Who Am I? How Did I Get Here? Part 1

Who I Am

I'm 38 and allergic to the world. I make allergists cringe when they see my chart. I'm the patient that even allergists don't see everyday. I don't just get to be allergic to the normal airborne allergies, no, I'm lucky(?) enough to be allergic to the base component of the American economy - corn - and several of the common elements in the US market: soy, milk, legumes (any bean, pea, or peanut), and tree nuts. And I have anaphylaxis - and not the type that ER doctors recognize, either.

I'm also infertile.

To add insult to injury, I can't even get drunk to numb the pain since even 0.001% ingestible alcohol content. So, slipping alcohol to me can literally kill me. Adds a whole new element to the situation.

In my late 20s / early 30s, I was lucky enough to contract asthma and GERD due to Chlamodiphila Pneumoccocus - a disease seen only in those immunocompromised. I spent about 6 months on prednisone. This is not the same disease as Chlamydia Trichomatotis, but they are related. When I got it I thought I had researched all about it, but I didn't look at Chlamydia Psittacae - which very rarely has caused tubal infertility. So I had a false belief I was fine - but as I learned more, the damage might have been even earlier.

To those of you who think I was promiscuous, I was not. Sure I indulged in m.utual m.ast.urbation and some o.ral s.ex - but I was careful. I always used a condom even for that. The first man I had "real s.ex" with was my husband.

The Infertility Journey

At 37 I finally convinced my husband something was wrong and we needed to see someone. I had been trying since I was 35. We got married when I was 35. His response was always to be patient - even then I was crying at night because I knew something was wrong.

At 35 I started where most women start, asking my OB/GYN why I wasn't getting pregnant. She told me not to worry. The next PAP smear appointment - at 36 1/2 - she told me to try for 6 months with an ovulation detector. Between that time and the time I called about this I bled abnormally during the week between Christmas and New Years - and no one would see me.

The ovulation detector didn't work. I called and she referred us to the first RE (Reproductive Endocrinologist) we saw. All of you struggling with infertility know how hard this is on a marriage - to have s.ex on demand is not a fun thing.

I was already 37, late to the table as it were.

The first appointment she had a student take my history - I should have objected. Hindsight is everything. Why didn't I? I firmly believe people need to learn, but I'm not sure that the student fully understood the impact of my medical history - as a later consult bore out. I know I told this person that I had had chlamydia pneumonia - but from what I understood that was not an issue. I also told her all the medicines I thought I was taking. I said I was taking A.xid, but I was really taking cimetidine - this is a very big deal for some test results. But I will explain more about this later.

When the doctor came in, she was all positive and happy. My husband disliked the clinic from the beginning, I think, and infertility is a couple's disease - not a disease of either the man or the woman. It is very important that you both be comfortable with the physician's competence. My husband and I are very analytical people, this makes a difference in how we want to be dealt with. We prefer an analytical physician to a "perky" physician.

We did the initial tests, except for the HSG due to my allergies. (Seafood is not good for me!) From these, it is determined my tubes are open, but my FSH is high (16).

I will never forget that day. My husband had actually argued we should meet at the clinic. He wouldn't admit that there might be a need for one of us not to have to drive. I was right about that, and he knew it. He was just being a p.rick. We did end up going there together.

We ended up being turned off from this clinic from the way the news was delivered:

• I remember the doctor talking about all the childless couples at the vacation spot she returned from. My heart sank as I knew she was basically saying, "You can't have your own children." It may not have been rational, but that was the feeling I had in my heart.
• To my husband, there was a student in the room who didn't have enough sense to stop smiling. I don't remember her seeing there.
• To me, even after I said "That is not an option." to DE - I will explain why later - she continued on and on about.
• When I asked her about other reasons for the high FSH, she said there wasn't. She was wrong. I'm a trained librarian, maybe not a medical librarian, but I know how to use Medline and MeSH.
• I asked why this was the first month I had not seen an LH surge. (I had taken Clomid.) She said some months you don't ovulate.
• There was a cyst on my ovary.

The first thing I said was: "You made me wait. I told you we didn't have time." The doctor stopped us from having the conversation. Yes, I am still angry that I'm in this situation. I knew something was wrong but NOBODY listened to me. It was devastating to know that my husband had made me wait as much as anyone else had. I had had to pull teeth to get him to agree we needed to see someone.

My husband had the presence of mind to get the records right there and then - no actual pictures from the Saline Tests, but enough to move to a second opinion.

That night was the most horrible night I ever had. I felt so broken - I couldn't stop crying. I couldn't move from the couch. I didn't want to talk to anyone. Both of us were in front of our computers looking up everything we could find about high FSH.

We found a lot.

First, I have more fraternal and identical twins in my family tree than is normal.

• My mother is a fraternal twin.
• My maternal grandmother is a fraternal twin.
• My paternal grandmother is an identical twin.
• My father's mother's father was an identical twin.
• My mother's double-first cousin (siblings marry siblings) had two sets of fraternal twins.
• My cousin has identical twins.

Twinning equals elevated FSH no matter the ovarian reserve.

We kept reading and I found out that cimetidine - which I thought was generic Axid (nizoral is the actual generic) - elevates FSH. When I called the doctor's office the nurse knew of what I spoke, but the doctor dismissed it. The insurance company will not accept a reading with cimetidine in the bloodstream as valid.

We started looking for a new RE to talk to. We were armed with a few literature survey.

Always bring a survey, not individual studies because that means there has been
an extra layer of scrutiny for the studies in question.

The literature survey we took that indicated that someone with my history may not allow the FSH score to be an accurate indicator of Ovarian Reserve. Familial twinning was the biggie. No matter what, I will have an elevated FSH.

My husband started to G.oogle all of the REs our insurance take in our area. I was just going to go from the top by how close they were to us on down. I was not thinking very clearly. I called my good friend who had worked with the state acupuncturist's society and found out several did work on infertility. I got the name of an acupuncturist and immediately called her.

I poured my heart out to this poor woman. I know she hears it all. She has always been in a helping profession and, even though I see her partner these days, she really helped me that day. I found out that most people love the first RE I went to. She was just not a good match for me and mine. I started acupuncture soon thereafter.

We finally found the right RE to see next. He had been in practice for many, many years. He is well-respected in the field. He pioneered some of the standard procedures in place today in IVF and fertility medicine in the USA. We did a citation analysis on him, and found that he worked with difficult cases of all sorts - not just fertility.

The first appointment we came prepared. I had written up my entire medical history pertaining to my reproductive history - except the pneumonia. Everything I knew about the pneumonia had told me that it did not cause infertility. The appointment lasted about 2 hours. He noted that TSH was elevated by the new standards of the Endocrinological society.

Reading the radiological report on the saline test, he looked confused, he read it again. Realization dawned on him. It was not a cyst, rather, it was ovulation if what the radiologist wrote was correct. The report also indicated my tubes were open - at least one was.

When I told him I had always seen ovulation surges until the month I took clomid - and had since - he said that in very rare cases it can act as a birth control pill. Considering my medical history, it was possible that that had happened to me.

He said he could not rely on the tests given due to the fact that I had had cimetidine in my system. And, he wanted to make sure my TSH was not truly elevated. He then asked if there had ever been any other major illnesses I had.

"Chlamodiphila Pneumonia, not the STD kind."

From the tests we had he thought that my tubes were open. He looked at me and my husband claimed I had never told him that. I had. (Why don't husbands remember anything?) The doctor recommended that we consider a laparascopy. I was ready to do it right there and then. My husband was not. The doctor recommended 3 Femara cycles, if that didn't work, we should do the diagnostic laparascopy.

We did 3 Femara cycles. Nothing happened. Then I got a nasty sinus infection. I scheduled the lap for December - perfect timing for the Christmas break, I thought. Well, the universe did not agree. The night before I was to have the laparascopy, I got the worst yeast infection I have ever had. It was 9:00 PM before it became noticeable. (Mind you, I often have had to be told I have a yeast infection after my pap smear. They normally don't itch that bad.) That morning the doctor had to cancel me and told me to reschedule with his secretary. He offered me a prescription for D.iflucan, but I decided to use M.onistat since it was less invasive.

This was a mistake. Continued in next post.