Raven is a Blogger, Nurse , Youtube Vlogger, and SURVIVOR of Endometriosis and PCOS. She was diagnosed as infertile at the age of 23 due to her diagnoses. She spends her days educating other’s on her condition and inspiring them through her faith in God. Read her story.
- How old were you when you were diagnosed with endometriosis and PCOS? What was your reaction after the diagnosis?
Well, most women are MISdiagnosed for ten to twelve years. I happen to have fallen in that boat. I fought numerous doctors to do more testing and begged for an ultrasound for years. I knew what I was experiencing was not “normal,” although so many said it was. I wasn’t officially diagnosed until last year, 2016. I was 23. I feel that I definitely went through the five stages of grief while learning to live with the idea that I may never be able to give my husband the children we desire. I remember being so shocked when my doctor came in the room (after my ultrasound) and immediately began talking about surgery the same week! I held it “together” until I got in my car. I cried (and screamed) at that point.
I can’t imagine how many other women go misdiagnosed; this is truly unfortunate. As you say those words, I am just reminded that with God anything is possible! My father was diagnosed with a disease that they said would kill him before I graduated kindergarten; he’s been to 4 of my graduations. I pray that God’s healing power would afford you the opportunity bear children; with Him anything is possible. God has the final say.
2, Many people are unfamiliar with both endometriosis and PCOS. Can you give us a clearer understanding of what they are?
Sure thing! I love to educate others about PCOS and endometriosis; and also bring awareness to the growing number of cases around the world. I’ll tackle PCOS first. PCOS is an acronym for polycystic ovarian syndrome. This syndrome affects a person’s endocrine and reproductive systems, and can lead to other diseases like diabetes and infertility. Some of the symptoms include: hormonal imbalances (imagine PMS x1000 ALL month long,) irregular or no cycles, cysts on your ovaries, chronic pain, weight gain, difficulty losing weight, insulin resistance, severe acne, severe dandruff, thin hair, anxiety and depression… It’s rough! Most women end up being on medication and having multiple operations every time cysts develop because it can turn into a life-threatening emergency if it (the cyst) bursts! If that wasn’t enough, I also end up with endometriosis. Which, surprisingly, I consider the hardest one to deal with. Endometriosis is condition where the tissue, that should grow only as the lining of your uterus, grows abnormally. The tissue can grow all over your abdomen and reproductive organs. This leads to extended and heavy periods of bleeding, anemia, chronic nausea, chronic fatigue, excruciating cramps and severe pain— unpredictable and debilitating pain. For so many women, endometriosis impacts their lives in significant ways. Blood transfusions, countless operations to remove the tissue growths, missed work/school during cycles because of the pain… it’s tough to say the least.
I have heard of endometriosis but never PCOS. Even through my “knowledge” of this disease, I had no idea of the severity of these symptoms. I applaud you for being able to live through this illness and still inspire others and keep your smile.
- Because of endometriosis and PCOS, you have also been diagnosed as infertile. What does your journey with infertility look like?
…. Sometimes, I still cannot believe that this is my journey. I had to repeat this question a couple of times, and clear the lump in my throat so that I could answer. It’s still hard to accept sometimes. I have infertility. I NEVER in a million years thought that this would be my story. I mean, my husband and I have been together for a total of 6 year, married for 3, and coming up on trying to conceive for 2 years. Honestly, I’ve gone through some really dark times, times where I questioned God and if this whole Christianity thing was legit. I didn’t want to pray, fast or read my Bible. I started skipping church. Then, one day, I left infertility at the altar. I was too weak to continue to carry it. I remember that Sunday like it was yesterday. It was my first Sunday attending service in such a long time. It literally HURT to sing worship songs. I kept thinking, “I can’t sing this. God isn’t being a good, good father to me.” Then, one of my sisters in Christ just came, grabbed my hand and started praying. I just wept. I still have some really bad days, but nothing like when I was first diagnosed. We are still believing God to conceive naturally- in his perfect timing. I’ve completely transitioned to a vegan diet and my doctor is really pleased with the changes that I have had. However, we know that IVF or adoption may be in our story. We believe that God will supply every financial need for that if needed and that he will get the glory out of our miracle kiddos. Plus, my doctor wants me to be at a certain weight before making that hefty investment into fertility treatments. We are all on the same page, lol.
I too believe that God will supply your needs according to his infallible will.
- What affects has your diagnosis had on your faith? What helps you to cope?
Honestly, this might sound crazy but… infertility literally saved my life. I know you are probably looking so sketch right now, but it is true. Prior to this whole thing, I was so bound up in traditions, legalism, false doctrine, bad theology, under bad teaching…Jesus! I partially fault the “black” church, because of our cliche sayings and unwillingness to be transparent. I mean, I felt as if I was a walking demon or something! You know how people say, “you just need to pray it out.” Then, I felt guilty for even going to the doctor, because people would say things like, “You just need to have faith.” Like you can’t do both?! We forget that God did give us all DIFFERENT talents, and some he called to be doctors. Meanwhile, it’s like 20 couples in here dealing with infertility and we can’t even address it in marriage ministries? I am SO thankful that I was diagnosed with infertility because it forced me to truly seek GOD and find out what Christianity really was about. I wasn’t saved before, because I felt that if I did enough things “right,” that God would give me what I prayed for. I looked at salvation as a ticket to a better life on this earth. I should’ve been thinking about eternity. I didn’t know that the cross was ENOUGH. I know the Gospel now. I know that God loves me SO much, that he gave he Son to die for my sins. I accept that. I believe that. I know that this pain I go through is only temporary, and will all pass away in heaven. It gives me so much hope. Honestly, the story of Hannah and then the story of the woman with the issue of blood are my strength. Worship music ALWAYS pulls me through rough days.
“Prior to this whole thing, I was so bound up in traditions, legalism, false doctrine, bad theology, under bad teaching…Jesus! I partially fault the “black” church, because of our cliche sayings and unwillingness to be transparent.” This quote is the main reason why I started “Conversations Beyond the Pulpit”. The cross IS enough. Thank you so much for this reminder. I cry every time I read this response. I weep because I know the struggle of being influenced by the church to think I have to do things to get things from God. I am grateful that God allowed us both to experience this so that we can see what true salvation is.
- What helps you to still remain hopeful that one day you will bare children?
I know that God gave me the desire to have children. I know because I was always the girl that did NOT want kids. I don’t believe that God would give me this desire, to not fulfill it- you know what I mean? Plus, I read about Hannah in 1 Samuel and I’m like… this is me! I know that nothing written in the Scriptures is by accident. I know that her story was purposefully recorded for me. So that I can be confident in knowing that God can do it. I believe that. I believe that my journey is just to give God glory. I will have a deeper appreciation for my babies now that I’ve experienced all of this, vs if it would have just “happened.”
Yes, I do know what you mean and this is the same mindset I have with marriage. I know that God would not give me this desire if He did not plan to fulfill it. Plus according to the word we know: “Take delight in the LORD, and he will give you the desires of your heart.” Psalm 37:4
- What words of encouragement can you give to another young woman who may be struggling with these same illnesses?
Sis, I want you to know that in spite of your painful circumstances, God loves you so much. I want you to know that your body has not failed you, and that it is a beautiful temple. I want you to cast all of your worries, your anxiety, your hurt, your sorrow, your pain- cast all of it on the Lord, because he cares for you. Sis, know that weeping may endure for a night, but joy comes in the morning. That’s not just a saying, but that’s a promise. That tells me that this is not the ending to OUR stories. Our stories end in joy. XOXO- Rayen
Amen. I can not thank you enough for your willingness to contribute your story. Thank you for your transparency. Thank you for your honesty. Thank you for your strength. My thoughts and prayers are with you , your husband, and your future children. God Bless.