As I lay here recovering from my first laparoscopy surgery, I have had a lot of time to think about my past fertility journey from the very beginning. In this post, I am going to mention all the fertility clinics, doctors I saw and what was said to me. I usually don’t write actual doctors names and clinics because I guess it’s too taboo and no one wants to look like they are a disgruntled patient but I am tired of this lack of knowledge, run around, billing, billing and more billing for tests with no answers. Enough is enough, and this last, and final diagnosis from my laparoscopy surgery that I have been asking to have scheduled for the past two years made me want to expose everything that I have been through.

I would suggest you grab a cup of coffee or beverage of your choice and get comfortable because this is going to be a long and messy post. I think to get the gist of my infertility journey I will create a timeline for you. You can always go back on my blog posts from the beginning to catch up, but this way seems the most efficient. I know that this picture below is a little graphic, but that’s the point. I am not here to sugar coat my experience. I am bold, honest and have put up with so much ignorance to a disease that affects 50% of women that are struggling with infertility that I am not holding anything back.

 

From Unexplained Infertility to Stage Three Endometriosis 

Infertility Timeline 2013-2016

September 2013-IVF Florida-Basic consultation (relayed all my previous symptoms with killer periods from age twelve, missing school/work, extremely severe pain when I would work out, BCP my only relief to have a normal life) blood workup for both my husband and myself. Opted in for genetic testing. Scheduled ultrasound and HSG testing.

September 2013-IVF Florida follow up appointment, with Dr. Weismann to go over all blood work and results from HSG test. All blood levels were normal, tubes were open, ultrasound showed multiple growing follicles. We were labeled with “Unexplained Infertility.” Told we could do IUI or IVF treatments.

November 2013-Genetic Testing comes back I am a silent carrier of Alpha-Thalassemia no one says anything.

April/May 2014 First IUI with Clomid at IVF Florida with Dr. Weismann (never saw Dr. Weismann only nurses for everything) opted to do IUI both days. Negative beta.

August 2014 Changed clinics to Boca Fertility with Dr. Peress. Went right into medicated IUI with Menopur and Follistim aggressive stimulation resulting in over 20 follicles. Opted again for IUI procedure both days. Negative Beta.

December 2014-SIS test performed by Dr. Peress was extremely painful he couldn’t see my uterus, so he ordered a Hysteroscopy test before first IVF cycle. BCP priming started.

January 5th, Hysteroscopy performed by Dr. Peress noted a small polyp removed. Pathology was benign.

January 2015-IVF injectable medication started, transferred two 5-day blastocysts. Negative beta. *Noted two fibroids posterior of my uterus was told no biggie. Ask Dr. Peress if my silent Alpha-Thalassemia could be an issue, and he asks me if my husband has been tested. I say no and he shrugs his shoulders. No guidance that my husband should be tested also to see if he is a carrier.

February 2015-Boca Fertility-Asked for a laparoscopy I knew there was something wrong with my history of painful periods, and pain during working out I was told by Dr. Peress “No, I will not do a laparoscopy on you it’s exploratory and unethical.”  I would like to add that if Dr. Peress looked at my medical history, he would have educated himself that it was not exploratory nor was it unethical. What’s unethical is ignoring a patient and her symptoms and focusing only on IVF.

March 2015-Asked Dr. Peress to test my embryos to find out if they are normal. Was told multiple reasons why he would not test my embryos. “They don’t like to be tested.” “They don’t like to be poked at.” “It’s expensive not worth it.” My embryos were never tested at Boca Fertility.

March 2015-Started second IVF cycle. Dr. Peress thought it would be a good idea to change up my last protocol that worked for me to the long archaic protocol with Lupron and BCP before stimulation. Retrieved fewer eggs, 75% fragmented by day three no transfer.

April 2015-Asked Dr. Peress to test my embryos on this next cycle again was told the same answer NO.

May/June 2015-Started third IVF cycle with Dr. Peress; He did an excessive amount of medication with both the Follistim and Menopur. We transferred two 5-day blastocysts and one morula. Our third transfer was performed by Dr. Hernandez-Rey Dr. Peress was out of town. Negative Beta.

June 2015-On our Follow up appointment, with Dr. Peress he told me that I could do donor eggs. That was it that was his brilliant idea on what the issue was. Do I need to remind him that he NEVER tested my embryos? We left Boca Fertility for good.

June/July 2015-Massive research both on my part and my husbands.

July 2015-Second opinion with Dr. Abae he looked at my hysteroscopy and told me that I have dead tissue in my uterus and that I need to have surgery right away to remove it. I never scheduled surgery because I didn’t believe I had dead tissue in my uterus. He asked, “Why are you not getting more eggs out of your cycles?” My resting follicle count is 18.

July 2015-Flew to Conceptions in Denver, Colorado for a second opinion. Met with Dr. Riggs and discussed my previous history. I told Dr. Riggs I felt as though it was my uterus and I was concerned with what was going on inside. He said that my uterus was not the issue that it was most probably my egg quality since I have advanced maternal aging (39 years old) period end of story. Set up starting IVF in September to freeze all and PGS test. On Conceptions paperwork it asked if I was a silent carrier of Alpha-Thalassemia this was the first time that a red flag went up about the genetic disease I had and they tested my husband to make sure he was not also a carrier. He turned out not to be a carrier. Dr. Riggs said he would never transfer an embryo not knowing if my husband was a carrier or not. Interesting because Dr. Peress didn’t think it was a big deal.

September 2015-Flew out to Denver to start my fourth IVF cycle. Added in other medications such as HGH, Acai Berry. Best cycle yet retrieved 14 eggs, two went to biopsy, and one came back PGS tested normal. Froze healthy embryo.

September 2015-Started sending emails to my nurse to transfer to Dr. Riggs on immune testing. The response was they had no idea what I was talking about.

November 2015-Flew back to Denver for IVF five. Retrieved six embryos, three 5-day blastocysts went to biopsy, and one came back PGS normal. Froze healthy embryo.

December 2015-Flew back out to Denver for three more procedures to be cleared for FET in February. Trial Transfer, Doppler, Hysteroscopy. Everything looked great. In my meeting with Dr. Riggs, I brought up immune testing again. I wanted to have every test done before I transferred a healthy embryo. I was told that inter-lipids are basically like VooDoo they don’t know if it hurts or helps. My requests for more blood work on NK cells were dismissed. Dr. Riggs loved to tell me that I had Advanced Maternal Aging not once but probably about 50 times throughout my course of treatment with him.

January 2016-Priming body for Frozen embryo transfer.

February 2016-Flew back out to Denver to be monitored for FET. Transferred our healthy embryo. Negative beta.

February 2016-A NURSE FROM CONCEPTIONS CALLS TO CONFIRM THE NEGATIVE BETA AND THEN SAYS THAT NOW I CAN DO MORE BLOOD TESTS. That’s right my friends after I have asked over and over again for blood clotting tests, NK cell tests I am told after I emotionally and physically forget financially put myself through yet another devastating cycle that I can now do more testing?

March 2016-IVFMD Dr. Bustillo believes in NK Cells and tests me for both APA and NK Cell activity. She didn’t understand why after the third failure I wasn’t tested for immune issues. Told me that it wasn’t a good idea to try naturally that I would probably only have miscarriages and that I should do more rounds of IVF with PGS testing. Dr. Bustillio asked “Why are you not getting more eggs out of your cycles?”

April 2016-Test results are in I have high NK Cells, normal on the APA panel. My first link from my research that I might have endometriosis. High NK Cells are related to endometriosis.

May 13, 2016-Have a recap with Dr. Riggs about my new blood work results, he brings up again Advanced Maternal Aging in our conversation. I tell him that I am going to try naturally and he agrees that would be a good course of action.

May 15, 2016-Recieved a letter in the mail from Conceptions that Dr. Riggs was leaving the practice to start his practice. If you look at my timeline I had an hour conversation with Dr. Riggs on Friday, May 13th not once did he say anything about his departure. How can you share such an intimate part of your life with a doctor and not even get the courtesy that he will no longer be your doctor?

June 2016-Have to start all over with a new doctor at Conceptions.

July 2016-I told my husband that I believed there to be something drastically wrong with my body. I just felt it. I did a video on my channel telling you girls about this. I was FINISHED with doctors not addressing my issues and just looking at me as one big dollar sign. The five IVF cycles and medication alone were over $130,000 for 2015. I felt it was time that I stood up for my health because clearly, no one else cares about my health if you think different look at everything I went through. I was part of a mill.

July 2016-First inter-lipid infusion

August 2016– Second inter-lipid infusion decided to end inter-lipids since no one was monitoring me and checking my levels basically a waste of money.

August 2016-Consult with Dr. Bush from Conceptions. Told him that I had a laparoscopy scheduled for later this month and he said OK if you do have it I will put you on three months of Lupron. Unfortunately, this is what a lot of doctors that are not experts in Endometriosis will say.  I knew that it was up to me to do as much research as possible about this disease because I was on my own now. If you don’t know what Lupron is look it up before you start injecting yourself. Dr. Bush says “You should be getting more eggs out with each cycle.”

August 2016-Made a second opinion with Dr. Wood from IVFMD. I went in with three tests the EFA, E-tegrity and the laparoscopy tests that I wanted to discuss based on my history. She shot down all of them and then said to me “What do you want to do?” “Just tell me what you want to do?” I thought it was a little strange having a doctor ask me what procedure I wanted to do without telling me with her medical expertise what would be the right thing to do moving forward. I said laparoscopy, and she said great then that’s what we will do. She also told me she only does surgery on Monday’s and that I would have to be on calendar day 6 of my cycle to have the surgery. She also went on to tell me that she doesn’t do many laparoscopies anymore but she would do it. I left feeling anxious and dishearted. Here we go again, what a joke this industry is. Dr. Wood also asks “Why are you not getting more eggs out your numbers are great?”

August 2016-I canceled the surgery for obvious reasons. Bought a ridiculously expensive medical book called “Medical and Surgical Management of Common Fertility Issues, ” it was in this book that I found this little gem of a quote “The diagnosis of unexplained infertility cannot be made without a surgical or laparoscopy confirmation of normal pelvic anatomy.” THANK YOU!!!!!

“The diagnosis of unexplained infertility cannot be made without a surgical or laparoscopy confirmation of normal pelvic anatomy.”

September 2016-Made an appointment with Dr. Zimberg at the Cleveland Clinic and only because my husband did the research and found him for me. I was finished, FINISHED with all this nonsense of no one knowing anything, being treated like I don’t have a brain and don’t know my body.  Not one doctor was being introspective and looking back at what I had been through. Infertility clinics will just keep cycling you until you basically either have no more money or give up.  I had enough of this disgusting treatment year after year. Maybe you have had a different experience with your fertility journey, and I hope you have but as you can see it’s a fight every step of the way or at least it was for me.  Dr. Zimberg was not happy about how many IVF cycles I had been through. He told me that he would be doing a “wash” on my uterus because with even just one IVF cycle you increase your chances of uterine disease. Now how interesting is that? I was never told by one reproductive endocrinologist that I could be increasing my chances of uterine disease.  In addition to the laparoscopy, I requested that the two fibroids be removed and I wanted dye run through my fallopian tubes to make sure they were still clear. I asked Dr. Zimberg if he thought it was weird that after transferring six embryos that I have NEVER been pregnant, not even a chemical pregnancy to give me some hope. He said that yes it was very strange.

October 2016-Laporscopy surgery. My surgery got off to a rough start being delayed for five hours. I was to go in at 10 am and to end up going in at 3 pm was nervewracking. I had a team of five medical experts for my surgery, and I felt incredibly safe and confident. Dr. Zimberg is the first doctor in this entire infertility experience that I felt at peace with. His energy speaks for itself. I felt that he cares about my health and that I was in good hands. Surgery was performed at the Cleveland Clinic in the hospital, so I knew if anything went wrong I had nothing to worry about. My surgery lasted almost two hours; they discovered that I had stage three endometriosis. I had endometriosis on my bladder, rectum among other areas of my uterus and areas where it was concentrated on my pain fibers. Dr. Zimberg did not do the wash of my uterus because of all the endometriosis he found it would have caused more inflammation. Still sedated and not really with it I heard the nurse say something about endometriosis. It wasn’t until my husband came into the recovery room where he told me what stage they found. I just cried.

I cried thinking of the past four years how much all these reproductive endocrinologists put me through without listening to me about my symptoms. Verbally beating me with advanced maternal aging, egg quality, donor eggs, No, No and more No’s on testing.  Through all these cycles I did think that maybe I wasn’t positive enough, that maybe I did something wrong in my life that is why this wasn’t working. Maybe if I prayed a little harder, did more for other people I would be able to get pregnant. The really sad thing is all along I had a severe disease growing inside my body.

The night of my surgery I couldn’t sleep, I woke up and had to do what I know best start researching and educating myself.  I found the Endometriosis Foundation of America. I recognized two of the founding board members Dr. Tamer Seckin, MD and Padma Lakshmi. If you don’t know Padma’s story, you can watch it here. I am getting involved in a program called ENPOWR (Endometriosis: Promoting Outreach and Wide Recognition) Project.

I want to help adolescents because if I had the education and knowledge about my symptoms killer cramps, missing school because of the pain at twelve when I got my period I probably would have been diagnosed in my teenage years.  We need to talk about this; it’s not a secret, and we need to tell our stories. I went my whole life thinking that the pain I experienced was normal that every woman experienced what I did. Not until this year did I find out that not everyone has the pain I do. It took twenty-nine years to be diagnosed; I don’t want other girls and women to suffer like I did.