Michele's Journey Through Endometriosis, PCOS, and IVF
Hi everyone! I am Michele and I am writing about my story of endometriosis and infertility to let anyone out there reading this know that you are not alone. My husband Grant and have been trying to conceive for almost 3 years now. We have been on a long road battling PCOS, endometriosis, enduring 4 surgeries, and 3 unsuccessful rounds of IVF/FET along the way.
Michele's Journey Through Endometriosis, PCOS, and IVF
We got married June 27, 2015, and I decided to get off of birth control pills shortly after our honeymoon. I did this for the purpose of giving my body a break and seeing how it would respond without the pill since I had been on them for 10 years and my periods were awful before I got on them. We were not trying to conceive at this point, we wanted to wait until our two-year anniversary to start “trying”, because of course, like so many others, we just figured it would happen right when we wanted to, ha!
I had been off of the pill for about 6 months when things started to change for me. My cycles were becoming farther apart and irregular, I was having a lot of pain during them, I had gained about 20 pounds, and started breaking out with terrible cystic acne. I went to my gynecologist for my annual checkup and explained what was happening. She ran some tests and diagnosed me with PCOS. She informed me that it might be harder to achieve pregnancy but that I should see an endocrinologist in the meantime to figure out how to manage my PCOS symptoms. I went and seen the endocrinologist and she suggested I start taking Metformin. I took Metformin for about 6 months and while it did help with some symptoms, the pain during my cycles was getting increasingly worse each time. I started doing tons of research and I changed my diet, started taking supplements, exercising, etc. but the weight was not coming off and my cycles were still irregular and when my periods would come the pain was just debilitating.
I decided it was time to go back to my gynecologist.
This time she suggested we do and HSG to see if my fallopian tubes were clear. The results showed that my left fallopian tube was completely blocked but that my right tube looked clear. She suggested that when we were ready to start trying, that we give it a few months and if nothing was happening to come back and we could try Clomid. At this point I wasn’t too worried, and our 2nd anniversary was coming up in a few months, so I wanted to get myself and my body into the best shape possible, be at my healthiest before we started trying.
Our 2nd anniversary came, it was such an exciting time. Then the months started to pass and still nothing. After 6 months of trying on our own, with timed intercourse, ovulation and basal temperature monitoring I knew something wasn’t right. My cycles were getting worse with each passing month, and I was starting to have pain in my back, pain with sex, and pain with bowel movements. I knew these weren’t common symptoms of PCOS, so I went back to my doctor and explained. She said my pain was “normal” and that we should just try Clomid. I took her advice and since I had only one blocked fallopian tube, I knew we had even less of a chance of conceiving naturally, so we gave Clomid a try. We did 2 cycles of it and nothing. At this point I started doing my own research of my symptoms and I came across endometriosis. I had never heard of it, but I was checking off every single box. I called my doctor and explained my concern that I may have endometriosis and she brushed me off and said that many women with endometriosis get pregnant and it was nothing to worry about. Something about our conversation struck a nerve. I realized she was not taking me, my pain, or my symptoms seriously and I had had enough. The next day I called a fertility specialist.
A few weeks later Grant and I went for our first appointment at the fertility clinic.
We were nervous but hopeful that they would be able to help us. I had an ultrasound and blood work done and they discovered large fluid filled cysts on both of my ovaries called endometriomas or chocolate cysts. The cysts were very large, one was 7cm and the other was 9cm. They could also tell that along with my left tube, my right tube was also blocked. From those results and my symptoms, they diagnosed me with endometriosis and suggested I have an exploratory laparoscopic surgery right away to assess the damage. I met with the surgeon and a few months later had my first surgery. This surgery was with a gynecologist that the clinic recommended. The procedure was 4 hours long and included the draining of the endometriomas, removal of my left fallopian tube, and removal of the endo adhesions she could see. She diagnosed me with stage 4, which is the most severe case. She suggested we proceed with IVF right away, so that is what we did.
A few months later we started injections for egg retrieval, and we were blessed with 4 embryos.
We proceeded with a fresh transfer and were told we had a 95% chance of success. We walked out of that embryo transfer on top of the world. A few days before our blood test I started spotting and I just knew, the blood test confirmed, our transfer was not successful. We were devastated but we had 3 more embryos and surely one of them would work. My period came after this failed transfer, and I was in more pain that I had ever been in before. I did not feel comfortable moving forward with another embryo transfer because I knew something wasn’t right. We called the surgeon again and she suggested that we bring in a colorectal surgeon in to join her based on my symptoms of severe constipation and pain during bowel movements. I had my second laparoscopy with both surgeons and was told they burned the endo off of my rectum and my bowels and drained my endometriomas again, but still didn’t feel the need to remove my right fallopian tube even thought it was blocked. These were trusted professionals so I took them at their word when they said that I was healthy enough to proceed with a frozen embryo protocol and transfer so that is what we did.
Our transfer went well, and I was very hopeful.
I did not have any spotting so a few days before our blood test I decided to take a home pregnancy test, it was negative and few days later the blood test confirmed it. Why wasn’t it working? What was wrong? So many questions and so much heartbreak. Upon consultation with my fertility specialist, we decided to try one more time, and this time we were putting in our last two embryos, and one of them would stick! Well guess what…it didn’t work, neither of our embryos implanted. We were heart broken and without any more embryos we had some decisions to make. My gut was telling me that this endometriosis was playing a major role. I was still in severe pain, and it was only getting worse. I did some more research and came across Nancy’s Nook on Facebook. There was so much information and resources as well as a list of vetted endometriosis excision experts from around the world. I picked an expert near me, did some research on him specifically and made an appointment.
A few days later Grant and I were sitting in Dr. Miller’s office. I was a mess. He was so kind and took time with us to review all of my previous surgical records and he informed me that the previous surgeons had burned the endo in a process called ablation, which does not get rid of it, it only burns the top layer. Endo needs to be removed from the roots, completely removed in a process called excision. He did an ultrasound and said that my endometriomas were so large that if I had gone through another stimulation, I could have risked rupturing both ovaries, not only could I have lost both ovaries, but I could have put my life at risk. He said he was confident he would help me and wanted to do another surgery right away but also wanted his colleague Dr. Park, who was a colorectal surgeon to join us. I was exhausted at the thought of yet another surgery, but I had a good feeling about these two doctors.
I met with Dr. Park who scheduled a colonoscopy to see if he could detect any endo. The results showed a 6 in mass protruding through my rectum wall. He informed me that he would need to remove my rectum and I would need a temporary ileostomy bag for three months while the new connection he would have to make with my remaining one inch of rectum and colon healed. I was a complete wreck. Not only did I have to have another surgery, but I was going to wake up with an ileostomy bag! If you don’t know what that is, it is when they disconnect your large intestine from your small intestine, then through a hole in your stomach they pull a piece of your small intestine through, flip it inside out and sew it to the outside of your stomach. It is then covered with an ostomy pouch which collects your stool. You have to empty your pouch every few hours and completely take the pouch off, clean the stoma (part of your intestine sticking out of your stomach) every few days. I left that appointment and completely lost it. I could not believe it.
Long story short, surgery was schedule with Dr. Park and Dr. Miller for September 25, 2019, my 31st birthday. I was in surgery for just over 12 hours. Dr. Miller was able to remove my endometriomas, but he also had to remove half of my left ovary due to the damage, he removed my right fallopian tube and lots of scar tissue from my previous surgeries. Dr. Park ended up having to remove 16 inches from my large intestine, 7 of the 8 inches of my rectum, and my appendix. I woke up with the ileostomy bag, a “c-section” type incision along my pubic bone, a drain coming out of the left side of my stomach draining the excess blood, and a PICC line in my right arm for fluids. It was a long and painful recovery to say the least. Having that ileostomy bag for 12 weeks was hard, it was gross, and it took a big toll on my mind, and my self-image. I am so grateful I had my husband to help me through it. He changed my bag and cleaned my stoma for me every 4 days and he didn’t act like it bothered him a bit, even though I know it did. He made the process bearable. I didn’t leave my house much, but it made me so grateful. This was temporary and that I was no longer in any pain from my endometriosis. I had a period during this time, and I had zero pain, I was so happy that it made having that bag not so bad.
After 12 weeks I had another surgery to reconnect my intestines, get rid of the bag and sew the hole in my stomach back up. Dr. Miller also joined to check and make sure there was still no evidence of endometriosis. Surgery went perfectly, there was no more evidence of endo, and my recovery has gone very well. I am currently 6 weeks post ileostomy reversal, and I am feeling great! I no longer have much of a rectum, and your rectum is what stores your waste so you can hold it until you are ready to relieve yourself. I no longer have that choice, once I have to go, I need to find a bathroom as soon as possible, and my bowel movements are much more frequent, but they are manageable, and I know I am very lucky in that aspect, and it will continue to improve over time. I have been having regular periods that do not cause me pain and my bowel movements, while more frequent, are pain free and words cannot describe my gratitude for that and for my doctors who have gotten me here. I am sticking with Dr. Miller as my reproductive/IVF doctor for the future. I did write a letter to my previous clinic informing them of what I have gone through, and I included a list of actual endometriosis experts in the area for them to refer other endo patients to in the future. I hope that they will think of me next time they get a patient with a similar case to mine and that they do the right thing and refer them to an endometriosis expert. That is my hope and the reason why I share my story. I hope to spread awareness for endometriosis and inspire someone else to not give up, you can live a pain free life, you just have to find the right doctor.
For now, Grant and I are enjoying normalcy! No appointments, injections, medications, surgeries or pain! It is so good to feel normal, enjoy life, and be off the emotional rollercoaster IVF and endometriosis takes on your mind and your body. Our plan is to take a tropical beach vacation in March and when we get home we will re-evaluate where we are at mentally and physically and decide then if we are readying to jump back into the crazy world of IVF. I pray and I dream our baby every day, and I know that one day, one way or another we will be parents. My stomach looks like a construction zone from all the scars from all of my surgeries, and sometimes I feel self-conscious about them. But I pray one day I will be able to show my kids these scars and explain to them that the scars are a road map of the journey that it took me to get to them. My scars are my battle wounds, and I am proud of them, endometriosis/IVF warrior for life!
If you are experiencing extreme pain during your periods, sex, bowel movements, etc. know that it is not “normal”. Listen to your body and reach out to an endometriosis specialist if you suspect you have it. Look into Nancy’s Nook on Facebook, trust me, it will be worth it- there is still hope! If you have any questions for me or if you just want to talk, please reach out to me, I am more than happy to chat or to help in any way that I can! XOXO
Medical Disclaimer:
The information provided in this blog is intended for general informational purposes only and should not be considered as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your healthcare provider or qualified medical professional with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this blog.
