It all started shortly after we got married in 2012. I went to see a new OBGYN to discuss coming off birth control to try and get pregnant. Holy Cow, that was an appointment or consult I was not prepared for in the least! I had all these facts and horrible statistics of an "advanced maternal age women" thrown at me as well as my odds of having a child with something wrong. I was not even 35 yet the "golden age" that starts higher risk pregnancies. I was warned and given information on genetic testing and pre screening as well as a healthier pregnancy diet. Um..hello wasn't it his job to encourage me to get pregnant he did make a living delivering babies!?! He also warned me that he has heard the first month coming off birth control could be difficult especially with my dysmenorrhea (painful periods) which I had at 14 and the reason I got on the pill. Well he was right it took me to the cool bathroom tile floor from the pain and symptoms that went along with it. He also warned that it would probably take a few months for me to ovulate on a regular basis if at all after being on B.C. for so long. He also suggested to try using ovulation test kits and keep track of things once I started ovulating. Well, it took a several months of negative test but the smiley faces finally started to appear on my fertile days.
* I wish that any of the GYNs I saw had mentioned to me that maybe taking a break from the pill would be helpful or that I should have gotten off it sooner than I did.
Well a few more months went by and I started having very painful periods again that over the counter meds would help anymore. It was starting to interfere with my life and work. I went for a follow up and to hopefully get some medication for the cramps. We discussed that I had started ovulating and he told me to use a calendar to keep a log of everything. Finally, after a year it was time to do some preliminary fertility testing and blood work on me to find out if everything was ok. That came back all clear so then it was the plan to have some further fertility testing done. Once again I was given all the statistic as I had aged and a list of all the test she wanted without much detail given to me. The lack of detail and tact this women had as she counseled me about caffeine in take and aging motherhood while she sipped her kettle of coffee with a chocolate breakfast bar should have been a clue of the kind of attention or lack of I was getting, but I digress. I researched all my testing and then started to urge my hubby to get tested too, his was easy less invasive than my test. He finally humored me and even the urologist commented that I was ahead of the game. We got his results from both his test he was fine which I kind of hoped it would be him as his can be easier to treat and the fact I was scared it would be me, awful I know. By this time frustration, disappointment, sadness, failure and anger were starting to become monthly cycles every time I took a negative pregnancy test. I kept charting away and started my fertility testing praying it would all come back ok or give some insight as to why we were not getting pregnant. Everytime a test came back all clear or a good report that I was healthy and no reason why I couldn't get pregnant, yet there I sat not pregnant. Onward we kept trying and charting, so not a romance booster to the love life planning it out and charting your love life. We used all the tips and tricks the urologist and OB suggested. I was hopeful that things would turn around we started to be more healthier and lighter in the pounds department.
We got busy with life and a move to a new city in 2014 away from friends and family yet still kept trying even though time was ticking away. I started having odd new symptoms that concerned me but the OBGYN was not worried about them. Once we moved I immediately got a new OBGYN here since I need a refill on my pain med. She( a very young female OBGYN out of school a year or year and half) took one look at my scans from my testing and asked if I had been told that I have P.C.O.S.(polycystic ovarian syndrome) I said no. She said that I had it and it explains why we were having difficulty getting pregnant and why I was healthy but holding on to weight but other than that didn't go into much detail. She told me that I should try metfromin that it helps, granted I had no problems with my sugars but she said that P.C.O.S. doesn't process it well and that I can still have normal levels but this would help with weight loss. I researched it and I had some of the symptoms but NOT the classic one but at this point I was relieved to have some kind of answer as to what was going on. The more I researched and talked about it with people it sounded like I really didn't have this. The metformin was awful it made me so sick and was not helping at all with weight loss, so I stopped taking it. I went back again after I started to have odd changes in my cycle and other symptoms that really concerned me. She just said oh that is what P.C.O.S. does and we talked about how I was really trying to loose weight. I mentioned that the only reason I can think of that I am not getting pregnant is it is my bodies way of protecting itself, it can not handle me being pregnant at this weight, she kind of chuckled and said yeah I could be healthier. I began that lovely roller coaster of a journey of weight loss and continued with weekly bi weekly check up on my progress. Needless to say it only took 3 visits in after that where her bedside manner, tact and cooth as a person where questionable enough for me to have to restrain myself from reacting to her as she told me "Look you just need to choose right here and now which is more important getting pregnant or loosing weight and being healthy?" To me it was not a choice I wanted to be healthier for myself and that would benefit my future kids it was not an either or situation for me. She also told me that if I wanted to get rid of some of those symptoms I complained about I should get back on birth control-WAIT what...that totally defeats the purpose of everything we have been working for. (she said my symptoms were not normal but she shrugged them off again!) I kept at the weight loss and all my symptoms got worse even though the doctors kept saying they do get better with weight loss LIES LIES LIES I tell you. I switched doctors in the practice and they discussed trying Clomid as an option even thought I was ovulating very regular and having abnormal period every month. I knew deep down something was wrong and that these changes should alarm more than myself and family. They did an ultrasound when I came in with abnormal bleeding and noticed changes in it since the last one that was done the previous month. They talked and came back and told us that my best options where to start the Clomid or have a DNC. I did not want the DNC at the time it was so invasive and my hubby and I talked and looked into the Clomid.
In the meantime I ended up in the Emergency room the night before my 36 birthday due to bleeding and pain when it was not time for my cycle, the triage nurse made me go. Actually she told me to hang up and dial 911 since I was alone and in such pain...well I knew that bill and a ride was not worth the $2,500-$3,000 bill that insurance would not pay. After a very long 8 hour wait there which I tried to leave several times but the hubby would not let me, I was ready for the DNC and wanted it. I wanted the pain and the crap that was going on to just stop. I got IV meds & fluids and was told that I had heavy menstrual bleeding and dysfunctional uterine bleeding and to follow up in the am with my OBGYN. I knew something was not normal I had been clotting a lot, having extremely heaving bleeding, pain, headaches and hot flashes to the point I could not leave the house for 2-3 days during my cycle. I was also bleeding for 20-25 days a month along with some of the other symptoms for months and the doctors still did not seem that concerned. I took matters into my own hands after a comedy of errors with this practice as well as 6 months time. I made an appointment with a specialist in the group that dealt with menstrual problems, I gave them one last shot. After talking with him for 5-10 minutes he said I clearly do NOT have P.C.O.S., he admitted I had been treated wrong and let down by the other doctors. He said I deserved and needed answers as to what was going on and the infertility issues. He said he was sorry and I clearly should have been offered help and given the opportunity to see a fertility specialist for further testing and treatments after a year not the 2 years we were at and down almost 20 pounds! He said he was very confident and strongly felt I have Endometriosis and that is what was causing all of the crazy symptoms from bleeding to hormone surges. I felt the biggest weight lift off my shoulders and tears well up in my eyes. Finally someone who did not make me feel I was crazy and that something was really wrong plus and it was treatable. He said I did everything that the doctors asked of me and then some, he wished more patients would be like that. He referred me to a fertility specialists they could both, be the one to diagnose and treat the endometriosis since you have to be scoped in order to have the formal diagnosis and explained that procedure. I started to look forward to this and try to set up the appointment. This would no longer affect my quality of life or lack of, I would hopefully be normal again. I knew treatments would not be the fun part but at this point I have developed a pretty high tolerance for that kind of pain and it would be worth it to get rid of all of this. I was once again let down by the staff and left to get the referral going with my insurance company since it was not in network make sure they got all the information they needed for an appeal and get the notes for the specialist together. It took weeks almost a month I was livid so I confronted the nurse in person about it several times and still got no help. I was at my breaking point to say the least I made calls and logged formal complaints with the practice and their managing hospital group. I got several apologies which seemed worthless after no follow through or very little. I got my records and searched out a new OBGYN I deserved better, they had failed with their standard of excellence and I was falling through the cracks. I wanted someone who listened to me and just plain did their job plain and simple from the front office to the referral coordinator down to the nurse. Just stop saying your going to do it and weeks later say oops I forgot. If this was their loved one or themselves they surely would not be so lazy about getting things done and too much time had been wasted already.
This has been an emotional roller coaster that brought emotions I had no idea I would have nor expect to have. The anger, guilt, fear, resentment. disappointment, inadequacy, deep sadness, depression, feeling of loss and deep rage that would appear out of no where all amplified at times by all the extra hormones I had running through me. I had moments where I thought my husband would not want me anymore, I had promised or given him hopes of having babies and brought him on this ride that was not what either one of us had signed up for. I was damaged goods, my body had failed me. While he could not comprehend all that I was going through and I could not always put into words all my feelings either he stood by my side. He was my rock on the days I needed it and promised we would have a baby one way or another, we would adopt if we needed to, he was not going anywhere this marriage was a for life kind of thing. I can honestly say I gave him many reasons to question that sometimes as my emotions where a minefield and out of my control sometimes!! I also had times I cried in the shower because I was so angry and frustrated at my body for failing me and putting me through all of this. I truly did not understand why all of this was happening but I also started realize that a baby probably was not in my near future, I most likely would not get pregnant on my own. I struggled with this and talked about it with my husband and we agreed to put a pin the whole trying to have a baby and just focus on us. So we stopped trying and I came to a place of peace with that and looked forward to being scoped and still hoped that this could help with fertility but I would help my pain and other symptoms. We would handle the baby situation after if we needed to but we were focused on getting me treatment. This was a process and coming to peace does not mean that there is no more sadness but letting go of all the other emotions that hindered me and us. I had to let it go and accept I once again had no control and no matter the fact I did everything the doctors told me to do it would not work, I needed to address this and get my life back. My husband also deserved to have his wife back not the shell of a person I felt I had become. I trusted that I had a path and purpose even though I could not imagine why I had to go through all of this. I could see the power that all of this has to destroy couples a statistic I was given luckily it made us so much more stronger as a couple, if we could get through these darker times we could get through anything.
My hope is that if you feel something is wrong deep down DO NOT let anyone dismiss it, get another opinion. I do not know why I felt a sense of loyalty to any of these doctors I guess I trusted the system I used to work in but it has changed so much since I left. I also learned doctors DO NOT always have all the answers and if they had just admitted that with the promise of leading me in a direction of an answer things would have been different. Sadly you HAVE to be your own health advocate you may have to be firm or get forceful aka be the bitch but DO IT!!! You are the one who could be loosing out and suffering. Do not let yourself fall through the cracks as I did, it can happen to anyone. I hope people also think before they speak when talking with someone going through this. People need to be more sensitive to this issue and it is not always a quick or easy fix sometimes there are no fixes to the problem with infertility. These issues are far more common than people realize we just do not like to talk about them. Like I said this was my long journey and experience and I hope it helps someone else.
***DISCLAIMER: I know that not all doctors are bad and I have just had a run of them and at a poor practice was in the mix. I just feel that patient care has gone out the window there is such a lack of it, I see it at all kinds of practices and the all mighty dollar is more important, between that and the insurance company healthcare is circling the drain. That is my opinion and not meant to be a political statement just an observation from many years. I do have doctors that I loved and totally trust with my healthcare and are confident in guess they set the bar pretty high. I am just not willing to sit by and put up with poor service and horrible patient care anymore. The fact is being poked, scanned, prodded, screened and every other kind of testing at appointment after appointment with no real answers is NO way to live, no to mention the amount of money wasted.
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