Sunday, October 31, 2010

Meeting an IF friend

So my job involves working with small children. This means going to their houses and having a lot of contact with their families. I have been working with this one child for about 9 months now. He is the youngest of four boys (the oldest is in first grade). Mom has always been very forthcoming about how she did IVF to conceive her first and then the twins. When she and her husband thought they were done having children, she got pregnant naturally with her last boy.

I have a good relationship with this Mom. She is very on top of her house and children and does pretty well considering she has 4 boys under the age of 8. I told her ahead of time that I was going in for the surgery and she wished me the best of luck. She said she had had laparoscopic surgery in the past and that it wasn't that bad. I basically told her that I could lose an ovary or it could even be a tumor and she said that I should relax and that it will be minor. She also said to stop reading stuff on the internet, because everyone is different.

So I had my next visit with her son this week. When my time with the child was done I went to get a signature from her and talk to her about what we did, and she asked how I was doing and how everything went. She said I didn't have to tell her anything, but of course I felt comfortable enough to tell her everything. We talked for about 20 minutes and she gave me hope.

She said first of all to be persistent. If we know we want to have children, we should make it happen. She said that she and her husband did 3 IUI's and then 5 cycles of IVF before they got pregnant with their first. On the last cycle of IVF they implanted 4 embryos and she said they needed to sign a waiver from the clinic to do so. She said she had joined many infertility/IVF support groups and most people who did IVF got pregnant. She said that maybe I shouldn't give up hope on my tubes and that the Lupron might work. She also said that when it comes to making a baby, I have 2/3 of the most important things going for me (ability to produce normal eggs and normal uterus). The tubes don't matter that much because you can easily bypass them. IVF skips a major step and you don't even have to worry about the sperm and the egg meeting.

I left their house feeling much better. I feel now like we may have a chance for having children after all.

Thursday, October 28, 2010

laparoscopic surgery

I had surgery a week ago yesterday to remove the cyst.

We got to the hospital early and these people all came in at the same time. I had someone taking my vitals, someone taking my history, and a two-person IV team all there. The nurse taking my history was prepping me for the surgery. She told me what to expect (about 4-5 incision points on lower abdomen) and she said she wanted to keep my pain below a 5 on a scale of 1 to 10. I saw in my hospital gown and slipper sock things and waited for them to come get me to go to the OR. I was scared about anesthesia and how it would affect me. The nurse said they would be waiting for me outside my room at 10 AM to take me to the OR. The hospital was too prompt, and they showed up at exactly 10.

I rode down to the OR in the elevator with my husband and another guy going into surgery. His family was really upset and his daughter was crying. I'm not sure what he was going to surgery for, but he tried to crack a smile for his family.

They prepped me in a room before the OR. I spoke with my doctor, the anesthesiologist, a student who asked to observe the surgery, and a resident surgeon. The resident surgeon was trying to make me feel better, but its hard to be comforted by a complete stranger with bad cologne. The last thing I remember is them moving me from one bed to another and putting the mask on my face and telling me to relax and picture some place tropical.

I woke up and immediately felt nauseous. The nurse was there before I realized it with a pan for me to throw up into. I joked later than she wiped my face more quickly than I do myself when I am sick. It was pretty good service, I have to say. The doctor came to my bedside and gave me a quick rundown of the surgery. It was hard to remember exactly what he said and he then said he would come to my room in a little bit to talk to me again. My husband wasn't allowed in the recovery room and before I knew it I was back in my room I started the day in. My husband was MIA and the nurse was unable to find him.

About 45 minutes later my husband and his mother walked into the room. I asked him where he had been and he said talking with the doctor. I'm not going to lie, this guy really talks. He gives very thorough information and makes sure his audience understands. He doesn't end conversations well and whenever we go see him, it's always hours out of our day. To be honest though, I went for a physical for work yesterday with my general practitioner. He only gave me about 7 minutes of his time. It made me really appreciate the time the RE gives us each time he talks with us. He may be repetitive and talk forever, but I'll take that any day over waiting in the room for 45 minutes to see a doctor for 5.

The nurses said I would be able to go home after I had peed, eaten, drank, and walked around some. I was able to pee right when I got back to the room, so one down, three to go. I went for a walk after a few hours hoping this would encourage them to discharge me. The nurses were concerned about my nausea and wanted me to eat and drink some more. My stomach was telling me to be more cautious.

The doctor came up at about 2 PM. He gave us the results: the cyst was simple and fluid filled and they were able to drain it easily. They did not remove the cyst tissue. The cyst was located on my fallopian tubes though, not my ovary. This came as a shock to the doctor and he said he only could tell once the cyst fluid was removed. He then ran the HSG test to run dye through my tubes to see how they are functioning. Here's the bad news: they were blocked proximally in both tubes. The doctor didn't know why. He said he saw a VERY SMALL amount of endometriosis in my uterus and was able to get rid of it. He said it was possible my tubes were filled with endometriosis, but I find that hard to believe. I've never had painful periods or any symptoms of endo. He then said that he was going to try Lupron injections for 3 months to see if we could clear up the tubes. If the Lupron didn't work, IVF would be our next best bet. He said that although my ovaries appear polycystic in appearance, getting me to produce eggs should not be a problem. He also said my uterus looked fine and that there were no abnormalities. He seemed to think we would be great candidates for IVF, but just the mention of it made me nervous. The money and the thought that we may not be successful was scary.

I took Wed-Mon off from work and returned this week on Tuesday. The time off was really hard because I couldn't stop thinking about my tubes. I was prepared to lose an ovary, but not prepared to hear my tubes were blocked. I really thought we would be able to remove the cyst and start trying, but with blocked tubes there doesn't appear to be much point. We got back to see the doctor tomorrow and I am wondering if he will start the Lupron of wait another month. We will see....

Wednesday, October 27, 2010

Second Appointment with RE

So I returned to the office on September 10th. I had an ultrasound scheduled first and then I would meet with the doctor. The ultrasound tech was a little more friendly this time and she explained during the scan that the cyst was the same. I had been hoping it would have changed even a little, but no, the sucker was still 8 cm.

The doctor said laparoscopic surgery was my next best option. The cyst wasn't changing and it was causing me more discomfort. He said there was a possibility the cyst was an endometrioma which means it would be endometrial tissue and be filled with blood. He was hopeful it was just a simple fluid filled cyst, but he also said there was a slight possibility it could be a androgen (male hormone) releasing tumor. The best indication was that is was fluid filled from the ultrasound. He said with an endometrioma one often sees small specks within the cyst on the ultrasound. Mine just looked big and black.

He shared the results of the blood work and said that most things looked ok. The results indicated that I did not ovulate, but I was also put on the pill just prior. The doctor said that might change the results. My insulin and blood sugars levels were good and there were no signs of insulin resistance. This was GREAT news. I wasn't really ready to be diabetic although it was a good scare to avoid sugar.

He scheduled me for surgery on October 20th and prepped me for everything that could go wrong. I could end up getting cut open to look at things further, they could completely remove the cyst, or even completely remove my ovary. This was very scary to me as I had only gotten my wisdom teeth out previously. I was prepared for the worst but hoping for the best. He gave me the option to get off or stay on the pill at this point. I decided I wanted to continue to take it since it would avoid any new cysts from forming.

At my next appointment, I am going to request copies of the ultrasounds so that I can add them to this blog. The cyst was huge and pretty impressive on ultrasound.

Sunday, October 24, 2010

Mid Aug-Mid Sep

The next month went very slowly. At first I became really into my diet and eating the right things. I thought maybe what I had been eating had caused the cyst. I tried to eat only organic meats (no hormones) and organic dairy products (no hormones). I thought if I avoided hormones externally maybe mine would improve to normal. I also had to get blood work done to check my blood sugar levels and the possibility of me being insulin resistant. I wanted to eat healthy so these results would be good. I would get the results at my next RE appointment.

We weren't able to have sex and I was just on the pill. This wasn't what I had hoped we would be doing exactly. My appointment was coming up, but time really dragged. I had my appointment on a Fri in September.


My husband and I had planned to take the next week off as vacation. We had wanted to go away camping or to the beach, but assumed it wasn't a good idea because of the cyst. We planned to spend the week at his family's lake house by ourselves (a rare treat.) We spent the week hanging out and relaxing. I felt the cyst a lot that week and it caused me some discomfort. I felt sad that we weren't able to try for a baby, let alone even have sex. My husband was very supportive, but I still hated the cyst.

The Cyst

So the doctor sent me get an ultrasound in order to check my ovaries for cysts. The ultrasound tech comes into the room and starts the scan. She was very quiet and remarked, "I'm surprised you can't feel that." She took about 5 minutes and didn't really want to answer any of my questions. She said that I should get dressed and go back and talk to the doctor. At this point I became extremely concerned because they said they would give me the results of the ultrasound the next time I had an appointment. Now they wanted me to talk with the doctor again?! They told me to get my husband from the waiting room so he could hear the news as well.

The doctor said I had a big cyst on my left ovary. It measured about 7-8 cm and appeared to be fluid filled. He seemed nervous and said he would have to do a pelvic exam to be sure I wasn't in danger of the cyst rupturing. He wanted to put me on the birth control pill and see whether the cyst would shrink. I was to take the pill until my next appointment. I wasn't supposed to take the last week in the pack, just the first three weeks of the pills consecutively. The worst part was he said "nothing in the vagina" until we get rid of the cyst. He warned me that cysts often rupture during or after sex and that this could be dangerous if it happened. I made an appointment for about 6 weeks later and left the office suddenly extremely aware of the cyst.

Friday, October 22, 2010

New Endocrinologist

When I left the office of the local endocrinologist, I knew I would not be going back. I needed to find someone who was more compassionate and caring and treated me as an individual. This first guy was a jerk and I wasn't going to support his business.

I looked on the internet and called around looking for an appointment with a specialist (a Reproductive Endocrinologist.) I got extremely lucky and when I reached an office in the larger city we are close to, they had just gotten a new doctor to their well-established practice. He was someone with lots of experience who just happened to move to the area recently from Atlanta. In fact, he could see me on Monday (I was calling on a Friday.) I was scheduled to go the next Monday (after my horrible appointment on Wed with the other guy). I asked my husband to come along this time to help have someone else to digest the information and to have some more support. He agreed.

We met with this doctor on Monday afternoon. He was obviously new to the practice because he was unsure of how the procedures went, but he was EXTREMELY HELPFUL. He sat and talked with us for about 3 hours, explaining PCOS, the criteria for diagnosing it, the chances of future pregnancies, normal course of treatment, etc. He then sent me for an ultrasound to check my ovaries for cysts and said that I should make an appointment in another month to discuss the results of the ultrasound.

He used the Rotterdam Criteria to diagnose PCOS in which the patient needs to have 2/3 characteristics to be diagnosed. I already had the hormone levels that were off and I needed to have polycystic appearing ovaries to be completely diagnosed. He said he would discuss those results at my next appointment.

The first Endocrinologist (early Aug)

So the office made an appointment for me to see a local (regular) endocrinologist. We live close to a small city, but I made an appointment at the office in the small city we live in. I figured it didn't really matter since I didn't have PCOS anyway.

I sat and waited in this office for about an hour and a half before getting called in. I had appointments scheduled at work all day, and waiting just meant not working for me. Not working meant not getting paid. Once he called me in, he was very matter-of-fact. He told me I had PCOS due to the blood work from my gynecologists office. He ran his hands along my neck and said "I knew those would be there" referring to the small number of skin tags I had on my neck. He told me I was insulin resistant because my father is diabetic and he said I was not ovulating. He said his office did not do ultrasound to check the ovaries for cysts and that it wasn't important anyway. He said that if I were to get pregnant (since I asked him if it would be OK if we tried), he said that I could have a baby that was a hermaphrodite due to the excess of male hormones. He then asked if he could do a physical examination. When he saw my thighs he said that they were very large and muscular, probably due to the testosterone. He was not nice in the way he delivered any of this news. He was almost mean and insulting and I felt like crying the whole time.

He said he wanted to run more blood work and that he would put me on Metformin to help with the PCOS. He then left the room. He didn't tell me whether we were done or not and I sat there in shock for about 5 minutes before I figured he must have be done. I went out to check about blood work and the office informed me that they don't do it there. I would have to go somewhere else. In addition, the next appointment they had available was in mid-September. This meant I had PCOS and there was nothing I could do about it for another 6 weeks. I just wanted to treat the problem and get pregnant.

I left his office and cried in my car. As I made it to my next appointment at work, the woman I work with told me she was pregnant with her second child. She is unmarried and they tried for one month this time around. Great timing...

When it all started

When I would think about getting pregnant, I though it would be easy. I thought we would be one of those lucky couples who would get pregnant the first month they tried. In all fairness, we've only tried one month so far, but have been on a roller coaster ride that started in June.

My husband and I got married on October of 2009. We knew we wanted children and disagreed some on when we should start trying. He was still finishing his education and didn't want the added stress of trying to start a family at the same time as finishing graduate school. 

Finally in June (after being married 8 months) I broke him down and he said we could start preparing to get pregnant (cutting down of coffee, exercising more, eating healthier, getting a pre-conception check-up, etc.)

I had actually ditched my birth control pill about a year prior  in hopes I would drop a few pounds before our wedding. I had been on the pill for the past 7 years consistently. During the year I was off the pill and we weren't trying, we used condoms and the occasional "pull-out" method. There were a few months where I started to get nervous after no period for 34-35 days. I had one cycle where I didn't get my period for 38 (it might have even been 40) days. But each month I got my period, although sometimes just a little late. During the year I was off the pill, I got my period each month (albeit a long month.)

When we talked about getting pregnant I started to research good books that I could read. I found "Taking Charge of Your Fertility" and started reading. This is where I read it is a good idea to get a pre-conception check-up with your gynecologist. I booked an appointment, excited we could start taking steps towards getting pregnant. In this book I read that sometimes a woman may have longer cycles due to a hormone imbalance. I decided to ask about this at my appointment. The nurse practitioner decided to draw some blood and check my hormone levels. I left the office hopeful that I could convince my hubby to start trying in July. 

Less than a week later I got a call about my blood work. I was not able to take the call at the time and the NP left a message on a Friday afternoon. By the time I got it, it was too late to call the office back since they were closed. She said she would be back in her office on Tuesday. On the message she said that things were "just a little bit off" with my testosterone levels. She said to call her back and we could talk about it. I'm pretty sure I still have this message saved on my voicemail of my cell phone.

I spent all weekend worrying and looking up high testosterone in women on Google. The most common search result: Polycystic Ovarian Syndrome (PCOS). Reading about it I didn't think I really matched most of the criteria. Although I had always been a little hairier than other friends and I had difficulty losing weight around my mid-section, I was by no means obese, growing a beard, diabetic, etc.

When I finally talked with my doctor on Tuesday she explained the numbers and said that PCOS was a definite possibility. My testosterone was off, as well as my DHEAS. She wanted to refer me to a endocrinologist.