Lupus and Fertility

Update:

The transition to Benlysta is going well though moved much slower than anticipated. Prednisone use is still required a couple days a week to combat the stiff, swollen, and painful joints. The goal is to live without Prednisone but until Benlysta is working to its full potential, it will have to do. The side effects have lessened to minimal itching from sporadic hives, and the headaches are mild now (wish they were gone). It has been a long winter/spring, but I can feel that the drug is starting to do its job. After the third month, we wondered if it was worth it but I had faith that if I held on a little longer that things would get better. Some of you may be thinking that it could just be the weather change which is true too. Eventually, I will get back to living without daily Prednisone and Benlysta will be primary medication. However, there is an issue that occurs with chronic Prednisone use. The adrenal glands stop producing a bodies natural version of Prednisone. Therefore, I will be seeing an endocrinologist to check that out for me. Stay tuned.

Lupus and Fertility

Prelude: I have rewritten this story a few times because it was pointed out that it was too sad, too detailed, or too negative. The second version was without the details, but it still had a negative tone. Unfortunately, there is no positive way to tell this part of my journey so, I apologize if it is difficult to read (though it should be fine, I toned it down a lot). Please know that this is just me telling you what happened and like my other blogs, it is not meant to gain sympathy. We never had that “why me” moment because we were busy with life and had faith that our family would grow one way or another and it did.

When telling my Lupus story, there have been questions regarding why I wasn’t diagnosed or treated for Lupus until I was an adult when symptoms were there as a child. The truth is that some of the symptoms were mistaken for symptoms with menstrual cycles and anemia which became a huge part of my disability. Hopefully, telling this part of my story will answer some of those questions. Also, this may be sad and at times difficult to read but the road led us to adopt our daughter Kara. She is the light of our life, and I am grateful for my family. The path, like all others, was not the road we intended to take but the one we chose led us exactly where we were meant to be.

My memory has no recollection of having a normal menstrual cycle. In my first years, the cycles (this is what we will call them for the toned-down version of the story) were irregular with moderate pain which progressed with intensity as I got older. In junior high and high school, I often missed school due to the pain and sometimes due to the mess of my cycles. I tried planning but it was hard to plan for a monthly cycle when there was no knowledge of when the cycles were to return. The word cursed fit our family when it came to bad cycles and endometriosis, me, my mother, my aunt and my cousin all suffered (so have many other families).  

My mother took me to a gynecologist early on who prescribed birth control to help regulate the timing and severity of my cycles. It helped with premenstrual symptoms (PMS) and regularity but not the pain nor the flow. I was diagnosed with severe anemia and was prescribed iron supplements. My complaints of fatigue and headaches were dismissed as PMS and a side effect of having anemia. I was prescribed NSAID’s and told to eat more red meat or beans to help increase blood production. It was also suggested that I not overexert myself which may have been true seeing as I was never sitting for very long. However, some suggestions caused more harm than good. Heating pads relieved cramps and aspirin helped with pain but both increased blood flow. Based on what the doctors had stated, neither me nor my parents had no reason to suspect that there was any other cause for the symptoms other than the anemia. The pain never ceased and I had cramping in-between periods so the decision was made to have an exploratory surgery. The doctor found endometriosis and used a laser to remove the tissue.

Endometriosis is excessive uterine tissue that grows outside of the uterus or endometrium. The tissue thickens and often grows on ovaries, tubes, and other areas surrounding the uterus. Endometrial tissue/blood sheds each month but endometriosis has nowhere to shed to since it is in the pelvic cavity not the uterus. This causes inflammation and a great deal of pain.

Shortly after my first laparoscopy, my Lupus symptoms increased in severity and were showing more than what was first thought of as anemia. Over the next few years, doctors diagnosed the Lupus and tried to stabilize it with certain medications that made endometriosis worse and the same happened with medications given for endometriosis that caused Lupus to worsen. It became an emotional battle for me, and I often felt quite defeated but, there was never a time when I thought the fight was not worth continuing.

Displeased with my endometriosis trials, I sought out different doctors who had their own remedies which never worked and always led to laser surgery. One doctor told me that I should have a child then have the uterus removed. Truth be told, I was ready for that to happen, but endometriosis and Lupus prevented a successful pregnancy. I had six laparoscopic surgeries, and each one was more extensive than the last. The doctor who performed the last surgery stated that the scar tissue and adhesions from the surgeries did as much damage as the endometrial growth. The adhesions were stuck to my colon. The doctor did not remove it for fear of perforation and possible colostomy. He warned me that I would need reconstructive surgery in the future and volunteered to do so. However, the Army sent us to our next duty station and the doctor was transferred to Bethesda.

The rheumatologist said I would have to be off my Lupus medications for at least 6 months before getting pregnant. We sought the assistance of a fetal maternal doctor. The first doctor performed a series of tests and imaging then gave us a lecture of what a pregnancy could cost me. The report showed that I could develop heart and kidney failure which could be permanent. There was a certain percentage that was guaranteed to be permanent, but the majority should return to normal (if it happened). The report was quite lengthy and scary. My hubby did not want to try after reading it. He saw how hard it was for me off my medications and he did not want me to have any percentage of failure of anything. However, that did not dissuade me from continuing my quest for a child.

There had many miscarriages at this point though some I had mistaken for a burst cyst. My first ovarian cyst ruptured when I was 19. The pain woke me from my sleep and was so bad that I vomited. An overnight stay and some heavy pain meds helped but it was still another day before the pain decreased. I returned to the hospital with similar pain at a later date, assuming the same thing had occurred, but I was wrong, it was a miscarriage. It was a surprise given that I had no idea I was pregnant and had not missed a cycle. I was not sad because I was taking Lupus medications. These medications could cause blindness in children and numerous other abnormalities.  This happened again a few times over the next few years, even on birth control. One doctor told me the miscarriages were just “Mother Nature’s way of discarding non-viable pregnancies.” It sounds harsh but it is actually true. Many women shed nonviable embryos (cycles shed eggs). The doctor also stated that many women who are having a rough cycle may be going through a “natural miscarriage.” The burst cysts, endometriosis, and adhesions eventually caused a clog in both fallopian tubes. To fix this, the doctor performed an HSG to clean them out and prevent ectopic pregnancies. This was performed before I started the Clomid Challenge. The challenge started with testing the cycle and measuring hormones to see if I was fertile followed by an injection at a specific time which should have increased the chances of pregnancy. Shortly after starting that challenge, my husband was deployed to Korea for a year. The timing was terrible, but it was only a year-long set back.

We moved to a new base when he returned from Korea. My tubes were still clean but Lupus was active so we were not trying during those two years. However, I got pregnant anyway though I had not ideas since I had not missed a cycle. My husband was away for a two-month school when I awoke one morning in severe pain with terrible bleeding. I could hardly stand or even move without pain. The pain seemed to engulf my entire abdomen and upper thighs. The hospital was close, so I drove myself to the emergency room. After an exam and ultrasound, I was told that the pain was from was a miscarriage. The doctor explained that I was in the second trimester and would need to see an OBGYN for surgery. He wrote me a prescription for pain medication then “walked” me to an office area to get a referral to see a local OBGYN. There were none available at this rural on-base hospital. The hospital treated minor acute things then transferred to larger hospitals for bigger issues. Palliative care was not their strong suit. I sat there, bleeding and in a great deal of pain while I waited for the advocate to get the referral. Hunched over, I hobbled my way over to the pharmacy and waited for the prescription. It felt like an absolute eternity before my number was called. In the military, I was known by the last four of my husband’s social security number. Military spouses today get an identity rather than four digits. We owe our lives to the Army so this is not a complaint, just shared matter-of-fact information. This miscarriage was dissappointing because i was in the second trimester. I would have stopped my Lupus meds had I known. I cried a lot and talked to my mom many times over those two days. Thank God for phones, it helped my sanity.

Anyway, it took three months to get an appointment with the OBGYN who was supposed to have done a D&C (dilation and curettage) to remove the non-viable tissue (toned-down verbiage). However, she stated that my body has discarded the excess tissues and blood from the engorged womb (as women do). My uterus was back to its normal shape and the cervix was open (had been closed for pregnancy) so there was nothing to be done.

After that ER visit, I never returned to another ER regarding issues related to my cycle, not for the pain, not for hemorrhage, not for any other associated problems, no matter how bad it got. I simply did not want to know what it was. After 12 years of suffering, I learned the treatment was the same for miscarriage, burst cysts, or even unburst cysts; go home and take pain meds for a few days then pretend you are okay and go about your normal routine as if nothing ever happened.

At 23, I was told that I needed to have a hysterectomy but I was not ready to give up the fight at that time. One doctor had me convinced to have the surgery and I even went to the pre-op exam. However, I completely chickened out because I was not ready to give up even though he warned the damage I was causing by continuing to fight would not prevent the inevitable hysterectomy. He was right! At 30, I was told I had a mass in my uterus (thought to be endometriosis related) and needed a hysterectomy.  We were living in Florida at the time, and I had attended the appointment by myself. At that point in my life, I didn’t think there could be any more surprises but, to hear the word mass, immediately made me think it would be cancer (of course we all go there first). I may have cried a time or two after miscarriages, were sad or disappointed but never depressed about it but, leaving the hospital after that visit, I felt that this was going to be the time I completely break down. However, God, Mother Nature or whatever you choose to call it showed me otherwise. My car was facing Tampa Bay where I could see a school of dolphins jumping in and out of the sunset-colored water.  It was a beautiful post-card worthy scene and I truly felt it was going to be okay. The decision to have the hysterectomy was taken off my shoulders which was a relief. I couldn’t make the call but it was now a necessary thing I had to do for my health so it was done.

Honestly, I was afraid of what my husband would think of me. I was worried he was not ready to give up the fight, but I was wrong. He was relieved that my suffering would come to an end. Endometriosis dictated much of my life, even more so than Lupus. I could work through Lupus pain, but I could not function on the first day or two of my cycles. My mom and I used to laugh at how we planned activities around my cycle when she would visit. We tried to make her visits in between cycles but they often had a mind of their own. One time we had a trip to the beach planed with the kids but switched it for an aquarium adventure day due to the cycle. She chauffeured that day so I could take pain medicine. I refused to miss out on the fun when they were visiting for a short time. This was the norm for me and was often embarrassing. My mother was a good sport and she understood because she had suffered with endometriosis as well. It was hard to explain to others who visited.

We always wanted children but we had so many children in our lives that I was okay with not having one of my own (sometimes). We always spoiled any child in our presence and continue to do so to this day. We were always happy when children were born and never did the “why me” stinking thinking. We just had faith it would work out somehow. We had discussed having lots of kids when we first met and even discussed adopting children before we were married. My aunt and uncle-in-law had adopted two children from Korea, and we considered a child from Korea when he was stationed there.

The hysterectomy was supposed to be vaginal, but the mass was too large. Therefore, they abdomen had to be opened and it was taken out in three pieces. The doctor also tried to fix some of the internal issues but the surgery took too long so they did not accomplish all that had been planned. It was suggested again that I may need reconstructive surgery in the future. My mother immediately flew in to help because it was supposed to be a few days of recovery, but was changed to a few weeks. Also, my husband was caring for our dog who had surgery the day after me, so we needed help. My brother Jimmy came for moral support and both spent Christmas with us. Thankfully, the mass was just endometrial tissue rather than cancer. I am still grateful for my medical care team, the good news, and the help we received.

During my first post-op checkup, the doctor informed me that part of my cycle and endometrial problem had been due to low progesterone. She explained the details of how it could have helped though was irrelevant at that point. The clinic was next to a pediatric clinic inside the hospital so, I was exposed to children with chicken pox and got Shingles. Ah, immune problems joined the party. The pain was just as bad as the hysterectomy. The lesions covered my left eye and forehead and the swelling cause both eyes to close. I was without sight in the right eye for three days and it was eleven days before the left eye opened all the way. My mom couldn’t take any more time off work, so she flew my sister out to help. I could see out of the right eye when she arrived. Before then, I walked very slowly through the house and patiently waited for my husband to come home. He too, did not have any more time off.

Endometriosis not only dictated my life but, it also affected Lupus. As I stated previously, there was a constant battle between the two diseases. Once the cycles stopped, Lupus finally stabled out (somewhat). My cycles were so bad that it often flared the Lupus therefore, getting rid of the cycles decreased the frequency of Lupus flares. One of my rheumatologists stated that endometriosis could not affect Lupus but, my medical records will show that everytime I was hsopitalized for Lupus, I was also on my cycle. Maybe someday doctors can figure that out because I disagree. Anyway, the thing I feared most, a hysterectomy gave me my life back. Who knew?

There were many modeling opportunities in Tampa which I had scheduled around my cycles. After the cycles stopped, I began doing more work for two agencies and volunteering for the Army with the remainder of my time. It occurred to me that if I was now well enough to do these things that I may be able to have a real career. So, back to school I went.

I thought my female woes were over but about a year and a half after the hysterectomy, I developed hydronephrosis (kidney was full). A blockage prevented urine from being excreted from the kidney. The blockage was a mass that sat upon the ureter which is like stepping on a hose to prevent water flow. The doctor placed a stent in the ureter which allowed the fluid to flow into the bladder and out of the body appropriately. However, the weight of the mass caused the stent to collapse so another procedure was performed to remove the old stent and place a new stent. This process happened seven times in a short amount of time. The anesthetic caused an ileus (might not be spelled correctly) which is when the bowels fall asleep under anesthetic but do not wake up after the anesthetic wore off. I was lucky that a double shot of expresso cured the problem. Had that not worked, I would have had another problem on my hands. Anyway, the decision was made to remove the mass since it was too heavy for the stents. The problem was that the OBGYN did not want to remove because it was situated on the ureter. The urologist did not want to remove it because it was an endometriosis-related mass. After a month of arguing, the urologist reluctantly performed the surgery.  

In the meantime, I was also suffering from chronic vaginal bleeding. At first, the OBGYN thought it was related to intercourse but after a short test period, it was determined not to be the issue. After an exploratory surgery, the doctor had found that my vaginal cuff (the part where the uterus had been connected) had not healed so she cauterized it (burnt the ends). However, the bleeding continued for another year. So, back to the operating room I go. The cauterized area had not healed either so the decision was made to cut the top of the cuff down to clean and healthy tissue to allow for proper healing. Thankfully, this worked, and I would like to say is the end of my journey with female related issues but I still have pain. The adhesions often cause pain by pulling on structures they are attached to each other like my bowls. Reconstruction is in my future but hopefully, I can put it off until it is absolutely necessary. There is a risk of bowel blockage by waiting, but we will cross that bridge should that path connect.

The thing I am most grateful for is that my female-related issues and surgeries happened prior to the adoption of our daughter. She is where our path was meant to land, and we have no regrets with the paths we have taken. Though my early Lupus symptoms may have been masked by anemia, I do not feel that I had inadequate care. I truly feel that my symptoms made sense with the diagnosis given for anemia. Even if the doctor thought something else was to blame, I highly doubt Lupus would have been the result. I am sure he would have gotten there had we continued to go back but we thought we had an answer. There is no reason to live with what-ifs or blaming of others…or stinking thinking. I am grateful for all that I have (pain and all). It made me who I am today. Also, I learned so much about the human body through all my trials and tribulations. It is why I chose medical coding as a profession. I would love to have given back by being a nurse but being immune-suppressed, sick people are not the right path so I joined the revenue cycle part of healthcare instead which I absolutely love. I truly believe that everything does happen for a reason, we just don’t know what it is until later (sometimes way later).