Part Three
If you haven't read Part One, click HERE
If you haven't read Part Two, click HERE
I'm no longer embarrassed by my experiences
because I endured, I learned...
As the months went by I was in pain more often than not. If I brought it up to Dr. X during my many, many early morning visits, he would brush me off with a "That's normal." and dismiss me. Wes and I learned I shouldn't be the one to ask questions. If we wanted or needed to know something, Wes had to ask him because he never took my concerns seriously. The man was a misogynistic ass and treated me like I couldn't possibly be taken too seriously. We both tried telling him about the excess pain, and he insisted it was perfectly normal. Since we'd had no positive results with the IUIs yet he wanted me to have a laparoscopic procedure done to examine my abdominal cavity and run dye through my fallopian tubes to check for blockages. He would not be doing the procedure himself because he was going on vacation, and it would be performed by another doctor at the nearby hospital. I really wasn't upset about that. There was a measure of relief when I found out a local female doctor would be doing the procedure. During my pre-op, the doctor informed me I had a couple of cysts on my left ovary that were cause for concern and needed to be removed. Wes and I were both surprised because I had ultrasounds constantly, and Dr. X had never mentioned seeing cysts on my ovaries. She told us she would drain them while she was inside. Ovarian cysts are common enough—no big deal, right? *snort*
I arrived at the hospital early, still sick but determined to see it through. When they wheeled me away from Wes, I was so lost and scared. I couldn't ask questions because neither of the nurses spoke English. While we waited OUTSIDE the operating room, they reached under my blanket and took my gown from me. WHAT? No seriously, I was already upset, and that pushed me dangerously close to the edge of freaking out. But I clutched the blanket to me, shaking from head to toes, and held onto my tears until they moved me to the operating table. Before ever putting me to sleep, they were manhandling me, putting me in stirrups, milling around me talking fifty miles a minute in another language, and generally treating me like I wasn't a real person on the table. However, God sent me an angel in the form of the anesthesiologist. It was all too much, so while they prepped me, tears had begun to slide down my cheeks. I never made a noise, but I was sick, terrified, and humiliated. He sat down next to me and started talking to me—in English! He reassured me and spoke softly until putting me to sleep. To this day I am so thankful for that man. I don't know his name, and I never saw him again, but I know God put him there just for me in that moment.
I've woken up in recovery six MORE times since that surgery. It's never fun, but I never experienced what I did that day. At the same time my eyes came open, and I came to awareness, I felt like an elephant was standing on my chest. I couldn't take a breath in, and it was terrifying. There were people standing over me, and the reason for the pressure was because they'd woken me up while they were still removing the tube from my intubation. After they removed the tube, and I was finally able to breathe again, I looked around and saw I was in a room with at least a dozen beds—no curtains, no privacy. Other patients were waking up, and various nurses were moving around. I couldn't wait to get back to the room where I knew Wes and Caleb were waiting, so I struggled to wake up and remain alert so they would release me from Recovery.
Those having outpatient surgeries had to share a room, and the woman sharing my room had a minor procedure done shortly before me. Despite my discomfort at sharing a room, it turned out to be a fortunate thing because she spoke English while my nurses did not. The nurses were not gentle and tended to lean towards manhandling. Still sick and dehydrated, three incisions, and also full of dye, they were insistent I had to get up and pee before they'd allow me to go home. I totally understand that, but I didn't NEED to go yet since my body was absorbing every bit of fluid they gave me. They had a hard time getting my blood pressure back up after the surgery, and no matter how many bags of IV fluids they gave me, it stayed low. The sweet lady in the bed next to me translated later asking me why I wouldn't just get up and go to the bathroom so that they would send me home. When I explained I was in pain and didn't need to go, she was surprised because she didn't realize I had incisions and assumed I'd had a simpler procedure done like hers. She translated for me a few times before she left, and I was sorry to see her go.
We asked repeatedly about the results of the surgery, but my roommate was able to find out that the doctor was "too busy" to come see me, and that we would have to go down and see her in her office when we were ready to leave...
They wanted to keep me overnight due to low blood pressure, but I refused—especially after my post op care. I wasn't letting Wes and Caleb leave that hospital without me, so we finally made our way downstairs to the doctor's office. I had to walk.
When we were finally able to see the doctor, she had shocking news which haunted me for the next ten years. She went on to explain I nearly lost my left ovary. She had removed cysts that caused my ovary to twist over two complete times and the blood flow to restrict. She looked at me and said, "You had to be in a great deal of pain, why didn't you tell anyone?" Just in case you missed it further up, I had repeatedly told him I was in a lot of pain only to be brushed off and told it was normal. She went on to explain it was called Ovarian Torsion, and while it wasn't common, once you've had it you are more likely to have it again. (<--- remember that, it matters) The cysts and having "longer than average ligaments" holding the ovaries in place made me a prime candidate. I had no blockages in my fallopian tubes to prevent pregnancy (That's what the dye was for), and I should just return to my regular visits in a couple of weeks. I tried to express my frustration and explain how often I'd mentioned the pain, but the "good ol' boy" system isn't just an American thing. She told me to follow up with Dr. X and sent me on my way. Wes knew I was still in a lot of pain and asked for pain medication. She opened her drawer and pulled out their equivalent of Tylenol and handed him three pills. No aftercare instructions, no pain meds, and no explanations. I walked out of the hospital on my own—a few hours after surgery. No wheelchair, no assistance, no pain medication...nothing.
Two weeks later, as instructed, I returned to Dr. X. All three of my incisions were infected despite my careful attention. He didn't seem concerned and told me he couldn't wait to try some new scar cream because these were sure to leave scars since the healing hadn't gone well. Ass. We told him the results of the surgery, and he couldn't have cared less. He wanted to proceed with treatments as usual...so we did, and things grew progressively worse.
At that point I'd had an anaphylactic reaction to medications, nearly been given the medication again, and almost lost my left ovary. The doctor was a narcissistic misogynist but still insistent we could get pregnant. So we moved on thinking the worst surely had to be behind us.
It took years for me to stop feeling stupid for letting him take advantage of us, but I have now. We believed everything we endured would lead to a baby. If he'd asked me to stand on my head and whistle, I would've done it. Many of these are painful memories—literally and figuratively—and I didn't want to be judged for allowing things to go on as long as I did, so I've mostly kept quiet except for a select few people.
Until now.
The cycle of constant blood work, repeated vaginal ultrasounds, and rushed nighttime office visits continued. Doctor X thought doing two IUIs every cycle would make us far more likely to conceive, so every month I had the procedure around the time of ovulation. The routine was the same each month:
Take Clomid and grow the follicles.
On day 10 begin daily blood work and vaginal ultrasound.
NOT ovulate and receive an injection to force ovulation.
Ovulate huge follicles (cysts as we later learned) and wait around for a phone call.
Rush over to the office late in the evening.
Have the procedure where something nearly always went wrong.
Have the procedure again the next night.
Go home both nights, cramping and bleeding.
Wait to see if we were able to get pregnant.
Not get pregnant.
Lather, rinse, repeat.
Over the next six months, procedures grew increasingly difficult. After the first IUI, Dr. X was no longer able to feed the catheter through my cervical opening the regular way. It took him and someone else to do the procedure because he would have to use a different instrument that took two hands to hold "things" open down there. The problem with this is that he didn't always have help that late in the evening. If a nurse or his wife (NOT a nurse) weren't there, that only left Wes. What was he supposed to do when he's standing there, halfway into the procedure, and he can't feed the catheter into my uterus to finish? I'll just tell the husband to come over and hold these is apparently a logical response. Wes, looking very much like a deer in headlights, but he did as he was told while I cried. Dr. X attempted to force the catheter through the opening repeatedly until I couldn't hold back and cried out. Caleb, only a toddler, was playing in the other room and called out to check on me. With tears rolling down my face, I pretended I was laughing and told him to stay in there and play with his toys. Dr. X tried an injection straight into my cervix to numb it, but it didn't work. I just had to power through until he was supposedly successful.
To this day, I honestly don't know if he was really getting it all the way up into my uterus. The forward tilt of my uterus, the narrow cervical opening, and the lack of appropriate assistance often made me wonder—he could've easily pretended. But I'll never know, nor do I really need to at this point. The last few times we had the procedure I would sit in the chair and shake with fear. The pain, the humiliation, and the emotional roller coaster were getting to be too much. I was quickly reaching the end of my tolerance, and my hope was running out.
Originally I intended to make this story four parts, but I decided to post the last two at once. I'm ready to finish—because it just feels right.
I'm no longer embarrassed by my experiences
because I endured, I learned, and I survived.
Sometimes angels come in the form of every day people. The repeated doctor visits, along with being sequestered with only American patients, meant getting to know the other couples who shared your ovulation cycle. One of those very women convinced me to join an infertility support group for American women she was part of. It absolutely went against my very nature to attend something like that, but for some crazy reason, I just couldn't tell her no. She was (and is) very sweet person who welcomed me and made me feel like part of the group. To this day, most of us are still in contact. A couple of us have adopted, a few of the others successfully conceived later. The one who invited me to the group ended with four children—through no help of Dr. X. I LOVE seeing the pictures of her children and reading the antics of her daily life.
A few of the women had different doctors they traveled further to see. One of those women, a woman we'll refer to as C, was extremely self-educated about infertility. I absolutely love and adore this woman to this very day. It felt as if she were glue that held the group together, and I respected her thoughts. We had a PRIVATE online forum where we could chat and stay in touch in between the times we were able to get together in person. We shared experiences and advice and things we learned. It was a safe place to share without fear of the same platitudes by well-meaning people who just didn't get it.
One of the rare times we were able to get together in person for dinner, a couple of us that were patients of Dr. X mentioned our excitement at the size of follicles we were producing. C quickly schooled us on how bad those measurements were. One of the things I remember most about that dinner/meeting was the shock I felt. The rest of the conversation was a blur, really. The more details the Dr. X patients shared, the more the other women seeing different doctors told us it was all wrong. SO. MUCH. WRONG. Six months of physical and emotion pain, drugs that could've killed me, almost losing an ovary...all with the HOPE of pregnancy...for nothing. I never had a chance—not really. I went home and started my own research, and what I learned backed up everything C and the others told us. C, if you're reading this, I've already thanked you, but...thank you again.
IUI, or Intra Uterine Insemination, is when a tube is inserted into the cervical opening, fed up into the uterus and to the opening of the fallopian tubes where the washed sperm is deposited. All of this creates optimal chances of conception when all procedures are followed correctly. Sperm are, ideally, put through the washing cycle for anywhere from thirty minutes to two hours. Our sperm were washed for five-ten minutes. Sperm inserted without proper washing can cause cramping, inhibiting their ability to get where they need to go. During insertion, the sperm should be implanted slowly and deliberately. Dr. X would just shoot them in as quickly as possible and rush the procedure.
I was very fortunate to have an opportunity to speak with an American fertility specialist via telephone appointment. He didn't charge us, and he was forthright and honest while not reacting negatively. According to him, IV lines are not standard practice for IUIs. There should be no reason to need one. This same specialist told me the idea follicle size for conception is between 18-30 mm—ideally at the lower end of that spectrum. Mine were being grown to over 40 mm, and follicles of that size are nothing but cysts with no chance of conception. Did Dr. X know that? To this day we still have no idea if he was truly ignorant or just a devious bastard trying to drag out treatments for more insurance money.
Daily blood work and vaginal ultrasounds are NOT standard practice for IUIs. It is necessary to monitor these things, but not to the extreme Dr. X did. I spent the entire six+ months with black and blue arms. I'm pale, I bruise easily, and the nurses weren't always very skilled at blood draws. And, let's face it, constant vaginal ultrasounds are invasive on top of unnecessary.
We did know about the window of opportunity for conception after ovulation, but just in case you didn't realize, you have twelve to twenty-four hours to introduce sperm—that's it. During our six months he would often put us off until after that window assuring us the data wasn't true.
The more I learned, the more appalled I was. I was angry with him, but worse than that, I felt betrayed—from MYSELF. Why didn't I listen to those instincts? I pushed away that voice that whispered to me from the first meeting that he wasn't to be trusted. I was embarrassed, but I was royally pissed. In the online forum, we shared our experiences, our frustration, and our anger. An investigation begun with TriCare, and some of us had to go before a board to share our experiences. That was such a hard day. Sitting at the table with several people, answering questions, feeling as if I was on trial...it was all so wrong.
The worst betrayal came from a fellow American woman. Out of all of us, she was the only one to get pregnant while under Dr. X's care. They were trying on their own even while undergoing his treatments, and they were fortunate. She was ecstatic because being seen in Doctor X's office meant he would do an ultrasound every single time she came in—that's an amazing opportunity. Unfortunately for the rest of us, that opportunity was worth throwing us under the bus. She told the doctor about our forum and how angry we were. His wife pretended to be a local person needing support and joined so she could see everything...take pictures...and use everything against us. One of the women was particular angry and made a comment about wanting to kick him in the balls. Let's face it, after the Hell he'd put us through, a comment like that is not shocking. They claimed it was a threat and paired it with his potential loss of business from the upcoming investigation, and decided to take several of us to court basically for a civil suit for defamation of character. Again I say, what in the actual Hell? I came home one day to find legal papers, in another language, saying several of us were to be summoned to court—their court system—to testify on our own behalves. All of this because one American woman was afraid TriCare wouldn't continue letting her go to this doctor and having her many ultrasounds.
Wes and I took the papers to a lawyer on base. In so many words, he told us we didn't have much of a chance in court because the law in that country would, more than likely, side with HIM. The TriCare investigation resulted from our forum of women sharing information, and he was out to punish us. At one point, early in the treatments, Dr. X jokingly told us he couldn't "piss off the Americans" because he made far more money from us as private patients than he did his local patients...that's social medicine for you. He had his own plane and fuel was expensive.
We were three months from returning to the states where Wes had applied for, and been awarded, a teaching position at a training base. If we tried to fight Dr.X, and on his turf, it could take a very long time. We talked to one of Wes's superiors, explained the situation, and his advice was for Caleb and I to leave the country to avoid being forced to pay any fines or deal with their court system. Immediately. Within twelve hours we were packed and at the airport. Another of the girls left the country as well. One was so indignant at his audacity, she stood her ground and went to court. They made her pay him a fine, forced her to apologize, and made her sign something saying she wouldn't speak ill of him ever again. It went exactly as the lawyer predicted. SHE was treated like she'd wronged HIM. I can't begin to tell you how backwards that was.
Dr. X was not banned from treating Americans at THAT time. However, I later learned more accusations came to light, and he was eventually removed from the TriCare list. I don't know if it was temporary or permanent, but I did feel a small amount of satisfaction knowing his life was interrupted. After all, he did say he shouldn't piss off the Americans. Too bad he didn't heed his own advice. In the end, he'll have to answer one day for the things he did. He could very well be treating patients again, but there's absolutely nothing I can do about that.
In the course of the stunning facts we'd learned, Wes and I decided to stop infertility treatments altogether. My body was tired, my emotions were spent, and I had no trust left in me for another doctor. Wes was tired too. He dealt with a lot of guilt for the couple of times he was forced to assist. I can only imagine what it must've been like to be forced to hold instruments while your wife cried in pain. He was more than willing to continue if I wanted to, but we agreed it was time to stop. On Christmas night, hours before Caleb turned five, we stood in front of the Christmas tree and agreed it was time. We felt God didn't mean for us to have another child. We've laughed many times since then because we thought God had told us NO to having another child. In reality, He just had an entirely different plan. He knew a tiny little girl was going to need us very soon, and he brought Katlyn into our lives when we returned to the states. That story is part of another blog post, which you're welcome to read HERE.
I continued struggling with female issues for a few years and finally decided to have a hysterectomy in January of 2009. I was only 32. She left my ovaries so I would not have to take artificial hormones. Not having the correct hormones at a young age can lead to heart disease and bone density loss. In August of 2009 I developed severe pain on my right side. I went to the doctor only to be told it was a kidney stone I'd have to power through. The next day I returned as the pain intensified, and again I was told it was a kidney stone. On my third visit, they decided to take me seriously because I was pacing and wailing in ER. They took me back for a vaginal ultrasound to see if I might have a cyst. I'd sure missed those. (<---sarcasm) The poor nurse was patient despite the fact I couldn't lay completely still. They'd given me a shot of Dilaudid before taking me back, but it didn't even take the edge off. During the ultrasound she asked me when my last period was, and when I told her I'd had a hysterectomy months ago, she looked at me blankly for about two seconds before mumbling that she needed to ask the doctor a question. The doctor returned with her and informed me I had a very large cyst fused to my ovary, and that due to blood flow being restricted, they needed to do emergency surgery.
Before they took me to the OR, he told me he would try to save the ovary. I woke up without that ovary. Just as the doctor who'd fixed my left ovary predicted, I'd had another torsion. This time I wasn't as fortunate. A large cyst had fused to my right ovary and caused it it to twist over twice, completely cutting off the blood flow. Because they assumed I had a kidney stone and didn't immediately fix it, the ovary died. I had a large, dead mass inside of me, and it was black and disintegrated wherever he touched it. I have pictures. I left the hospital with one ovary, but that's still enough for your body to sustain the necessary hormones.
Fast forward to June of 2013...
I still had occasional cysts, and I could feel it when they burst. A particularly bad one took me to the floor one day, but instead of the pain getting better, it continued to worsen through the day. I knew the routing by now, and we went to the ER. I stood my ground and made them do another ultrasound (after all, why not revisit that fun experience) only to find out I did, indeed, have another cyst that hadn't burst. They could still see blood moving, so they opted to send me to my own gynecologist instead of addressing it that night. Unfortunately, my gynecologist had moved two years ago, and I hadn't found another one. I realize I should've been seen for routine visits, despite he hysterectomy, but I avoided doctors as much as possible. This time, however, I met another angel in the form of a regular person. I adore her to this day—a hero in my eyes.
Dr. A, as we'll call her, listened patiently to my lengthy medical history and told me we needed to go in, drain the cyst, and check on my remaining ovary. We didn't waste any time, and I was there a few days later. I woke up to find out I'd had another (this is #3) ovarian torsion, but we found it in time and were able to fix it. So we thought. Within days of my surgery, the same pain returned, and we were both afraid the ovary had twisted again. Surgery #2 revealed torsion #4. Yep, it was twisted again, but we had already decided we couldn't save it this time because it would continue happening. I left the hospital with no ovaries this time, but I did have hope things would get better.
You've heard of menopause, I'm sure, but have you heard of surgical menopause? Regular menopause comes and goes as a woman's estrogen levels drop lower and her ovaries stop producing it slowly but surely. Surgical menopause is an abrupt loss of hormones, so the best description is hitting a break wall. Dr. A had hoped I would have enough lingering hormones of my own to get me through two weeks of healing before starting me on a replacement. I didn't. I spent weeks feeling like I had the flu and not sleeping. The constant chills and shivering despite feeling like I was burning alive inside on top of not sleeping more than a couple of hours a night were miserable. On top of that, pain returned to my left side again. We managed to get the hormones under control (Thank you God, for allowing scientists to create those tiny little hormone patches), but we couldn't figure out the source of the pain. The floating rib on my left side would push up when the pain was at its worst. You could actually see the point of it through the skin when it was bad enough. Exploratory surgery was the best option, and by then I didn't care as long as it stopped.
Surgery #3 revealed that, while I had some adhesions she was able to remove, nothing else was amiss inside. We were hoping those adhesion and inflammation were the cause, and time to heal would fix it. It didn't. This time she referred me to a general surgeon whose personality was a bit too close to Dr. X attitude-wise. He barely let me talk, cut me off, and had absolutely no clue what would cause my pain and the rib movement. He did some research while sending me to a urologist to rule out kidney stones. The urologist informed me I had two kidney stones only to tell me later they mysteriously disappeared. Go figure. The surgeon found a couple of references to an obscure rib condition, but he couldn't decide for sure if that was the cause. The pain persisted, and the general surgeon decided he needed to do his own exploratory surgery. While undergoing my fourth surgery in 8 months, he was going to give me direct injections to that spot to see if he could pinpoint the exact cause and location of the pain. Despite being eight months pregnant, Dr. A came to the hospital and scrubbed in for my surgery—just to be with me and keep an eye on things. She came in to talk to me before surgery just for support. She wasn't being paid to be there that day, she's just that kind of person. The surgeon couldn't find an obvious cause for the pain, and a couple of days after surgery, the same pain returned, and he said he couldn't do anything else for me. He told me to get in contact with the Mayo Center.
To shorten the explanation, an asinine screening nurse told me they couldn't do anything for me either because they didn't treat flank pain. Dr. A was incensed and said she had no right to diagnose me over the phone. She offered to call them herself and get me in, but I was so completely done with explaining my story repeatedly that I decided to suck it up and deal with it. Over time, the intensity of the pain lessened. I have a high pain tolerance, so I didn't take medicine for it. I still have trouble with it sometimes, but it's never anything I can't bear. We all have something it seems, so maybe this is mine.
I had a total of seven surgeries from October 2003 to February 2014. One in 2003, two in 2009, and the last four were within eight months of one another between June 2013 and February 2014. Those eight months were a blur of healing and surgeries. Dr. A was so good to me during that time—and still is anytime I see her.
I'm not bitter, angry, or event resentful. I'm not embarrassed anymore either. My experiences are part of who I am. They are a testament to strength, not something to hang my head in shame for.
Due to the length of this story, this was posted in three parts.
The country and name of the doctor are intentionally kept anonymous. The purpose of these posts isn't to spread negativity but to give others going through infertility the knowledge they aren't alone in their struggles. Infertility sucks enough without people taking advantage, and my life was made so much better because a few women spoke up and shared their knowledge. Feel free to reach out if you want or need to share your story.
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