I had to go for emergency surgery to repair the damage done to my bladder during the delivery. Life was not easy with a double episiotomy and stitches in my bladder! It hurt to even hold the baby. I also went into a rapid downward spiral of postpartum depression. I sobbed endlessly for no reason. Since Dylan was early, I really wasn't ready to produce breast milk yet, and had a very hard time breastfeeding him. That fact only served to depress me even more and everytime the nurses brought me a bottle to give him, I cried harder about my shortcomings as a mother.
Eventually the following week we were released from the hospital, and my spirits started to rise. Until, that is, I was told that my son was jaundiced and required treatment by his own pediatrician immediately upon release. Watching your newborn get stuck again and again with needles for days on end to test his blood is not something I would wish on any mother.
Eventually Dylan recovered and went on to be as healthy and happy as any full-term baby. Actually, he's surpassed most babies his age and is in the 95th percentile for height and weight! I couldn't be more ecstatic. I keep thinking he must truly be the golden child, to have made it through everything as well as he did.
My health continued to decline afterwards (as if it could get much worse). Eventually, given the fact that being a mother to my son is much more important than worrying about my own health, I consented to a hysterectomy. That was 1 month ago, on my son's 6 month birthday.
The hysterectomy confirmed several things: massive fibroids, internal hemmoraging, adenomyosis, Endometriosis (very little, given the fact that I did have excision surgery), and lots of cysts. I had everything removed - uterus, both ovaries, both tubes and partial cervix.
It's too soon to say how I feel now, but the important thing is that I beat the odds. I DID have a child, and he's better than I could have ever hoped. I may have lost the battles with Endo, but I won the war.
I would like to encourage every Endosister out there who is fighting against the disease and time in hopes of conceiving that there is hope. Don't take one or even two or three doctor's opinions and treatment options - keep going till you get to the one who can help you. It was a long, hard road, but it was one that did have a light at the end.
Dylan Anthony Guidone