Diagnostic Process

Hello,

My name is Cindy, I am 24 years old. Any advice, encouragement, reassurance, or support anyone can offer would be greatly appreciated.

I started my period when I was 14 and had experienced painful periods intermittently throughout puberty, it was never consistently bad though. But for the last year and a half, I have had consistently painful and abnormal periods.

 My periods start with immediate vomiting and extreme pain quickly follows. I typically have diarrhea very badly throughout my entire period. For the first day of my period, it seems that the only thing I can do is lay on the floor of my shower (crawling to the toilet once in awhile) until the hot water runs out. Then if I can take a Motrin (Because of joint pain I have always had a prescription of 600mg Ibuprofen) without vomiting I can usually leave the bathroom for a while and lay on the couch with a heating pad, again, intermittently getting up to have diarrhea.

After experiencing this type of period for four months I went to my GP. She prescribed me a medication to stop nausea, told me to begin taking Motrin three days before my period was set to arrive, and suggested I get an IUD.

I didn't feel comfortable with that answer, I knew something was abnormal and she didn't treat it like it was abnormal.

I did find some improvement with her suggestion of starting Motrin days prior to my period but found it hard to gauge exactly when my periods were going to come I vacillate between 26-31 day cycles. The nausea pills also helped some, but often I couldn't take them fast enough and would end up vomiting anyway. I also started experiencing another symptom. During my period (usually on the first and second days) I would have a very strong shooting pain in my rectum.

 I decided to seek a second opinion and made an appointment with a Gynecologist at my local teaching hospital.

 This appointment was awful. I went in expecting to be listened to, I thought this gynecologist might be concerned. I had done a bit of online research and found that my symptoms matched closely with Endometriosis. I wasn't convinced that's what it was, but I did expect the doctor to give my symptoms more weight. She told me all my symptoms were normal. Everything I described was normal. She also offered me an IUD.

When I asked about the possibility of Endometriosis she said "Typically to get that diagnosis we need to see it somewhere else in the family. Do any women in your family have this?" Well, of course, my answer is no. My mother always had extremely painful periods and both my grandmother and mother had difficulty getting and staying pregnant (my grandma had countless miscarriages and 3 stillborns.) My grandma had also been diagnosed with IBS early on and has lots of problems with her bowels.

But because no one ever suspected or diagnosed either of them, this doctor doesn't believe that's what I have. When I asked about the shooting pain in the rectum, she said it's common to have some gastrointestinal discomfort with periods. The pain is due to the heavy bleeding and a Liletta IUD should solve all my problems.

Essentially she didn't listen to me or do anything. 

I felt awful, unheard, and like I was making the whole thing up. Maybe the periods aren't as bad as I think they are? Maybe I just have a very low pain tolerance? But I've been through countless painful medical procedures for my heart (I was born with a heart defect) and I try to never complain. Has anyone here ever had or heard of a blood gas? Yeah, it's like the most painful test I've ever had done. I had it done in an ER with no pain management or numbing agent. I've sprained my ankle, broken my foot, had pneumonia, bronchitis, pleurisy, pericarditis, and I've had my gallbladder removed. None of those felt this painful. I was absolutely discouraged and felt insane.

So I just kept going like I was. I didn't get an IUD or go back to that doctor. I just continued to take Motrin before my period was set to arrive and gobbled it like a crazy person through the first, second, and third days when the pain is at its worst and Motrin only takes the edge off. I could manage not to throw up all the time if I was taking the pills given to me for nausea. The only thing I couldn't help in any way was the rectum pain, that would come and go throughout the first through third days of my period with no warning. Motrin did nothing to help that pain.

Durning my last period instead of the rectum pain starting when my period starts, I started feeling some discomfort in that area beforehand. Then when my period came the rectum pain was stronger and more persistent than I'd ever felt it. It also didn't taper off after the third day of my period like it usually does, it just kept happening throughout my entire period and then a little bit afterward. 

The rectum pain is what finally pushed me to get a third opinion. I found a private practice gynecologists with good reviews, located across town. I would have to pay a copay, but at this point, it is well worth it. 

I described my symptoms (without telling her what I thought it might be) and she immediately told me she suspected that I have endometriosis. She explained what endometriosis is and that it can only really be diagnosed with surgery, that it has no real cure, and that it can cause infertility. She suggested I start taking an oral contraceptive continuously to stop my periods altogether. She explained that an IUD is not her treatment of choice when it comes to Endometriosis because she doesn't believe it always releases enough hormones to slow or stop the abnormal tissue from forming.

She ordered a pelvic ultrasound, but of course explained that it will not show endometriosis. It's hard for me to remember now but I'm pretty sure she said she's doing the ultrasound to check for cysts.

She then did a physical exam. She didn't use a speculum and only felt around with her hand. She told me she wanted to push around to see if it would cause me pain. The pelvic exam didn't cause me extreme pain, but it did hurt a bit, mostly it was very uncomfortable and made me immediately nauseous when she was done and pulled her hand away. She told me she felt some nodules and I'm pretty sure she followed that statement by saying that could be a sign of endometriosis. She told me to come back in three months.

I've been reading and researching like mad since that appointment. I've also been taking the birth control she prescribed me (Mononessa 28.) I have the ultrasound scheduled for next week.

Even though I am glad this gynecologist listened and seems to have a good understanding of Endometriosis, I have been looking into a doctor who specializes in Endometriosis and who does the correct type of surgery. I live in Portland Oregon and found a surgery center in Gig Harbor Washington. Approximately 2 hours away from me.

Here are the questions currently swirling around my brain:

If the ultrasound is clear, the birth control helps, and the gynecologist is happy with that at my three-month appointment, should I still push for the surgery?

Should I contact the surgery center? If so, when?

Should I really wait three months and go back to see what my gynecologist says?

Is it okay to just remain on the birth control without ever having a diagnostic surgery?

Would that be bad considering my bowel related symptoms?

What about my fertility?

I would like the option of having children someday. It's currently not even certain that my heart would do well with a pregnancy or that I wouldn't pass on a heart defect to my child, but I would still like to maintain the option of having biological children.

Help! 

What should I do? What would you do?

Thank you for reading.

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